Pulmonary Hypertension Association of Canada

Keeping the Flame of Hope Alive

Annual Report 2013

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2013 Highlights

In 2013, we saw the flame of hope burn bright…

Global Hope for Pulmonary Hypertension

On May 5th, 2013, PHA Canada joined more than 60 other PH associations worldwide in raising pulmonary hyperten-sion awareness during the 2nd Annual World PH Day. This incredible unity across the globe demonstrates that pulmo-nary hypertension is a disease that exists in many towns and cities, but that our hope for the future transcends all borders.

Hope Unites Us

Almost 250 members of our community came together in Ottawa for the 3rd National PH Conference from Septem-ber 20th-22nd. This gathering was one of the largest in PHA Canada history, with almost 250 attendees, more than 50 speakers, more youth and children than ever before, and unlimited inspiration. Turn to page 14 to view a photo essay and full report from the 3rd National Conference.

Hope from the Community

This year, PHA Canada witnessed greater community involve-ment than ever before. This involvement comes in the form of organizing fundraisers and awareness events, advocating for pulmonary hypertension at the government level, holding support group meetings, writing articles, creating videos and sharing hope in all ways. Our members do it all with the hope of a better future for those living with PH, and we are honoured to support each and every initiative to this end. To read more about the community initiatives held across the country in 2013, turn to page 8.

Hope through Education

In September, we launched a burden of illness survey to better learn how PH affects patients and caregivers; the tangible statistics from this survey will allow PHA Canada to shape programming to better suit the needs of the community and

will be used to drive home a crucial message in awareness campaigns. Read more about the Burden of Illness survey and all of the advocacy and education work that was done over the 2013 year on page 21.

Hope for Families

2013 has seen a great emphasis on pediatric pulmonary hypertension. Our September issue of Connections featured the stories of young children, their parents and their medical supporters from across Canada. These personal stories highlighted the impact of pediatric pulmonary hyperten-sion and our need for less invasive medical procedures, better treatments, and ultimately a cure. The 2013 National PH Conference also saw more children and youth than any previous gathering. Finally, our Pediatric Committee has been working to develop unique resources to support families that are facing pulmonary hypertension. For greater detail on the work of the Pediatric Committee, visit page 12.

Hope through Developments in Research

Actelion’s new medication Caripul (epoprostenol), another prostanoid infusion therapy for injection was launched in Canada in September, 2013. This new form of infusion medica-tion offers an expanded stability profile, lack of need for ice packs, and the convenience of prolonged refrigerated storage prior to use, all of which allow PH patients greater flexibility in their daily lives.

Bayer’s new oral medication Adempas (riociguat) was approved for use in Canada in September, 2013. Adempas is the first and only drug indicated for the treatment of patients with chronic thromboembolic pulmonary hypertension (CTEPH), a form of PH due to multiple or recurrent pulmonary emboli or blood clots in the lungs. Adempas will offer new hope to CTEPH patients.

Pulmonary Hypertension Association

of Canada Annual Report 2013

About our organization .................................................................2

2013 Highlights ............................................................................3

Letter from the Chair of the Board ...............................................4

Letter from the National Manager ...............................................5

Global Hope for Pulmonary Hypertension ............................................... 6

Around the World for World PH Day .............................................................. 6

Hope from the Community ....................................................................... 8

Imagining a better future ............................................................................... 8

Pennies for PH – Fundraiser report and contest winners ................................. 9

Striding for Breath in Cornwall ..................................................................... 10

In brief – community events 2013 ................................................................ 11

Hope for Families .................................................................................... 12

Programming focused Committees ............................................................... 12

Phocus on the PHamily: an update from the Pediatric Committee .............. 12

Working with Medical Professionals .............................................................. 13

Hope Unites Us ....................................................................................... 14

2013 Highlight: the 3rd National PH Conference Feature ........................... 14

Conference Scholarship fund ........................................................................ 16

Hope through Education ......................................................................... 18

Advocacy ..................................................................................................... 18

PHA Canada initiative: the Burden of Illness Survey .................................... 21

Inside PHA Canada.................................................................................. 22

Our Fundraising ........................................................................................... 22

Corporate donations and donors list ............................................................. 22

Financial statements .................................................................................... 23

Our Revenues & Our Expenditures ............................................................... 25

Our Board and Staff ..................................................................................... 26

The NFP Act ................................................................................................ 28

Reflection ......................................................................................29

In loving memory ........................................................................................ 29

Tribute: In memory of Sandy Metcalfe ......................................................... 30

Looking forward with Hope .......................................................32

Our Mission

To work within a united pulmonary hypertension community and to provide leadership in awareness, advocacy, education and patient support on behalf of all Canadians living with pulmonary hypertension.

Our Vision

A better life for Canadians living with PH.

Who we are

The Pulmonary Hypertension Association of Canada (PHA Canada) is a registered Canadian charitable organization serving those whose lives have been touched by pulmonary hypertension (PH). PH is a rare and incurable lung disease that affects as many as 10,000 Canadians of all ages, races and genders.

PHA Canada was established by patients, caregiv-ers, parents and family members who are collectively referred to as “Canadians living with PH”. Our aims are to end isolation, provide education and create a united Canadian PH community.

PHA Canada works to raise awareness of this disease in the general public and among healthcare provid-ers. It engages in advocacy activities with all levels of government and offers patients and their families wide-ranging support, education and hope. When you become involved with PHA Canada, you’re helping to connect members of our community, create resources for patients and caregivers and ensure that those suffering with PH are not alone.

Our Organization

All photos featured in this Annual Report were taken by Wade Pringle, Ray Lamontagne and PHA Canada community members.

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Letter from the National Manager

This year, the Pulmonary Hypertension Association of Canada celebrated its fifth year of operations. When we began discussions in 2006, we envisioned a national organization that would unite our community, bring a voice to those living with PH and provide tools for our members to fight back. We dreamed that our members would become engaged at a grassroots level, reaching out to their local commu-nities so that others would

learn about PH. We dreamed that this awareness could potentially help others be diagnosed, be treated earlier, and not feel alone in their experiences. These dreams are becoming realities with each passing day. Since those first meetings in 2006 and since the PH Society of Canada became PHA Canada in April 2008, we as a community have made tremendous strides:

We’ve held 3 National PH Conferences, each one larger than the last.

We’ve advocated at all levels of government and helped to overturn legislation that was preventing access to medication for PH patients.

We helped introduce a bill to mandate rare disease legislation at the federal level.

We’ve held incredibly successful awareness campaigns, which have garnered millions of media impressions.

We’ve launched a successful yearly fundraising and awareness campaign, the “6 Minute Walk for Breath”. In 2012, this campaign was a key aspect of November Awareness Month, through which members of our community raised close to $50,000 for programs.

We have expanded our office space to accommodate new staff and program materials, moving into our 3rd and largest office this year.

We have witnessed member engagement across neighbourhoods, cities and provinces that we could not have even imagined when we first founded PHA Canada. Every day, our community is stron-ger and more connected.

Despite all of these milestones, however, there is much to be done. Of PHA Canada’s seven founding members, two have passed on as a result of PH. Countless others have also lost their lives to this devastating disease because we still have no cure. While medica-tions can help to alleviate some symptoms, no treatment exists that allows patients to live how they did before pulmonary hypertension.

We have a lot of work to do. We need to create education, awareness and patient support, particularly from a psychosocial standpoint. We need to ensure that the average time to diagnosis is reduced from its current 2.8 years, and that the medical community knows about and can recognize the symptoms of PH. We need to help PH become a publicly known disease, so that those living with PH – patients, caregivers and their loved ones - have the support that they need to be able to fight back.

Even in the face of these continued challenges, the activity of our organization and community over the past five years fills us with a tremendous sense of hope. The 2013 year was so full of commu-nity activities: you’ll find the heartwarming stories of our members in these pages. 2013 also saw significant pulmonary hyperten-sion research advances. In the past months, two new drugs for PH were approved: one for a subset of PH patients who have not previously had approved medications, and another which alters an existing molecule in a completely novel way. While limited, these treatments will have a meaningful impact on the lives of patients across Canada. Continued research into medications may one day allow PH patients to live normal lives.

Keeping the PHlame of Hope Alive was the theme of the 3rd National PH Conference, which was held in Ottawa this year. We intend to stoke that flame and ensure that it continues to burn brightly. This hope is our inspiration for the theme of our annual report, and we hope that you will be inspired by seeing how much the community has done. Let the flame of hope within you burn a little brighter, and join us on this journey towards a better life for Canadians living with PH.

Angie Knott National Manager, PHA Canada

Letter from the Chair of the Board

After having been involved in PHA Canada since we founded the organization in 2008, it is a great honour and my pleasure to now serve you as the new Chair of the Board of Directors of PHA Canada.

From separate regional and provincial PH support groups, together we have built a truly national organi-zation over the past 5 years. From humble and uncertain beginnings, PHA Canada is

now a stable, strong, effective organization committed to support-ing PH patients and their caregivers. We have become a widely recognized voice on behalf of all Canadians living with PH.

We recently had the pleasure of getting together at the 3rd National PHA Canada Conference in Ottawa! It was excellent meeting many of you from affiliate chapters, support groups, and PH clinics across Canada: kudos to the entire Organizing Committee and our wonderful volunteers for helping to organize a fantastic conference. I especially wanted to recognize the tremendous work of the Chair of the 2013 Conference, Carolyn Pugliese from the Ottawa PH clinic.

I always come away from PHA Canada Conferences inspired by our patients and their caregivers. As we all returned to our regular lives, families, and responsibilities, I hope you felt as energized and rejuvenated as I did regarding your own efforts in dealing with PH – whether as a patient, a family member or friend caring for someone with PH, or as a nurse, physician, or other healthcare provider.

All of us work to support the vision and mission of PHA Canada in many ways, whether it be through volunteering our time, fundrais-ing, spreading the word to increase awareness, or caring for an individual patient living with PH. Although we have made great progress in only 5 years, we still have a great amount to do. Many patients are still not being diagnosed quickly: some have to suffer for more than 2 years before receiving a correct diagnosis of PH. Some PH patients in Canada do not have access to the most

effective medications. Even with medication, most patients still suffer from significant pulmonary hypertension. These ongoing issues in the diagnosis and treatment of PH show that our work is not yet done.

The 2013 PHA Canada Conference was an exciting testament to the great strength of our national PH community, in terms of members across the country as well as our Board of Directors. I am very optimistic and fully expect that we will grow and strengthen PHA Canada over the next year. This will enable us to support more patients and their caregivers, improve PH awareness nationally, and deal with PH-related issues as they arise anywhere in the country. Through working together, I believe we can make PHA Canada the definitive resource and voice nationally for any PH patient, family, healthcare provider, pharmaceutical/pharmacy provider, media and government agency for any and all issues related to PH. Here is to looking at the year ahead with resounding hope.

Sanjay Mehta MD, FRCPC, FCCP Southwest Ontario PH Clinic

Board Chair, PHA Canada

“PH patients inspire me every day.”

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The Lend a Hand for PH Campaign will continue for World PH Day 2014: Remember to order your kit to help in planning your event! For 2014, we are challenging our community to raise awareness of PH far and wide, and have set the very ambitious goal of 3000 handprints collected. We estimate that there are approximately 3000 patients diagnosed with pulmonary hypertension in Canada, so this number represents one hand for each patient. We can’t wait for World PH Day 2014!

My best friend’s daughter was diagnosed with PH two years ago, at age 27. She is also my grand-daughter’s god-mother. None of us had any idea what PH was prior to this diagnosis, and we were devastated and frightened. The first of many challenges was finding ways to deal with our fear and to support her on an emotional level. The second was figuring out what we could do about pulmonary hypertension.

Because of our own initial lack of awareness, we wanted others to learn about this rare disease. We also wanted to raise funds for PHA Canada so that we could support not only our close friend, but even more patients. Awareness and fundraising were our focus. Now that we knew what we wanted to do, how would we do it? A 6 Minute Walk event at the Heart institute here in Ottawa was our first seed of inspiration.

We knew that organizing any type of event could be a big undertaking. How much could we invest our time energy and finances, not knowing what we would be able to fund-raise? There were a lot of vari-ables,but we weren’t about to be discouraged.

Our World PH Day PHundraising event was called “The 6 Minute Walk and Family PHundraiser”. It was held on Sunday, May 5th, from noon to 6PM. Along with my trusty side-kick Connie Pfitzer and the help of the most amazing group of volunteers, we pulled it off. So many people and companies came together to create the success of our event. Family and friends helped by volunteering for the day, and sponsors donated things like a sound sys-tem (The Gallaher Family), sausages and hot dogs for our BBQ (The Country Grocer), financial sup-port (T & L Upholstering, Aegisys) and more. Need-less to say, the support we received for our event was overwhelming.

Our event raised $6600, and we couldn’t have been more elated. I remember the moment when we packed the last things into the truck at the end of the event, and Connie and I embraced one another in the biggest hug. We knew that we had had a very successful World PH Day and had achieved all that we had set out to do. There’s no better feeling.

I was absolutely floored by the willingness of the community at large, but even more so by the people in our lives to support us to the full extent of their ability. I was moved to tears several times over the course of planning this event, just from witnessing the love of our friends, acquaintances and community. Every time we reached out with a need, it was answered almost immediately.

We were truly overcome with gratitude.

All in all, I would absolutely recommend the experience of holding an event to others. It is an incredible way to raise awareness and raise funds, while providing an exciting day for everyone in the community. It is rewarding in a so many different ways. It wasn’t the actual success of the event that was the most uplifting part; it was the generosity of human spirit that we saw along the way that moved us the most. We can’t wait to plan our next event.

Elaine Goodhue

The 6 Minute Walk and Family PHundraiser was a true community achievement and an incredible success in honour of World PH Day. We at PHA Canada were excited and grateful for the work of the Greely PH community in addition to all of the other groups across the globe who helped to recognize this important day.

The 6 Minute Walk and Family PHun day event. May 5th 2013 was a beautiful and sunny day in Greely, Ontario!

Global Hope for Pulmonary Hypertension

May 5th was proclaimed World Pulmonary Hypertension Day in 2012. The date May 5th was chosen because it is the anniversary of the first child’s death from pulmonary hypertension (as a result of toxic rapeseed oil more than 30 years ago) in Spain.

On May 5th, 2013, PH associations, patients and supporters across the globe held unique and innovative events in order to recog-nize the day.

The Japanese PH Association held a ski tournament to “Get Breathless for PH.” A four year old girl named Milka who has PH was also able to participate: she skied with the help of her father, who carried her oxygen tank on skis behind her!

PHA Austria created a brand new song for pulmonary hypertension awareness, which was released for World PH Day.

In Costa Rica, patients and families celebrated a “healthy living” day with exercise and dance activities.

PHA Europe created a campaign called “Get Breathless for PH”, where member country associations were invited to create events surrounding physical activity.

In Bulgaria, in the capital city Sofia, profes-sional dancer Victoria Mihova taught dance workshops. At the end of the event, a profes-sional dance group performed.

The Italian PH Association (AMIP) partici-pated in the Rome International Marathon. The pre-event included meet the press, where runners also did a 6 minute walk event. Some even had their noses pinned and were breathing through straws to get a bit of a better understanding of PH. In addition, AMIP encouraged Pope Francis to recognize world PH Day. On May 5th, Pope Francis did just that by sending his best wishes to all PH patients in his weekly public address from St. Peter’s Cathedral!

The Latin PH Society (an umbrella organiza-tion for all Latin American PH associations) hosted a World PH Day conference, with the participation of many member associations.

In China, to celebrate World PH Day, the PH group published the first edition of a Chinese PH Journal called “BlueLips”.

You can view videos of World PH Day events across the globe on our youtube channel at www.youtube.com/phacanada.

Canadian Community highlights

While countless events were occurring across the globe for PH awareness, some very important events were happening right in our own backyards. Our Corpo-rate Committee recognized World PH Day by collecting signed handprints in the Lend A Hand campaign. Longterm PHA Canada supporter Actelion Pharmaceuticals collected nearly 500 handprints!

Our Canadian community also helped to recognize World PH by holding 6 Minute Walk for Breath walks and Lend a Hand for PH events, including a special “Lend a Virtual Hand” online campaign. Our community collected over 1000 handprints, which were later displayed on a large banner at the 3rd National PH Confer-ence. In addition, we invited our commu-nity members to share their own initiatives. While we heard about incredible events across the country that celebrated this special day, Elaine Goodhue’s “6 Minute Walk and Family PHundraiser” stood out. On the next page is a special report on The Family PHun Day and 6 Minute Walk for Breath in Greely, Ontario, from Elaine.

Around the World for World PH Day

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Group winner:

Supporters across Canada, including elementary schools in Quebec, the Jewish General Hospital’s PH clinic, and the Saskatchewan and Manitoba support groups, contributed significant numbers of pennies. However, there were three groups that really stood out.

The Ottawa Support Group concentrated their efforts during the month of November, as campaign leader Jacqueline Brandwood only learned of the campaign at the Awareness Month launch event. The group achieved putting penny jars in stores and restaurants all over Ottawa, including Staples and Walmart. In a short 3 weeks, they collected a few pennies shy of $1000: a whopping 100,000 pennies in less than one month!

The Atlantic Canada Chapter excluded themselves from our contest because they began collecting pennies, as part of the New Brunswick PH Society, long before the contest was in place. Their contribution was of $1975, and we wish to acknowledge their tremendous efforts in penny collecting over the years.

The group winner of the contest however was the Toronto Chapter! Thanks to contributions from many of their members, including McKynlea Waters-Good-man, they collected $1658.65: 165,865 pennies. As a thank you for their efforts, the Toronto chapter will receive a gift of $200 towards food for an upcoming support group meeting.

Individual winner:

We received penny contributions from individuals across the country, and were overwhelmed by the community’s involvement. The single individual who collected the most pennies was 12-year old McKynlea Waters-Good-man, who collected $202.90 (20,290) in pennies. However, as McKynlea’s contributions counted towards the Toronto Chapter’s winning total, we selected an individual winner who gathered pennies without contributing to a group’s goal. That winner is Katherine Huisman, who collected $91.24 (9,124) in pennies. Katherine will receive a $10 Starbucks gift card as a small token of gratitude from PHA Canada.

The grand total of pennies collected during the campaign (and beyond – some contributions came in after the end of the campaign or begun before its official start) was $6226.97: 622,697 pennies!

Congratulations to the Toronto Chapter, McKynlea and Katherine, and an enormous thanks to every person who gave of their time and energy towards this cause. We are truly grateful.

What to do with all those pennies?

PHA Canada took the pennies collected by our members to the bank, and has allotted the funds to community programs. However, the Ottawa pennies were purchased from the Ottawa group by a friend, and used to make something extra special. This individual took all 100,000 pennies and used them to tile her front hallway! (See photo above)

Now that pennies are a thing of the past, here’s a great idea for a similar fundraiser: Jacqueline Brandwood, the coordinator of the Ottawa group’s pennies efforts, has said that she will be launching a “Make Change for PH” fundraiser. This will focus on contributions of spare change – imagine how much can be raised if people donate their loose change in nickels, dimes, and quarters!

One special donor purchased all of the pennies and created this incredible art piece in her front hallway!Volunteer Susan Garland hard at work.Mary Argus, Nurse Carolyn Pugliese and Susan Garland collecting pennies at the Ottawa Heart InstituteThe team of penny collectors from left to right: Gilda and Colin Brinkworth, Jacqueline Brandwood, PH patient Brenden Brinkworth and his sister Shawna.12 year old Mckynlea Waters-Goodman was recognized for her volunteer work on the Pennies for PH campaign at our 2013 Conference.

Clockwise from top

Imagining a better future

PHA Canada has never witnessed community involvement in the way that it was demonstrated this year. Our organization has always existed with the goal of supporting patients and advocating for the cause of pulmonary hypertension. However, this year PHA Canada acted as an organization to support patients who themselves conducted fundraisers, awareness events, patient support initiatives and advocacy work. This shift in PHA Canada’s role has been initiated by the countless members who are creating change in their own communities. It is a significant shift because it represents the continued growth and expansion of PHA Canada’s vision: beyond our little office into the backyards, town halls and government offices found across the entire country. Our members carry hope for pulmonary hypertension far, far beyond where PHA Canada could carry it alone. And a few meaningful community events are not the end of this movement, but the beginning, as their splash creates ripple effects that extend past our national borders. Ours is a diverse community that is truly united for hope in the face of this challenging disease. This section of our Annual Report highlights several exciting community initiatives which occurred over the 2013 year.

Pennies for PH – Fundraiser Report & Contest Winners

Last year, the demise of the Canadian penny was announced. Interestingly, many of our members had the same idea. Why not collect all those soon-to-be-useless pennies, and use them to help make change for the PH community? And so the Pennies for PH campaign and contest was born. Pennies were gathered from February to November 30, 2012. While we were overwhelmed by the results, we have not yet recognized them in any official capacity. We wish to finally announce the results of this fantastic campaign, and recognize all of those who dedicated their time and efforts to collecting and rolling hundreds of thousands of pennies.

At the outset of the contest, we offered a little incentive for penny collection: both the group and the individual who collected the most pennies would receive a small prize as a thank you for their efforts. Here are the results!

Hope from the Community

“Keep Hope: we’re all in this together!”

–Wendy Bedard

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In Brief – Community Events 2013

Southern Alberta Chapter Holiday Party, January 2013

Place: Calgary, AB Hosted by: Southern Alberta Chapter Details: This potluck party had a “New Year, New Hope” theme.

4th annual Fundraising Dinner, February 2013

Place: Plessisville, QC Hosted by: HTAPQ Foundation Details: 250 people present at this annual dinner: together, they

raised $4000 for the Quebec foundation!

“Educational Afternoon” February 2013

Place: Calgary, AB Hosted by: Southern Alberta Chapter Details: An educational afternoon with guest speaker Linda

Morrell, Provisional Psychologist.

“Pennies for PH” at St. John Fisher Elementary, March 2013

Place: Pointe Claire, QC Hosted by: St. John Fisher Elementary School Details: The students at St. John Fisher collected $257 in

pennies, with proceeds benefitting PHA Canada. This student-led fundraiser was full of heart, and we could not be more grateful.

The Calgary Transplant Trot, April 2013

Place: Calgary, AB Hosted by: Southern Alberta Chapter Details: A fun 5km run/walk around Preswick Pond at the

McKenzie town hall, with the goal of raising awareness for the pulmonary hypertension transplant community.

‘Pampered for PH’ Party, April 2013

Place: Edmonton, AB Hosted by: PH patient and PHA Canada Secretary Lynn-Marie Cox Details: A Pampered Chef party with proceeds of nearly $500

benefiting the PHA Canada Scholarship Fund.

6 Minute Walk and Family PHun Day, May 2013

Place: Greely, ON Hosted by: Elaine Goodhue Details: Read a full report on the Family PHun Day event in

‘Around the World for World PH Day.’

Stride for Breath, May 2013

Place: Cornwall, ON Hosted by: Shawna Brinkworth Details: Read the full story on the Stride for Breath event in the

Hope from the Community section.

Community Booth at the Farmers’ Market, May 2013

Place: Calgary, AB Hosted by: Southern Alberta Chapter Details: A community booth at the Farmer’s Market to promote

PH awareness and education in celebration of World PH Day.

‘Pop a Cork for PH’ Garden Party, August 2013

Place: Vancouver, BC Hosted by: PH patient Tarya Laviolette Details: This summer party featured a wine tasting, live music,

a silent auction and a 50/50 draw. The event raised $1570 for PHA Canada!

2nd Annual PH Kids Golf Classic, August 2013

Place: Orno, ON Hosted by: The Blenkinsop family Details: An afternoon at the prestigious Mills

Run Golf Club to raise funds for programs to support kids living with PH and their families.

An afternoon with your medical professionals, October 2013

Place: Montreal, QC Hosted by: The Jewish General Hospital Details: Featuring medical professionals

Dr. David Langleben, Dr. Andrew Hirsch, Lyda Lesenko, RN and Barbara Di Michele, Secretary.

“Let Me Breathe” – A Vegas Night Fundraiser for Pulmonary Hypertension, November 2013

Place: Toronto, ON Hosted by: PHA Canada Toronto Chapter Details: Featuring casino game favourites, live entertainment,

live and silent auction, door prizes, raffles and much more! A more detailed report on this event will follow in the Winter 2014 issue of Connections.

6 Minute Walk and “Out of Breath” Movie Premiere Luncheon, November 2013

Place: Edmonton, AB Hosted by: PHA Canada and the Stollery Children’s Hospital Details: This Awareness Month event featured a 6 minute

walk followed by the Edmonton premiere of “Out of Breath”: PHA Canada’s short feature film. A more detailed report on this event will follow in the Winter 2014 issue of Connections.

“6 Minute Walk for Breath” for November Awareness Month

Place: Across Canada! Hosted by: Patients, caregivers, friends and family Details: Members of our community ordered kits and organized

6-minute walk events all across Canada to raise awareness of PH during Awareness Month.

Vancouver PH Support Group launch, December 2013

Place: Vancouver, BC Hosted by: Tarya Laviolette, PH patient Details: Tarya is a young mother and holds a Masters’ degree

in Public Health. In her own words: “I was diagnosed with idiopathic pulmonary arterial hypertension just over a year ago. When I was first diagnosed, I felt like I was under water; and when I looked for a local support group, I was surprised and saddened that I didn’t have one to reach out to. PH is difficult and scary, and I think we’d all be better off if we could get together.” PHA Canada is excited about what the future of this new support group holds.

Striding for Breath in Cornwall

In 2013, the town of Cornwall, Ontario experienced its first ever fundraising event for pulmonary hypertension. This event was inspired by a very special relationship: the bond between siblings. The ‘Stride for Breath’ event in Cornwall is an incredible example of transforming a challenge into hope – something PH patients and caregiv-ers do on a daily basis. Below is a special report on the Stride for Breath event from its leader, Shawna Brinkworth.

Three years ago, at the tender age of 15, my little brother was diagnosed with Pulmo-nary Hypertension. He went to the hospital for a regular asthma pump refill, but was sent for further tests. When we got the results, our lives were forever changed. We spent a week at our local hospital and two more at Sick Kids in Toronto. Three years later, he’s doing the best that he can, but still suffers daily. My little brother is my best friend and I plan to dedicate my life to raise awareness for this disease.

The day Brenden was diagnosed, I knew I wanted to step up and try to make a differ-ence... but how? I’ve always been an athlete, specifically a runner. In Cornwall where we live, there are a lot of 5k runs and they seem popular. When I attended the 6 minute walk event in Ottawa this past November, I met several people from my area who either have PH or know someone who does. I told them about my idea. From then on, Kriss Ross, Hanna Mullin and I worked together to make our 5k run for PH happen.

Our motivation came from those around us: friends and family who could sadly not dream of running 5k. Their struggle was our motivation.

The First Annual Cornwall “Stride For Breath” event took place at 10AM on May 11th, 2013. We chose a run because people with PH have trouble breathing, and there-fore even walking is difficult. I wanted my brother, and the others who struggle with PH to see all of us crossing the finish line

and know that we are all running or walking for them. The message we wanted to send was that PH doesn’t affect only individuals but whole families and communities, and that we were all in this together.

Several memorable moments from the day stood out for me. One was watching my grandmother, sitting in a wheelchair and crossing the finish line. She cannot talk due to a stroke, but her huge smile said it all. Hearing my little cousin’s words when he said “We are running because we love

our cousin” was another.

Originally, our goal was simply to raise at least $1000. We reached this target within our first week of fundraising, thanks to Angie at PHA Canada and the fantastic website she created for us. The day before the race we were already at $2540, and by the end of race day, we were elated to have reached $5780. We are so blessed to have had such amazing support.

To anyone considering holding an event of their own: I would recommend it in a heartbeat. It was such a positive, joyful day. I met so many people and families with PH and I know without a doubt in my mind that there were forever friend-ships made. Looking around that day at all of those who showed up despite the cold weather made me realize that family and friends are forever. That’s why it’s so important to treasure them. ~Shawna Brinkworth

Left: Shawna Brinkworth with Jacqueline Brandwood: these incredible women both received Community Hero Awards at our Conference.

Top: The entire community came out to Stride for Breath in Cornwall, Ontario.

“Not everything that is faced can be changed, but nothing can be changed until it’s faced.”

–Shawna and Gilda Brinkworth

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Hope For Families Working with Medical Professionals

Since our inception, PHA Canada has strived to work alongside the medical community. Our pulmonary hypertension-treating medical professionals play a vital role in allowing patients to experience the greatest possible quality of life. For this reason, we have deepened our involvement and collaboration with the medical community over the 2013 year. The following committees play important roles in building this relationship.

Medical Advisory Committee (MAC)

PHA Canada’s Medical Advisory Committee is now operational, with a membership of 7 PH-treating doctors from across the country. They are:

Dr. Sanjay Mehta (Chair), London

Dr. Steeve Provencher, Quebec

Dr. Andrew Hirsch, Montreal

Dr. Ali Kapasi, Calgary

Dr. Lisa Mielniczuk, Ottawa

Dr. Jakov Moric, Toronto

Dr. Ian Adatia (Pediatrics), Edmonton

The MAC established their terms of reference and held two confer-ence calls prior to their first in-person meeting on September 21st at the 3rd National PH Conference in Ottawa, ON. The MAC has a meaningful liaison with the Canadian Thoracic Society (CTS), wherein a permanent place on the MAC is reserved for the Chair of the CTS’ Pulmonary Vascular Clinical Assembly, currently Dr. Steeve Provencher. The MAC has also invited Dr. David Coates, a family doctor from Amherstburg, Ontario, to sit on the Commit-tee. Dr. Coates is not only a GP: he’s also a former CTEPH patient (post PEA surgery). Dr. Coates, who is now a strong advocate for PH awareness, will be sharing his expertise on how to best engage medical professionals in family practice. This will be particularly salient with our increased focus on early diagnosis.

PH Health Professionals Committee (PHHP)

The PHHP held their first meeting at our 3rd National Conference in order to establish projects and terms of reference. This commit-tee is based on the PHPN model at PHA USA, and Committee Chair Carolyn Pugliese has been in contact with the leadership of PHPN for guidance. The PHHP aims to unite all allied health professionals who are coming into the field of PH with the goal

of providing a network of mentorship and support. PHA Canada envisions stronger ties with health professionals across the country as a result of the PHHP.

Clinic Support and Resources

In 2013, PHA Canada continued to strengthen our relationships with pulmonary hypertension clinics in every province. By meeting clinicians and providing them with relevant materials and resources, we have seen a tremendous increase in the participation of PH community members and engagement of newly diagnosed patients. By building these relationships and encouraging clinics to actively disseminate PHA Canada materials, we can ensure that no patient is left without a support network and the resources they need.

Early Diagnosis Campaign

Going forth into the 2014 year, the MAC’s primary focus will be helping PHA Canada to build and launch an early diagnosis campaign targeted at medical professionals. For a more extensive report on this campaign, please review our Looking Forward with Hope article on the final page of this annual report.

to assist in the planning of additional programming for families at conference. Child Life Specialists Amanda English and Jane Darch led a full slate of children’s activities with help from many volunteers. The parent’s support group held at conference was the largest one to date. This provided an opportunity for parents to connect and share their stories while exchanging knowledge and coping strategies. We look forward to building on this unity and sharing in the future by encouraging greater numbers of families to attend Conferences.

As we look ahead to 2014, the Pediatric Committee will continue to seek avenues through which we can support the youngest pulmonary hypertension patients and their families. PHA Canada is honoured to be a source of knowledge, hope and support for those who are touched by pediatric pulmonary hypertension.

Dr. Sanjay Mehta and PH patient Isabel Dade.

PHA Canada has several programming focused committees. These Committees help to advise staff on programs and help with the creation of materials and programming based on their area of expertise. Members of these committees have expertise and skills in that particular programming area. Currently operating programming committees are:

Pediatric Committee

Chair: Ian Adatia

Members: Janie Kidd, Sarah Platnar, Shannon Bloomfield, Janette Reyes, Jennifer Gendron

Medical Advisory Committee

Chair: Sanjay Mehta

Members: Andrew Hirsch, Steve Provencher, Jakov Moric, Ali Kapasi, Lisa Mielniczuk, Ian Adatia

PH Health Professionals Committee

Chair: Carolyn Pugliese

Members: currently being recruited

Read on to learn more about the initiatives and progress of these committees over the past year.

Programming focused Committees

The 2013 year has reflected PHA Canada’s increased recognition of the challenges faced by families living with pulmonary hypertension. Some of these challenges can be alleviated through increased access to resources, for families, schools and communities. Over the past year, the Pediatric Committee has worked to develop a number of resources that will soon be available to families dealing with PH, including helpful information for school and home. The Committee has been working closely with PHA USA to revise and adapt some of their materials to represent the Canadian reality. These materials will be available for distribution in early 2014.

In order to gain greater knowledge and stronger ties with the pediatric commu-nity across North America, members of the Pediatric Committee were also involved in the 6th International Conference on Neonatal & Childhood Pulmonary Vascu-lar Disease, which was held in San Francisco, California from June 21st-22nd. Committee members Janette Reyes, Jennifer Gendron, Sarah Platnar and Janie Kidd attended the meeting and presented a special session for attendees. In this session, the two PH parents Sarah and Janie, Janie’s daugh-ter Gemma Kidd, and PH Dad Steve van Wormer shared the touching stories of their journeys through pulmonary hypertension. Following this session, members of the Committee led an open forum discussion

with conference attendees to discuss the unique issues faced by families of children with PH. A great deal of helpful information came out of this session, which will help to shape our programming in the future. The Committee extends a special thanks to conference organizers Dr. Ian Adatia (who also chairs the Pediatric Committee) and Dr. Jeff Fineman for allowing their partici-pation in this event.

Finally, the Pediatric Committee was very pleased with the significant role played by families at the 2013 National Pulmonary Hypertension Conference held in Ottawa in September. This year, there was a great deal of emphasis on our “PHocus on the PHamily” program and we were very pleased

PHocus on the PHamily – an update from the Pediatric Committee

Nurse Jeannette Reyes with Dr. Ian Adatia and PHA Canada Regional Coordinator Jennifer Gendron.

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Adam & Brendan, PH patients & friends, enjoying activities in the kids’ room.

3 year old PH patient Mayhaan & his brother Dev experimenting with paint.

PH patients Lenore Cook and Joan Nemeth together at the highlight of the year: Our 3rd National PH Conference.

We watched children become inspired by a novel storybook which portrayed a child with pulmonary hypertension as a superhero.

Kelsey Hepples is a young author who was inspired by a very special friend of hers: 3 year old Talitha Decker. Talitha lives with her family in Fort McMurray and enjoyed a regular child-hood until she was diagnosed with pulmonary hypertension in 2012. Kelsey Hepples was moved by Talitha’s struggle, and wrote ‘Super Talitha’: a children’s book which portrays Talitha as a powerful superhero. We were honoured to host Kelsey at our Conference, where she did a reading and book signing for young PH patients and their friends. To recognize the very unique challenges faced by our youngest PH patients is extraordinary: we are grateful for Kelsey’s contribution to our Conference weekend.

We saw the photos of a young man who climbs the world’s greatest mountains, all for pulmonary hypertension.

Matt Moniz is a climber from Colorado, USA, who has climbed to Mount Everest Base Camp, Mount Kilimanjaro and Aconcagua which is the highest summit in the Americas, along with count-less other mountains across Europe and the US. Matt is also only 15 years old, and dedicates each of his climbs to his best friend Ian. Ian has pulmonary hypertension. As keynote speaker at our Conference, Matt showed us just what is possible when we channel our energy towards a goal. Thank you to Matt for this immeasurable inspiration.

We attended fantastic and inspiring sessions on how to live better with PH.

This year’s Conference sessions concentrated not only on the latest in research and treatment develops, but on living well despite the challenges of pulmonary hypertension. This holistic focus on well-being was demonstrated in several Conference sessions which were received with extraordinary interest.

“Breathing your way to calm – exploring alternative therapies” This novel session was led by Locana Sansregret, and focused on utilizing the breath to calm the body and mind. Locana introduced multiple breathing techniques, all of which were grounded in various yoga, Chi Gong and pranamudra practices. Participants loved the very involved and hands-on approach of this session as they were led through breathing exercises. In addition to Locana’s session, Conference attendees were given an even greater opportunity to relax before dinner by engaging in mini “alternative therapy” sessions. “Chair Yoga” consisted of yoga poses tailored specifically to the needs of PH patients, while “Breathe your way to calm” was a recap of the extended session on breathing techniques. These 15 minute calming, restorative sessions were highly attended: the perfect close to a long day of learning.

“Avoiding the salt mines” presented a patient’s perspective on diet and PH. This refreshing session by PH patient Kate McGoey-Smith emphasized the healing strengths of unprocessed, whole foods. Kate’s session made the concepts of low-sodium, low-fat and whole foods accessible to every Conference attendee, and even included recipes.

“Stay strong. Stay super. Remember that you are loved and that you are not alone.”

–Kelsey Hepples

“Think about where we were ten years ago… and now imagine where we might be ten years from now. Keep up the PHight!”

–Tarya Laviolette

PHA Canada’s National PH conference is held biennially. The months leading up to Conference are always filled with excitement and antic-ipation, with community members connecting with one another online in a virtual count-down of the weeks and days until the event. This year was no exception, and we loved watching the Conference energy build for months before the weekend came.

The 3rd National PH Conference was held in Ottawa, Ontario from September 20th to 22nd. This was PHA Canada’s largest and most eventful Conference to date. We hosted a grand total of 247 attendees. They were:

73 Patients

This was the greatest number of PH patients to ever attend a PHA Canada Conference. Of these patients, 4 are thrilled to no longer have PH, thanks to 3 successful translplants and one successful PEA surgery. 5 of these patients were children.

40 Medical Professionals

Conference is a consistently enriching experience. This is in great part due to the medical professionals who travel from across the country to introduce the latest in research developments and PH treatments. We are grateful for each PH-treating specialist who volunteered his or her time to join in our weekend of hope.

25 Corporate Representatives

PHA Canada is honoured to be able to unite the pharmaceutical companies who produce PH treatments with the women, men and children who use them for survival. This is a very unique meeting, which truly brings together these two groups to facilitate invalu-able dialogue which otherwise may never occur.

73 attendees at our Conference came as families, showing how pulmonary hypertension affects not only the individual, but the entire family unit. 21 attendees had no direct connection to PH, but were friends or volunteers who wished to be a part of our event.

While the majority of attendees hailed from the Ontario area, many individuals travelled far and wide to be there, including 24 people from British Columbia, 2 from New Brunswick and 2 from Prince Edward Island. We even had 2 attendees from the US!

This 3rd Conference also hosted more children and youth attend-ees than any previous event.

PHA Canada was thrilled to witness such an incredible diversity of individuals, all of whom have been touched by PH in some way.

Every moment of the 3 day event was full of activity and connection. We witnessed countless events, both great and small, throughout the mornings and afternoons. These events demonstrated that this was no ordinary gathering.

Hope Unites Us

2013 Highlight: the 3rd National PH Conference

Left to Right

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Clockwise from top left

A group of friends united at Conference.

Nurse Carolyn Pugliese leads a Q&A session on all questions relating to PH.

Amanda English & her twin sister Melissa Hutchings organized & led all of the kids’ room activities.

Author Kelsey Hepples signing copies of her book.

Keynote Speaker Matt Moniz leaves the stage with a standing ovation.

PH patient Kate McGoey-Smith’s session on avoiding the salt mines was loved by all attendees.

2 year old PH Patient Everleigh proudly displays her own copy.

Circle time in the kids’ room.

We were present at the premiere of a film that illustrates the impact of PH.

‘Out of Breath’ is a short feature film on pulmonary hypertension co-produced by PHA Canada and the Victoria School for the Arts in Edmonton, Alberta. PHA Canada was thrilled to present the film before its first ever audience at Conference. This video will be available for general viewing through PHA Canada’s website soon.

We witnessed beautiful new connections being forged between parents of children with PH, between caregivers, patients and medical professionals.

Having a family member struggle with PH is even harder when the patient is a young child or a parent to children. This Conference was one for families, with over 25 children and teens in attendance and several special programs. Support groups uniquely tailored to PH parents and PH teens helped for attendees to share their common experiences. PHA Canada also hosted photographer Wade Pringle, who is an uncle to PH patient Talitha Decker. Wade volunteered his time and skills to take special family photos throughout the weekend.

Finally, we felt a resounding sense of hope. This sense of hope is what will lead us into a better future for all Canadians living with pulmo-nary hypertension. We are grateful to each individual and family who made the trip to join our Conference: your energy and spirit is what makes Conference worthwhile.

Thanks to Our Sponsors

We are inundated with inspiration to keep fighting the PHight, and hope that you are too. We’d also like to acknowledge and thank our Conference sponsors at all levels, for making the incredible weekend possible. They are:

Silver Bronze GeneralActelion Pharmaceuticals Canada Bayer Inc British Columbia PH Society

Unither Biotech GlaxoSmithKline Inc. Mckesson Specialty Health

Pfizer Canada

Shoppers Drug Mart Specialty Health

To view a snapshot of our Conference experience, please visit the PHA Canada youtube page (www.YouTube.com/PHACanada) to watch our Conference video.

“HOPE: Hold on. Pain ends.”

–Jordan Blenkinsop

Conference Scholarship Fund

PHA Canada is so pleased to be able to offer a Scholarship Fund for events such as PH Conferences. Education and support for individuals living with pulmonary hypertension has always been an organizational goal. As such, funding Conference opportuni-ties for patients and caregivers who may not otherwise be able to attend is a natural extension of PHA Canada’s vision of a better life for individuals living with PH.

Scholarship funding is raised through individual and group fundrais-ers, as well as donated by corporate supporters. A Scholarship Committee exists in order to make decisions with regard to how scholarship funding is distributed. Because of the nature of these decisions, the committee is an anonymous group comprised of board members, patients and caregivers. The Committee meets on an ad hoc basis, when scholarship requests are made. The Committee reviews each application individually assessing based

on need, available funds and set scholarship criteria guidelines.

This year, at total of almost $33,000 was awarded in Conference scholarships. This amount was dispersed to nearly 50 PH patients and families who would have not otherwise been able to attend our 3rd National PH Conference in Ottawa, Ontario.

This assistance would not be possible without contributions to the Scholarship fund.

We would like to recognize and give a heartfelt thank you to those who contributed to the fund this year. They are: Bayer Inc, who created the Bayer Inc Patient Scholarship Fund (contributing over $10,000), and Lynn-Marie Cox, who contributed to the general fund with proceeds from her ‘Pampered for PH’ birthday party. On behalf PHA Canada, and our scholarship recipients, thank you for your contributions.

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One of the smallest pair of lungs at Queen’s Park.

From left to right: Stephanie from the Respiratory Therapy Society of Ontario, Cheryl from the Canadian Network for Respiratory Care and the Ontario Lung Association, and Dilshad, all giving the lung salute.

Elizabeth from Ontario Lung Association gives her best Lung Health Salute!

individual patient should be determined by his or her PH treating specialist. However, we do believe that it is crucial for as many options as possible be available to our patients. PHA Canada firmly believes that PH patients should have access to any and all medications that have received a Notice of Compliance through Health Canada, based on clinical trials demonstrating they are safe and effective in the treatment of pulmonary hypertension. It is for this reason that whenever a newly approved treat-ment comes to CDR review, we gather information and prepare a submission.

This year, we had the opportunity to provide patient group input on Adempas. Adempas is the newly approved drug for the treatment of patients with chronic thromboembolic pulmonary hypertension (CTEPH), including both inopera-ble and residual (persistent PH post PEA surgery) CTEPH.

Provincial Pharmacare submissions

Once CDR has reviewed the medication in question and made their recommendations, Pharmacare/Drug plans in each province review the recommendations and make their decisions on whether the drug should be listed on their province’s formulary (i.e. whether the cost of the drug will be covered, or whether it will be only available under special authority). Many provinces also have a patient group input mechanism in place. PHA Canada is active in those provinces that allow for this input, ensuring that we make the voice of the community heard throughout the entire approval and listing process.

This year, we had the opportunity to provide patient group input for Caripul, a newly approved thermostable epoprostenol, in several provinces. We will continue to do this into the coming years, as opportunities for input become available.

Advocacy

2013 has been a meaningful year for PHA Canada’s advocacy efforts. What makes this year unique from years previous is the depth of community involvement that we have seen with regard to advocacy campaigns at all levels of government. From achieving town and city proclamations for November Awareness Month to working in conjunction with the Ontario Lung Association to make lung health a provincial priority, we are extremely excited about our hearing the voice of our membership speak out for PH-related issues. Below are some highlights of advocacy work and alliances, which took place over the 2013 year.

The Canadian Organization for Rare Disorders (CORD)

Over the past few years, PHA Canada has been working closely with the Canadian Organization for Rare Disorders (CORD). PHA Canada played an integral role in the 2008 private members bill, which called for the creation of legislation specifically governing rare diseases in Canada: we are the only G-8 country without such legislation. Since the bill was passed, CORD has taken the lead on providing the government with input and feedback during the legislation drafting process. In 2013, PHA Canada had represen-tatives at all 5 CORD meetings that took place across the country, providing the PH patient perspective on the scope of this legisla-tion. Additionally, former PHA Canada Board member Rita Hebert has acted as liaison between PHA Canada and CORD for the past year. In August 2013, (CORD) reached out to PHA Canada to invite interested candidates to apply for their Board of Directors for the 2013-2016 term. We are pleased that Ruth Dolan, who joined PHA Canada’s Board this year, will become our official liaison with CORD. We will be pleased to continue to deepen our relationship with CORD over the coming year.

The Canadian Agency for Drugs and Technologies in Health (CADTH)

In September 2013, the Canadian Agency for Drugs and Technol-ogy in Health (CADTH), began undertaking a review of the entire therapeutic area of pulmonary hypertension. CADTH is Canada’s

drug approval agency, and approval of drugs to treat pulmonary hypertension is a key issue at this time. This is because there are multiple approved treatments for PH, and there are several others in the pipeline, which are likely to be approved very shortly. As PHA Canada acts as a voice for patients and caregivers across the country, we wished to ensure that CADTH fully understood the implications of PH on patients and caregivers, with regard to the benefits but also the limitations and side effects of current medications. We collected the experiences of several patients who are PHA Canada members, in order to share their valuable knowledge with CADTH. PHA Canada was pleased to act as a conduit between our members and Canada’s drug approval agency, so that patients may have a voice in the future of PH treatments in Canada. As the therapeutic area review continues into next year, PHA Canada will continue to monitor it and provide input and feedback to CADTH whenever the opportunity is presented.

CDR submissions

The approval process for drugs is fairly complex: once Health Canada has approved a drug as one that will be available in the country, the company producing the drug then has to submit it for review by the Common Drug Review (CDR), which is a part of the larger CADTH agency. CDR reviews the drug from perspectives such as: effectiveness and safety, value for money compared with other available therapies, as well as patient perspectives on the drug. This information is then used by the Canadian Drug Expert Committee (CDEC) to make formulary listing recommendations for Canadian public drug plans. Based on this recommendation, the provinces then make decisions of whether or not the drug will be listed on their drug plan formulary (if not, there is no coverage). When a new medication is opened up for CDR review, there is a 2 week timeline during which groups which represent the patient and caregiver community in that particular therapeutic area have the opportunity to provide their input on the medication.

PHA Canada does not favour or recommend any specific treatment, as the critical decision of what course of treatment is best for each

Hope Through Education

Top to bottom

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PHA Canada initiative: the Burden of Illness Survey

In September 2013, PHA Canada launched our very first Burden of Illness survey. The Burden of Illness Survey is the first of its kind to be conducted within the PH community in Canada, and will provide rich data on the Canadian pulmonary hypertension community.

Why a Burden of Illness survey?

This bilingual survey was sponsored through an unrestricted educational grant from Actelion and is a significant oppor-tunity for PHA Canada to learn about the in-depth experiences of both patients and caregivers. The goal of the survey is to better understand the day-to-day issues facing Canadians living with pulmonary hypertension, so that we may better serve and support the needs of our commu-nity. We also envision the information gathered from this data to be a vital tool in raising awareness of the disease and its impact, helping to inform and shape our early diagnosis campaign, as well as supporting government advocacy efforts. Our vision is that the results of this sur-vey may ultimately enable those who are diagnosed with PH in the future to live better lives.

How we got the word outThe survey questionnaires were devel-oped by a voluntary committee of doc-tors, nurses, caregivers and patients, and designed to be simple and straight-forward. We launched the online survey in the days leading up to our September

20th-22nd Conference, and publicized the survey throughout the course of the weekend. In order to facilitate survey completion, we had computers onsite at Conference for individuals to complete the survey if they wished, and we sent every attendee home with an informa-tion card. We also mailed this card to key stakeholders within our communi-ty, which included all of the PH treating clinics and support groups across the country, and asked in their assistance in getting the word out to patients and care-givers, and further promoted the survey through the Scleroderma Society and PHA USA.

The responseThe Burden of Illness response rate has been formidable. We collected over 50 responses over the first few days after the survey’s launch, and continued to see great numbers of both patients and care-givers completing the survey. The survey was live for just over one month, from September 18th to October 25th 2013. The grand total of community responses was 179.

Next stepsThe data collected from community member responses will be analyzed and summarized by Harris Interactive, the company responsible for the program-ming and analysis of the survey. We look forward to utilizing these reports in our future advocacy and community work. We expect to have data available early in 2014 and will begin to use this to shape aware-ness and education campaigns, includ-ing World PH Day and Awareness month 2014, as well as a physician-targeted early diagnosis campaign.

We wish to extend our thanks and gratitude to all members of the PH community who participated in the survey and took the time to send us their responses. We would also like to thank all the members of the Sur-vey Committee and all of the support group leaders and medical professionals who helped us to disseminate information about and promote the survey.

Ontario Lung Alliance

Over the past year, the PHA Canada Toronto Chapter has been heavily involved with the Ontario Lung Alliance (OLA). On May 6th, they were a part of the very successful Breathers United reception at Queen’s park, hosted by the OLA. Representatives from almost all of the Alliance’s 40 partners were in attendance, as were individuals living with lung diseases, their caregivers and health care providers. The reception was an opportunity for the more than 25 MPPs present to witness the face of lung disease and to better understand the key messages of the Breathers United movement: that Ontario needs to do more to advance lung health. To build upon the momentum from the spring, the OLA is hosting a breakfast reception at Queen’s Park on Tuesday, November 26. In addition, a number of activities are being planned throughout the month of November, which was officially declared for 2013 onwards as “Lung Month”. A special thanks to Ruth Dolan, Jeannie Tom and Loretta Chu, as well as other members of the Toronto chapter, for their work in building this relationship.

Other associated disease organizations

As PHA Canada grows, we have begun to reach out to and create links with organizations dealing with diseases associated to PH: those to which PH can be secondary. This year, we worked with the Scleroderma Society on the submission for CADTH’s therapeutic area review and have begun to build relationships with other groups such as the Canadian Transplant Association and the newly forming BC Sickle Cell Society.

Our goal is to continue to build links with the associations in order to share best practices. In addition, this will help us to reach members of the larger PH community, which may not be aware of a PH-specific community.

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Inside PHA Canada

Individual contributions

PHA Canada is honoured to receive individual contributions from a number of gracious and committed donors. The follow-ing are the major individual contributions to PHA Canada over the past year.

$500-$999 $1,000-$2,499Andrew Weir Jean Paul Morel Marg Gress Al Glendinning Fern Homen Olive Appelle

Dave Doyle John Burrows Patricia James Bill Pulford Ian Adatia Sandra Langford

Emmanuel Decker John Murray Ryan Hanger Brian Pelley Jim & Linda Jesson UA Local 401

Greg Dicks Jordan Kist Sanjay Mehta Desmond Dwyer Linda Metcalfe Victor Mercuri

Gregory Abbott Linda Woitas Susan Garlinski Edith Lang Nicole Moores Wade Pringle

Ilona Hawser Maeve Cahillane Tiffany Vance

J Karl Miller Trent Abbott Jack Limo

Kyle, Ashley, Ella & Austin Marshall

$2,500-$2,999 $5,000+

Don Moores Vincenzo Carnovale Maximum Yield Publications

We are pleased to share with you our financial statements. PHA Canada undergoes a yearly financial Review Engagement. Please note that this does not constitute a certified financial audit. These are excerpts only and full financial statements may be found on our website at: www.phacanada.ca/2013financialstatements

Our Fundraising

Community efforts

2013 has been a phenomenal fundraising year for PHA Canada. As you’ve learned through this annual report, countless community events and initiatives have set 2013 apart from years previous. This increase in individual and community initiatives at the grassroots level is evident in the increased funding we’ve seen over the year. Receiving funds from backyard garden parties and 6 minute walks in small towns is extremely meaningful to PHA Canada, because this shows the community’s dedication to supporting those who are suf-fering from pulmonary hypertension. Such events cannot help but raise awareness of PH at the same time as funding. When an entire family, neighbourhood or extended community is involved in fundraising, the ripple effects carry far further than a government or corpo-rate grant can. Receiving support from our members across the country also helps to diversify PHA Canada’s funding base: an essential step towards becoming a strong and sustainable organization.

As illustrated, the hope from our community has supported PHA Canada in raising $120,006.47 total in funds between November 22nd 2012 (our last Annual Report print date) and November 7th, 2013. We are honoured to receive such support for our members, and are excited for the fundraising possibilities to come as our community continues to expand.

Corporate efforts

The PHA Canada Corporate Committee members support the mission and vision of PHA Canada via a yearly dues contribution. We were pleased to welcome a new Corporate Committee member Bayer Inc. this year. Corporate Committee members in 2013 were:

Actelion Pharmaceuticals Canada McKesson Specialty Health Unither Biotech Inc.

Bayer Inc Pfizer Canada

GlaxoSmithKline Inc. Shoppers Drug Mart Specialty Health

In addition, Corporate Committee members sponsor specific programs, which fit their company mandates. We wish to recognize the ded-icated support of our Corporate Committee members and other Corporate partners, who have sponsored us at the following levels beyond their membership contribution:

Platinum Silver Bronze General

Actelion Pharmaceuticals Canada GlaxoSmithKline Inc. Pfizer Canada Eli Lilly Canada

Bayer Inc. Unither Biotech Inc.

Financial Statements

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Our Revenues

Our Expenditures

Membership (Individual & Corporate) - 17.3 %

Individual Donations - 22.5%

Corporate Giving - 18.2%

Special Events - 16.2%

Conference & Symposia - 3.7%

Investment Gains - 0.3%

Personal Pages - 18.5%

Merchandise Sales - 0.3%

Recovered Admin Costs - 2.7%

Workplace Giving - 0.3%

Administration & Management - 16.24 %

Affilliate, Chapter, Support Group & Patient Support - 9.62%

Awareness & Advocacy - 15.43%

Conferences & Symposia - 8.55%

Fundraising - 3.58%

Merchandise - 0.14%

Publications - 6.33%

Scholarships - 6.25%

Wages & Benefits - 33.54%

Website - 0.34%

Our Treasurer and Members of our Finance committee are responsible for overseeing the financial health of our organization. We have analyzed internal expenditures and revenues and prepared a supplementary chart to provide our members with an overview of expenditures and revenues from April 1, 2012 to March 31, 2013.

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Board: transitioning to an oversight role

When PHA Canada was first formed in 2008, as a tiny organization with only one part-time paid staff person, it was understood that the role of anyone who accepted a Board position would be to pull up their sleeves and participate in the work needing to be done to create a strong organi-zation that would act as a voice for the Canadian PH community. All of the individuals who have served on the PHA Canada board since that time have contributed their time and skills in many ways to grow this organization. As PHA Canada has grown and developed, what it requires from its Board has also undergone some change. As an organization which is moving forward at a rapid pace, the role of the Board is transitioning into one that focuses more on the future and the big picture. This includes a greater focus on good governance practices, establishing solid policies and procedures, and ensuring that PHA Canada is an accountable and transparent organization that can exist beyond any one individual. Such organizational qualities are what will allow PHA Canada to grow and succeed regardless of Board member changes and staff transitions. Board members who are joining at this time possess skills and expertise to help PHA Canada build a strong plan for the future. This will allow us to serve the PH community better and bring an even louder voice to our fight.

2013-2014 Committees

Several types of Committees assist with PHA Canada’s development and operations. The first are Board/Oversight committees, which focus on the big picture and organizational health of PHA Canada. While membership in these committees consists primarily of Board members, non-board members are at times asked to participate. Several new Board committees were formed during the September 2013 Annual Board Meeting and shortly thereafter. These committees will lead PHA Canada initiatives over the next year. The below lists feature the current commit-tee members, which may change depending on the needs of projects.

Strategic Planning Committee

Chair: Harry Kingston

Members: Bill McLay, Frank Poon

Governance Committee

Chair: Harry Rozakis

Members: Roberta Massender, Charanpal Brar

Finance/Audit Committee

Chair: Charanpal Brar

Members: Bill McLay, Don Moores

Scholarship Committee‎

Membership anonymous

Ad-hoc committees or task forces are also sometimes created based on needs. These committees have a defined start and end point based on accomplishment of a goal. One example of such a Task Force which operated in the past year is the Bylaws Task Force, which was charged with rewriting PHA Canada’s bylaws and preparing the documents of continuance for PHA Canada’s transition to the NFP act. Task Force committees are disbanded once the goals of their project have been met.

Current Committees/Task Forces which will continue to operate into 2014 are:

Communications/Marketing Committee

Chair: Don Moores

Members: Bill McLay, Harry Rozakis

Research Policy Task force

Chair: Lynn-Marie Cox

Members: Ian Adatia, Sanjay Mehta, Frank Poon, Harry Rozakis, Carolyn Pugliese

Office and Staff

In April 2013, the PHA Canada office moved locations. While in the same building, the new office features more space to hold meetings and to welcome volunteers. We are pleased to be able to extend an open invitation to visitors in Vancouver to drop by anytime.

At the end of March, PHA Canada bid farewell to our Communications Associate Corinne Crichlow who had been with us since September 2012. Corinne made several fantastic contributions to our communications programming, including the re-design of our new “Connections Magazine” and the design and implementation of our Annual Report. With Corinne’s farewell, we welcomed Bronwyn McBride to the PHA Canada team. Bronwyn was thrilled to attend her first ever Conference in September 2013, which gave her a deeper understanding of the disease of pulmonary hypertension. PHA Canada currently has a staff of 4 and looks forward to expanding over 2014.

PHA Canada Staff

Shirley Wong Administrative Assistant

Jennifer Gendron Regional Coordinator

Angie Knott National Manager

Bronwyn McBride Communications Associate

Officers

Directors

Outgoing Board Members

Our Board and Staff

The PHA Canada Board underwent some changes as a result of our AGM and Board meetings at the 2013 National PH Confer-ence in Ottawa. We would like to extend a very warm welcome to Ruth Dolan, Harry Kingston, Bill McLay and Don Moores who have joined our Board as Directors.

We also wish to thank outgoing members Darren Bell, Darwin Hanofski, Rita Hébert and Maureen Tymkow for their years of dedicated support.

In a reflection of PHA Canada’s new bylaws, which were approved by membership at the AGM, we are currently transitioning from utilizing the roles of President and Vice-President to Chair and Vice Chair. This represents a shift of the PHA Canada Board from a working Board into a more traditional governance role.

We are pleased to have Dr. Sanjay Mehta as our new Chair, and Roberta Massender as Vice-Chair. Charanpal Brar will remain in the position of Treasurer, and Lynn-Marie Cox in the position of Secretary. We also wish to thank Frank Poon for his service as PHA Canada President from September 2011-September 2013.

Sanjay Mehta, MDFRCPC, FCCP Chair

Ian Adatia, MDMedical Advisor

Ruth DolanDirector

Roberta MassendarVice Chair

Harry KingstonDirector

Bill McLayDirector

Charanpal BrarTreasurer

Don MooresDirector

Frank PoonDirector

Lynn-Marie CoxSecretary

Carolyn Pugliese, RN,MSN, AP Nurse Liason

Harry RozakisDirector

Darren BellBoard member 2008-2013President 2008-2011, immediate past President 2011-2013

Darwin HanofskiBoard member 2011-2013Assistant Treasurer 2012-2013

Maureen TymkowBoard Member 2010-2013Treasurer 2011-2012

Rita HébertBoard Member 2011-2013Assistant Secretary 2012-2013

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Reflection

In loving memory

While our pulmonary hypertension community holds immeasurable hope for the future, our hearts are heavier because of the people that we’ve lost along the way. The success stories from our members, from developments in research and from heightened awareness about PH are worth celebrating, but they cannot and will not bring back our loved ones. The following individuals are those who lost their battle to pulmonary hypertension over the 2013 year. Our hearts and minds are with their families as we look ahead and tentatively imagine a world without pulmonary hypertension.

Elizabeth Manikiam

Marcel Bergeron

Carmen Carrière

Michel Coupal

Suzanne Dorais Vaisica

Annie Gauthier

Nicole Lamer

Solange Langelier

Heather Oliver

Sandy Meltcalfe

Maria Robichaud

Germain Poulin

Margaret Silver

Bobby Spink

Gabrielle Charbonneau

Marguerite Guimont

Heather Oliver

Rod Kelly

Harmen Feenstra

James F. Cooke

The following individuals passed on during the 2012 year. PHA Canada learned of their passing after our 2012 annual report went to print, and as such, we wish to mention them here.

Valerie Fagrie

Lucie Moisan

Gloria Roseman

Terry Snell

Gilles Dionne

Venus Parkman

Mary Redcrowe Moore

Robert Rivers

The following individuals passed on prior to 2012 but have not yet been recognized by PHA Canada. We wish to honour them here.

Nora Monroe (prior to 2008)

Julia Lavelle (2009)

Marilyn Anderson (2009)

Kenneth Poyser (2010)

Penny Sorestad (2010)

The NFP Act

The Canada Not-for-profit Act (NFP Act) is a new Act that came into force on October 17, 2011, to govern not-for-profit corporations. Under the new Act, PHA Canada is consid-ered a not-for-profit corporation. This desig-nation recognizes organizations that have membership and are governed by a board of directors. All federally incorporated not-for-profit corporations must transition to the rules of the NFP Act prior to October 17th, 2014. As such, PHA Canada is currently in a process of transition to meet the rules and requirements of the NFP Act.

Under the NFP Act, an organization’s Board of Directors maintains responsibility for ensuring proper and transparent stewardship of the organization. This includes managing financial reporting, ensuring annual audits of financial statements and developing and implementing relevant organizational bylaws. PHA Canada will maintain its registered charity status under the Canada Revenue Agency, and will adopt its new status of not-for-profit Corporation under the NFP Act upon completing transition.

The transition process includes several steps, many of which were completed this year. A Bylaws/Transition Task Force was estab-lished: their responsibility was to review PHA Canada’s current governing documents (Bylaws and Articles Patent) and determine what changes needed to be made in compli-ance with transition to the new Act.

The Task Force worked over the course of 2013 to write new Bylaws and prepare the Articles of Transition, which will become PHA Canada’s new governing documents. The Board of Directors approved the new documents by special resolution on August 1, 2013. The new documents were then sent to PHA Canada’s membership, along with the Notice of AGM for their review. The new bylaws were unanimously passed by membership in attendance at the AGM on September 22, 2013.

What happens next?

PHA Canada’s Board must now file the documents, within 12 months of member-ship approval, to Industry Canada to receive

a Certificate of Continuance. This certif-icate, along with the Articles of Continu-ance and new Bylaws, will compose the bulk of the documents by which PHA Canada is governed.

Our articles of Continuance slightly amend and update the objectives which were laid out in PHA Canada’s original letters patent. These were inherited from the PH Society of Canada, which became PHA Canada in 2008. As such, Canada Revenue Agency (CRA) approval is required on these objec-tives as they form the basis of our chari-table status. We have filed the objectives and our statement of activities with CRA and are currently awaiting approval. The Board has also filed the Articles of Contin-uance, our new bylaws and all other neces-sary documentation with Industry Canada, and we are currently awaiting our Certificate of Continuance. The new bylaws will come into effect once PHA Canada receives our certificate of continuance from the Minis-try of Canada.

The new governance documents will bring about several changes. These are:

• A transition from President/Vice-President titles to Chair and Vice-Chair. These reflect the changing nature of the Board and its transi-tion to a more traditional oversight role.

• An introduction of term limits for Board members. A Board term will now be for a period of two years (instead of yearly) and a maximum of three consecutive terms will be allowed. This is to provide Board members with clear parameters of their time commitment to PHA Canada, to have less frequent transitions, and also to allow for new Board members who bring fresh ideas and perspectives.

• The introduction of several categories of members. There will now be three different membership categories:

1. Non-voting: most of PHA Canada’s current members will fall into this category, as will new members. This is the regular member-ship that has the benefits of attending PHA Canada meetings and conferences and receiving PHA Canada publications. This membership category will not be invited to members meetings, nor have a vote at AGMs.

2. Voting members: Voting membership will now be reserved for those members who participate in PHA Canada beyond paying a membership. This category of members is reserved for PHA Canada Board and PHA Canada Ambassadors, both of whom must meet certain participation criteria to remain in these roles.

3. Founding members: this category is reserved for those individuals who were the key players in the founding of PHA Canada. These individuals will have a lifetime membership and a vote at members meetings. They include and are limited to: Darren Bell, Lynda Beriault, Jennifer Gendron, Elizabeth McCall, Leon Paroian, Sharon Proudfoot and Sanjay Mehta. This category of membership is a way to honour and preserve PHA Canada’s history while moving toward the future.

This transition to the NFP Act has offered PHA Canada a legislated opportunity to review and update our existing bylaws. It has provided a chance to further develop organizational documents that are modern and streamlined, with a view to enhancing struc-ture, governance and accountability. This will support PHA Canada’s continuous growth as a not-for-profit organization.

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We hold immeasurable hope for the future, and for PH patients like Everleigh.

Looking forward with Hope

As we move into the 2014 year, we will continue to create new ways of supporting our PH community. Our holistic focus on living better with PH will be amplified this year through initiatives from our Psychosocial Support Program. Living well also means giving back, so we are pleased to be extending PHA Canada’s volunteer program through the introduction of ambassador roles and a community helpline. Finally, PHA Canada truly believes that a better life with pulmonary hypertension begins with the earliest possible diagnosis. As such, our Early Diagnosis campaign will take centre focus over the coming year.

Psychosocial Support Program

A new Psychosocial Support Program committee has been formed, composed of PH patients who also have a background in psychology and/or social work. The purpose of the committee is to address the need for psychosocial support in the PH commu-nity. While patients may have their physical needs met through medications, social, support and emotional needs may often go unaddressed. This truth applies to caregivers as well. 2014 will see the Psychosocial Support Program take shape, with early plans for a patient-to-patient support line as well as several other projects in development.

Volunteering to give back

PHA Canada is expanding our volunteer roles. We are creating a robust volunteer (or knowledge philanthropist) program, which we will continue to grow in 2014. Our aim is to work with skilled volunteers on a per-project basis, matching a volunteer’s skills, availability and interests to a specific project that has measurable and concrete outcomes. This creates a truly rewarding opportu-nity to give back. If you have skills that you would like to lend to the PH community, learn more on our website or contact the PHA Canada office.

Focusing on early diagnosis

PHA Canada understands that the sooner a patient is diagnosed with PH, the sooner they may begin to work with their physician to determine the best treatment path to alleviate symptoms, increase quality of life and prolong life. The timing of diagnosis is critical for a progressive disease like PH. Current statistics show that it still takes on average 2.8 years for a correct diagnosis: this is too long. Our Early Diagnosis Campaign, generously sponsored by Bayer, will utilise some of the learnings from our Burden of Illness survey to target the medical community and educate them on what to do if a patient is presenting with these symptoms. 2014 will see PHA Canada, under the guidance of our Medical Advisory Committee, building and launching our much-anticipated early diagnosis campaign.

Looking forward with Hope

Over the coming year, PHA Canada will continue to grow and evolve with our members. We are honoured to be a part of your day to day experiences. Our lives are made rich by our commu-nities, and we are grateful to be able to facilitate the creation of lifelong connections.

We urge our community to remember the ripple effect. Your every action may inspire hope in someone else – to speak up, to step out, or to keep phighting. Thank you for being a part of PHA Canada.

Tribute: In memory of Sandy Metcalfe Sept 4, 1952 - June 6th, 2013

We regret to announce the passing of a valued friend and mentor to the Canadian PH community. Sandy Metcalfe passed away peacefully on June 6th after complications following a double lung transplant. Sandy had experienced a very long and hard battle with idiopathic pulmonary arterial hyperten-sion. She touched thousands of lives in her roles as a teacher, mother, wife, colleague, grandmother, sister, board member and trusted friend. Most significantly for PHA Canada, Sandy will be remembered for her tireless efforts as a support group founder and leader in Saskatchewan, and for her years as Board Member and Secretary of our organization.

We wish to recognize everything that Sandy lived for through this tribute. Below is Sandy’s story in greater depth, taken from her obituary.

Alexandria Marie was born to Edmund and Olive Kramer on September 4, 1952. Her childhood was spent near Anaheim, SK, leading her 8 brothers and sisters in adventures on the farm and beyond. Moving to Unity in 1966, Sandy attended Unity Composite High School where she excelled in her academic, athletic and “social” studies. This is where she met and fell in love with Billy Metcalfe, her high school sweetheart and partner for life. After gradu-

ation, Sandy moved to Saskatoon to study nursing. She and Bill were married in 1971 and started their life together in Saskatoon. Sandy stayed at home with her sons Shayne Jonathan and Jarrett James, and was kept busy leading them in adventures camping, travelling and playing sports. As the boys got older, Sandy went back to school, receiving a Bachelor’s of Education degree (with Great Distinction) from the University of Saskatch-ewan in 1986. She spent 20 years teaching kindergarten in the Catholic school system in Saskatoon, where she was a dedicated, caring and skilled educator who truly loved and cared for her students.

Sandy was also a skilled athlete and a formidable competitor. A member of the Riverside Badminton club for many years, she excelled at the sport and won 6 national level silver medals. She was always the first one to start a game, to lead an exciting adventure, to dress up, to start a party and laugh. She was a tiny firecracker with an infectious spirit and a killer wardrobe, but also tender and caring with a gentle touch for those who needed it, whether they knew it or not. “Sheena’s” delight in her grand-children was evident, and her love for them unbounded. Her joy seemed so effortless and her energy unstoppable.

Sandy became active in PHA Canada, and co-founded a PH Support Group for patients in Saskatchewan. As her health worsened over the past 5 years, she continued to challenge herself, the disease and every-one around her to keep up. Her positive attitude and refusal to give in to the increas-ing pain and exhaustion gave her family and friends hope that we could keep her longer than the prognosis allowed. A double lung transplant was the hope we were waiting for, but complications after the surgery made it impossible for even Sandy to overcome. She passed away peacefully at the Univer-sity of Alberta Hospital with Bill at her side.

Sandy is so missed by her family and friends, who remember her with love and respect for the amazing woman she was. But she hasn’t really left us. As always, she’s just leading us on the next adventure.

A celebration of Sandy’s life was held on Wednesday June 12th at 1:30 p.m. at Holy Spirit Church in Saskatoon.

Over the years at PHA Canada, we witnessed Sandy deal with PH in the same graceful way that she met all challenges: with optimism, faith and determination. Sandy had a beautiful and infectious energy that inspired everyone who came across her. She will be deeply missed.

Left to right:

Sandy with her family. Sandy’s contribution to the ‘I dream’ video.Sandy with her husband Bill in the airport.Sandy was always the adventurer: she loved to travel and hike.

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L’Espoirvoit l’invisible,

sent la valeur immatérielle et réalise l’impossible.

HopeSees the invisible,

Feels the intangible,And achieves the impossible.