Engaging Our Community

Annual Report 2012
Engaging Our Community
Pulmonary1 Hypertension Association of Canada
Pulmonary Hypertension Association of Canada
Annual Report 2012
Our Organization.................................................................................................................1
President’s Message............................................................................................................2
National Manager’s Message..............................................................................................3
Our Board.............................................................................................................................4
Our Staff...............................................................................................................................4
Our Financials......................................................................................................................5
Our Expenditures..................................................................................................................7
Our Fundraising.................................................................................................................10
Our Donors.........................................................................................................................11
Our People..........................................................................................................................12
Our Community..................................................................................................................14
In Memoriam......................................................................................................................16
Engaging our Community –
Together We Are Making a Difference
2
Summary of 2012
Our Organization
2012 was a year of continued growth for
PHA Canada and the PH community:
The Pulmonary Hypertension Association of Canada (PHA
Canada) is a Canadian registered charity organization
serving those whose lives have been touched by pulmonary
hypertension (PH).
• PHA Canada’s Board of Directors grew to 12
members, and 3 new directors joined the Board
in 2012.
Pulmonary hypertension (PH) is a rare, incurable lung disease that affects as many as 10,000 Canadians of all ages,
races and genders.
• We created the Medical Advisory Committee
(comprised of 7 of the top specialists in PH
around the country). We also created the PH
Health Professionals Committee, which brings
together nurses, pharmacists, physiotherapists,
nutritionists and all other allied health professionals working in the field of PH.
PHA Canada was established by pulmonary hypertension
patients, caregivers and family members on the principles
of ending isolation, raising awareness, providing education
and creating a united Canadian pulmonary hypertension
community.
PHA Canada works to raise awareness of this disease in the
general public and among healthcare providers. It engages
in advocacy activities with all levels of government and
offers patients and their families wide-ranging support,
education and hope.
• A Pediatric Committee was created comprised
of parents of children with PH, and pediatric PH
treating medical professionals. The goal of the
committee is to help create programming and
resources for children living with PH and their
families.
Mission:
• We hired our 4th staff person. Corinne Crichlow,
our new Communications Associate, who joined
us in early October.
The mission of PHA Canada is 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 PH.
• We launched our brand new 6-Minute Walk
for Breath fundraising/awareness campaign
in November. The campaign was embraced by
members of our community from across the
country and as a result of the community’s
awareness and fundraising efforts, we raised a
record: $45,844.34 (at time of publication) for
PH programs.
Vision:
Our vision is a better life for Canadians living with PH
• More community members and volunteers got
involved than ever before. There were more
awareness activities, fundraisers and newsletter/
website contributions in 2012 than in any previous year.
1
President’s Message
It is my honour to share with you PHA Canada’s
Achievements for 2012. Our Board of Directors is cognizant of the importance of the work of PHA Canada
and we are engaged in steering our organization in a
direction that meets the needs of our PH community
and Canada as a whole.
Seeking partnerships
We are continuing to seek partnerships with national
and international organizations to further our awareness agenda and learn from organizations seeking
to build PH programming. We are seeing increased
awareness in our activities and the activities of some
of our larger partners. This year we launched a call for
Canadian professionals to build a resource network
that would offer psychosocial support to our members.
We will continue to develop this program and grow our
partnerships in 2013.
As we succeed in making pulmonary hypertension
a better-known rare disease, we are steps closer to
achieving higher rates of early diagnosis and creating
fertile grounds for raising funds to support our work
and the future work of our community’s physicians.
Governance innovation
We have started reviewing our governance structure
and we are considering ways to improve our infrastructure and the capacity of our elected members. We have
developed an in-house resource for board members
and we are developing new by-laws for terms to better
serve the organization. We are continuing to refine our
internal processes in order to ensure that PHA Canada
is an accountable and transparent organization from
bottom to top.
In 2012, we have seen significant growth in our membership and our community engagement. In this, our
inaugural Annual Report, we will be reporting on our
initiatives, our financials and our community engagement. I am pleased to report on changes that I am
particularly proud of for 2012.
Creating a fresh look
We launched our Awareness Month activities in
November 2012 with a fresh one-colour look that
garnered a lot great feedback and encouraged us to
develop a new approach for our newsletter, Connections. We will be moving to a biannual publication run
for Connections and we have moved to a magazine
format. I am very excited about our fresh look and I
hope our members enjoy it and the content.
There is a marked energy of growth around our
organization and we are capitalizing on this energy by
seeking ways to improve and enhance our services and
our programs. We are only as effective as our members
and I am so thankful for the support our community
has shown our organization in 2012. Your continued
dedication is the key to our success.
Enhancing our communications
We understand that we live in a world where connections are increasingly easy to develop. We have
taken steps to increase our outreach digitally and we
are developing communications strategies to meet
and measure our engagement with our community.
We know that it is important to stay relevant and we
are taking steps to make sure that our community is
receiving the information and the support they need
while we balance our awareness programming and
seek innovative ways to further engage Canadians in a
dialogue about PH.
Frank Poon, President, PHA Canada Board of Directors
2
National Manager’s Message
It has been such a privilege for the last four years
to see our little community grow: more and more
patients, families, and friends are getting involved,
sharing their stories and raising awareness of this
life-altering disease. As more of you join the community of the Pulmonary Hypertension Association of Canada, we also grow and change. This annual report, our
first ever, is a testament to that growth and change.
This community has made so much progress in these
short four years: when PHA Canada was formed, in
2008, the community was small and strewn across the
far reaches of this country. We are now coming together, getting closer and finding one another. We have
more support groups, chapters and friends meeting
and connecting in any way they can. We have more
support and more hope. We are becoming a force, we
are strengthening our voice, and we are raising the
profile of pulmonary hypertension.
I am inspired daily by all of you: there are so many
extraordinary, strong, selfless people within our
community. People who are sick, who struggle daily,
yet who continue to give and give and give in order to
build our community and to help support others. You
are my heroes and you have taught me so much about
true passion, strength and believing in a cause beyond
all else.
It is thanks to you that PHA Canada is able to continue
to grow and provide more ways to fight back, more
resources and more programs to you, our beloved
community. It has been a year of tremendous growth
for us: we hired our fourth staff person, we launched a
brand new awareness and fundraising campaign and
we continue to develop and build upon all of our programs. You will read about the changes and successes
that have happened in this past year in these pages
and in the pages of Connections Magazine included
with this report. As you do, you should remember one
thing: all of this is possible thanks to you; as you, each
and every single one of our members, you are PHA
Canada.
While we have made many strides, there remains more
to do: there are still patients being diagnosed in the
late stages of PH, it still takes on average 2.8 years and
3 specialists to correctly diagnose PH, we continue to
lose too many of our community to this disease and
there are still patients and families living in isolation,
who have not yet become part of our community, who
do not have the support they need, who may not even
know about us.
We need to continue to come together; each and every
one of us can do our part to educate healthcare professionals, family members, friends and the community
at large on the challenges of living with pulmonary
hypertension.
As you read through the pages of this, our very first,
annual report, I encourage you to celebrate the
successes of our community; to mourn the passing
of those we have lost; to come away with a renewed
sense of hope and a desire to get involved and take
action in 2013, to assure that our PH community continues to grow stronger year by year.
Angie Knott, National Manager, PHA Canada
3
Our Board
Frank Poon
President
Charanpal Brar
Treasurer
Lynn-Marie Cox
Secretary
Darren H. Bell
Director
Darwin Hanofskti
Director, Assistant Treasurer
Harry Rozakis
Director
Rita Hebert
Director
Roberta Massender
Director
Maureen Tymkow
Director
Ian Adatia, MD
Director, Pediatric Medical Advisor
Sanjay Mehta, MD
Director, Medical Advisor
Carolyn Pugliese, RN
Director, Nurse Liaison
Angie Knott
National Manager
Jennifer Gendron
Regional Coordinator
Corinne Crichlow
Communications Associate
Shirley Wong
Administrative Assistant
Our Staff
4
Our Financials
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 however PHA Canada is committed to
transparency to our donors and has prepared an internal statement with a view to including audited statements in
future Annual Reports.
Please note that these are excerpts only and full financial statements may be found on our website at:
www.phacanada.ca/2012financialstatements.
5
6
Our Expenditures
Our Treasurer and Members of our Operations & Finance Committee are responsible for overseeing the financial
health of our organization. We have analyzed internal expenditures and prepared a supplementary chart to provide
our members with an overview of expenditures from April 1, 2011 to March 31, 2012.
Awareness - 22.57 %
Patient Scholarships -3.05 %
Patient Support - 8.65 %
Fundraising - 1.50 %
National Conference - 35.97 %
Managenent and General - 10.83%
Support for Chapters,
Affiliate Associations and
Support Groups - 3.00 %
Salaries and Benefits - 14.43%
7
Engaging Our
Community
Together We
Are Making
a Difference
Since 2008, we have seen our organization grow in so many ways, from the number of board
members we have steering our ship, to how we engage with our members. We are an organization
that has grown from an idea originally planted in 2006. In our early days, Canada did not have a
network to support patients with this rare disease, pulmonary hypertension (PH).
Within the last four years, we have found that Canadians across the country touched by pulmonary
hypertension are reaching out to each other and finding innovative ways to engage our community and make differences in the lives of patients and their networks. By coming together to raise
awareness, each and every one of us can do our part to educate health care professionals, family
members, friends and the community at large on the challenges of living with pulmonary hypertension.
We know that as our community continues to grow, so too will our capacity to create awareness
about pulmonary hypertension and create resources to better support the needs of our members.
We continue to work on:
Engaging our Community
• Creating new PH Committees to support the mandate of our organization.
• Enhancing our ties with the international PH community.
Making a Difference
• Engaging our people and building strong support networks.
• Building our community and finding innovative ways to meet our financial need.
We are so pleased to share with you our inaugural Annual Report and highlight the progress we
have made in building our community and how our members are fundraising to support the work
of the Pulmonary Hypertension Association of Canada, its Committees and Chapters.
Engaging Our Community. Together We Are Making a Difference.
Our Global Reach
international leaders), this year
we participated more and took a
leadership role in the international community.
official conference opening. Our
National Manager, Angie Knott,
also facilitated two strategy-meeting sessions during the Summit.
While PHA Canada has always had
a tie-in with the International PH
Community (we signed a memorandum of understanding with PHA
(USA) in 2008 and have always been
an active participant in conferences
and discussions that bring together
In June, at the 2012 International PH Conference in Orlando,
we were asked to present our
Awareness programs to leaders
from over 20 countries at the
International Leader’s Summit
that took place the day before the
Since that Conference we have taken
the lead on many discussions among
the international community, and
even set up a file sharing system,
so that we may share ideas, and
best practices amongst our groups
regardless of country.
Our Fundraising
This year, PHA Canada launched “Personal Pages” an online fundraising tool. Personal pages generated $31,817.65
in donation revenue from January 1 to November 23, 2012. The PH Community found Personal Pages to be an
excellent tool for raising awareness and fundraising during Awareness Month: the community raised $21,280
between November 1 and November 23, 2012.
Between January 1 and November 23, 2012, PHA Canada raised $290,534 via donations and sponsorships. Special
thanks to our donors and the tireless efforts of our members and community volunteers.
Corporate Donations
PHA Canada is very grateful for the support of our Corporate Committee partners, who not only contribute a yearly
dues amount as members of the Committee but who also sponsor our programs on a regular basis. We would like
to recognize the contributions made by our corporate partners in 2012, who have sponsored us at the following
levels beyond their membership contribution:
Platinum Sponsors
Gold Sponsors
Silver Sponsors
General Sponsors
Actelion Pharmaceuticals
Pfizer Pharmaceuticals
GlaxoSmithKline
Eli Lilly
United Therapeutics
We would also like to extend a special thank you to Actelion Pharmaceuticals for going above and beyond in support
of the PH Community and for contributing $10,000 in matching funds to PHA Canada’s Awareness Month campaign. Thank you Actelion for your continued commitment to the PH community.
The $10,000 in matched funds would not have been possible without the tremendous response and enthusiastic
involvement of the PH community in this year’s Awareness Month, so thank you to all of you for your great fundraising efforts.
10
PHA Canada’s “Lend a Hand for
PH” campaign was so popular
amongst the international leaders
that many groups have asked if they
can use the campaign, translating
the materials into their respective languages. We have shared
all campaign materials with the
international community for their
use. We will be using the campaign
to raise awareness during World
PH Day (May 5, 2013) and we are
encouraging other countries to do
so as well , in the hopes that we can
start a “hands across the world for
PH” movement.
Because of our unique position of
being a mid-sized (not as large and
sometimes daunting in terms of budget, staff and level of development,
as PHA USA) organization, many
other PH Associations have turned
to us for advice and best practices.
In turn, we have done the same with
many of the Associations, the US
included, utilizing their resources,
campaigns and program ideas to
help build our own tools. Working
within this cooperative environment
allows us all to share and grow our
own programs without having to
reinvent everything and allows us all
to maximize our resources for the
good of the community on a local,
national and international scale.
Our Donors
PHA Canada relies on the generosity and dedication of our donors to further our mission and to support our activities including raising PH awareness, advocating on behalf of the community, educating patients and the public at
large and providing support to those living with PH. We would like to thank all of those who contributed in 2012; we
appreciate each dollar donated as it helps to make a huge difference in the programming we are able to offer. We
would like to recognize all of those who made generous contributions towards PHA Canada’s work this year:
In 2012 (January 1 until press time (November 20, 2012)*
•
•
•
•
•
374 amount of donors contributed $5 – $25 to PHA Canada
151 donors contributed $26 - $50 to PHA Canada
127 donors contributed $51 - $100 to PHA Canada
30 donors contributed $101 - $200 to PHA Canada
21 donors contributed $201 - $500 to PHA Canada
*While we would like to personally name all those who have contributed, because of limited space and many donors, we have
listed how many contributed in each category. If you donated to PHA Canada this year, please accept our deepest thanks for
your support.
Thank You
PHA Canada received notable contributions of over $500 from each of the following donors:
$500 - $999
$1,000 - $2,499
$2,500 - $2,999
•
•
•
•
•
•
•
•
• 1315205 Ontario Limited
c/o Coalition Music
• Members of the Toronto Chapter
(Pennies for PH)
• Brenly Riddell
• UA Local 463 –
The Lakeshore Local
• Alan Razoky
• Andrew Jacobsen
• Iqbal Saran
• Mohammed Verjee
• Steve Van Dalen
Adatia Family
Michael J. Martinez
Linda Woitas
Amin Adatiya
Devinder Brar
Barbara McCready
Ruth Dolan
United Way of
Greater Toronto
• Royal Canadian Legion
Branch #521
11
$3,000 - $4,999
• Darren Bell
$5,000 +
• Bradford Invitational Golf Tournament
Our People
(PHA Canada Committees, in alphabetical order)
Advocacy Committee
Conference Committee
The Advocacy Committee is charged with
keeping up to date on any policy issues that
may affect the community. The committee
is also charged with seeking out and maintaining links between PHA Canada related
interest organizations such as the Canadian
Organization for Rare Disorders (CORD),
Lung Associations (provincial and national),
organizations dealing with access issues,
as well as associated disease groups (such
as the Scleroderma Foundation). The main
goal of the Committee is to keep “an ear to
the ground” for potential policy problems
and get ahead of them, making PHA Canada
more proactive rather than reactive in the
advocacy role.
The Conference Committee is an ad hoc
committee formed to organize and plan
PHA Canada’s biennial national conference,
which will be taking place in 2013 in Ottawa.
This year, the committee is chaired by
Carolyn Pugliese, Nurse Coordinator for the
Ottawa PH Clinic. In addition to the chair,
the committee includes liaisons to both
the PHA Canada Board and staff as well as
patients local to the area in which the Conference will be held. To date, the Committee
has secured the venue for the 2013 conference and is continuing to finalize plans as
the conference date approaches.
the Committee at [email protected].
2013 Conference Committee members
• Carolyn Pugliese, Chair
• Jamie Kretzschmar
• Genevieve Lively
• Shawna Brinkworth
• Rita Hebert (PHA Canada Board liaison)
• Angie Knott & Jennifer Gendron
(PHA Canada Staff liaisons)
Awareness and Fundraising Committee
Corporate Committee
This Committee is responsible for working
with PHA Canada staff on creating and
carrying out public awareness, education
and media campaigns. The Committee
is charged with finding creative ways of
engaging the PH community in awareness
and fundraising through the creation of
campaigns and special events. The Committee helps with organization of community
events.
The Corporate Committee was established in order to help PHA Canada build
relationships and create a level playing field
amongst all of the companies involved in
the treatment of PH. The purpose of the
Committee is to allow for a collegial and
unbiased relationship between the pharmaceutical industry and PHA Canada that
operates in the realm of our common interests for the benefit of the PH community.
Corporate Committee members are expected to participate in supporting PHA Canada
programs and projects beyond their annual
dues and receive requests for sponsorship
from PHA Canada on a yearly or per-project
basis (depending on their preference). They
are also expected to show a level of support
and commitment to the PH community
Current members*
• Frank Poon, PHA Canada President, Chair
• Rita Hebert
*This committee is currently seeking additional members, if you are interested in participating please contact
Current members*
• Lynn-Marie Cox, PHA Canada
Secretary, Chair
*This committee is currently seeking additional members, if you are interested in participating please contact
the committee at [email protected].
12
beyond monetary contributions. Other than
the member companies, PHA Canada’s
President, National Manager and the Chair
of the Medical Advisory Committee sit on
the Committee and act as liaisons between
PHA Canada and the Committee. Other
Board members may attend meetings if they
desire.
Current Members
• Shoppers Drug Mart Specialty Health
Services, Chair (2012/2013)
• Actelion Pharmaceuticals
• Eli Lilly
• GlaxoSmithKline
• McKesson Specialty
• Pfizer (Chair Elect)
• Unither Biotech
Medical Advisory Committee
The Medical Advisory Committee is a new
committee. It was formed in the last quarter
of 2012. Dr. Sanjay Mehta who has acted as
Medical Advisor on the Board of PHA Canada for the past three years, is the current
Chair of this Committee. The purpose of the
Committee is to act as an advisor to PHA
Canada on all medical issues, and to facilitate the development of knew knowledge
about pulmonary hypertension, develop
educational resources for medical and
public audiences and to advocate and raise
awareness about pulmonary hypertension.
Current members
• Dr. Sanjay Mehta, Chair, London, ON
• Dr. Ian Adatia, Pediatrics, Edmonton, AB
• Dr. Andrew Hirsch, Montreal, QC
• Dr. Ali Kapasi, Edmonton, AB
• Dr. Lisa Mielniczuk, Ottawa, ON
• Dr. Jakov Moric, Toronto, ON
• Dr. Steeve Provencher, Quebec City, QC
• Angie Knott, PHA Canada National Manager acts as the PHA liaison for this Committee
Operations & Finance Committee
Pediatric Committee
The Operations and Finance Committee, handles the behind-thescenes business for our organization. The Committee is responsible
for monitoring our budget and ensuring we keep things on track. This
helps us ensure consistent delivery of awareness programming, events
and information to our members. The Committee manages approvals
for small sums of money while funding for larger projects requires the
approval of the PHA Canada Board.
The Pediatric Committee was formed late in 2012 and is chaired by Dr.
Ian Adatia, Director of the Pediatric Pulmonary Hypertension Clinic
at the Stollery Children’s Hospital in Edmonton Alberta. To date, the
committee has met twice via teleconference and its current projects
are a review of materials available for children and families from PHA
USA in an effort to collaborate and create some Canadian materials
as well as the creation of more opportunities for families to connect
including upcoming conference opportunities in San Francisco and
Ottawa in 2013.
The Committee works hand in hand with our senior staff in order to
make sure that everything is running smoothly and that PHA Canada
continues to grow and develop according to our mission and goals.
This Committee is comprised of the Treasurer, President as well as one
to two additional Board members with a solid financial knowhow and
background.
Current Members
• Charanpal Brar, Treasurer, Chair
• Darwin Hanofski, Assistant Treasurer
• Frank Poon, President
• Maureen Tymkow, Board Member
Current members
• Dr. Ian Adatia, Chair,
• Janette Reyes, Nurse practitioner at Toronto Sick Kids hospital,
• Shannon Reitor, PH parent
• Bonnie Baskill, PH parent
• Tracey O’Blenis, PH parent
• Sarah Bell, PH parent
• Janie Kidd, PH parent
• Jennifer Gendron, PHA Canada Regional Coordinator, acts as the
Liaison for this Committee
Patient Support Committee
PH Health Professionals Committee
This Committee is responsible for programs and projects relating
to patient support. The Committee works with PHA Canada staff to
develop and implement patient support programs with the broad
goal of providing excellent patient support, increasing membership
and engagement of the PH community within PHA Canada, promoting the growth of chapters and support groups and outreach to new
patients. The Committee is responsible for identifying constituent
needs and helping find ways to meet them. They are responsible for
work on developing tools and materials to support patients and family
members.
This is a brand new Committee, which is currently in the process of
recruiting members and setting its terms of reference. This Committee, consisting of allied health professionals (nurses, pharmacists,
physiotherapists etc.) specializing in the field of PH, is responsible
for helping to create and review educational materials produced by
PHA Canada to assure their medical correctness, as well as providing
guidance on medical education programs and contributing articles for
our website and newsletters.
Current members
• Carolyn Pugliese, RN, Chair
Current members*
• Rita Hebert, Chair
• Ruth Dolan
Other potential members are currently being recruited amongst allied
health professionals. The Committee expects to have its first meeting
in early 2013.
*This committee is currently seeking additional members, if you are interested in participating please contact the committee at [email protected].
Scholarship Committee
The committee receives and reviews all requests for scholarships from our community. Each request is reviewed and determined based on an
individual basis and funds are awarded based on need. The overall Scholarship Fund is determined every year by the Board of Directors based on
recommendations of the Scholarship Committee and individual “up to” award amounts are also approved by the Board based on the recommendations of the Committee, these amounts are set for each conference/seminar/symposium etc. separately. The Committee’s membership
is kept private due to the nature of the decisions they make but is comprised of PHA Canada Board members and includes at least one patient
representative.
13
Our Community
Support Groups
Ottawa Support Group
London Support Group
Montreal Support Group
The Ottawa Support Group initially
took shape in the fall of 2011 when
an initial meeting was held at the
Ottawa Heart Institute. In November 2012, another meeting was held
in conjunction with the 6 Minute
Walk for Breath organized by Nurse
Coordinator, Carolyn Pugliese.
Since that time, the group has been
actively involved in fundraising
and awareness projects including
“Pennies for PH”. Future plans are
to develop or more structured group
that will hold regular meetings
led by a patient committee. For
more information contact Jamie at
[email protected]
The first meeting of the London
Support Group was held in March
of 2012 with the support of the
London PH Clinic. This group has
continued to thrive and meets on
the second Saturday of each month
in the local area. For more information contact Grace at
[email protected]
The Montreal Support Group is
based out of the Jewish General
Hospital in Montreal. It is organized
and led by a group of patients and
family members. The group has
held “Walk for Breath” events at
the Montreal YMCA for the last
two years bringing out over 100
participants each year. Funds raised
from these events go to support the
Jewish General Hospital. This group
has also gotten involved in other
activities including “Pennies for
PH” and patient meetings. For more
information contact Lyda Lesenko,
PH program nurse coordinator at
[email protected]
Saskatchewan Support Group
Manitoba Support Group
Victoria/Langford BC Support
Group
The Saskatchewan PH Support
Group was formed in the fall of
2009 after several patients first
found each other through a Canadian PH conference. The group has
evolved from its humble beginnings
of only a handful of members to a
larger group consisting of patients,
families and caregivers. Today, the
group meets on a monthly basis in
Saskatoon. For more information,
please visit their website at www.
phsask.ca or email [email protected]
The Manitoba Pulmonary Hypertension Support Group meets on
the second Tuesday of each month
at the Health Sciences Centre,
Room GC303. The group welcomes
anyone who has been touched by
PH, whether it is a patient, family
member, friend or caregiver. The
group offers support to one another
as well as answering questions and
providing advice to newcomers. For
more information or to contact the
group, please visit their website at:
http://mbphsupportgroup.webs.com 14
This group meets the 4th Wednesday of every month at 1:00pm, at
Evedar’s Bistro & Cappuccino Bar
in Langford, BC (everyone buys own
lunch). For questions or additional
information email Jas at
[email protected].
Chapters
Toronto Chapter
Southern Alberta Chapter
Atlantic Canada Chapter
The Toronto Chapter of PHA Canada
is led by Co-Leaders Ruth Dolan and
Loretta Chu. The group has been
active in the Toronto area for the
past 4 years and meets regularly on
the first Saturday of each month.
This is a very active group that
engages in a number of fundraising
and awareness events throughout
the year. Their biggest event is their
annual “Let Me Breathe – Vegas
Night” fundraiser which has been
held for the last four consecutive
years at Brebeuf College under the
direction of Paul Adams, Rosemary
Lavery and their team. This event
has raised close to $50,000 for PHA
Canada over the last four years.
The Southern Alberta Chapter is
dedicated to helping patients and
their families/friends in the Southern Alberta live with Pulmonary
Hypertension. The goals of the
Chapter include providing patients
and family/friends with support (via
telephone, email and meetings),
increasing awareness of PH and
sponsoring educational sessions.
Monthly support group meetings
are held in Calgary for patients, family members and caregivers. Meetings are held at the Louise Riley
Library located on the west side of
North Hills Shopping Centre on the
last Tuesday of the month from 7:00
to 8:45 pm. The goal of the group
is to implement three educational
sessions per year. All are welcome
to come and join.
The Atlantic Canada Chapter, started
as the New Brunswick PH Society
(NBPHS) and was formed in 2005
by Jennifer Gendron, the parent of
a child with PH with the purpose
of supporting those living in New
Brunswick and Atlantic Canada.
Jennifer was a key player in the
founding of PHA Canada and was
one of its founding board members,
she has now taken on the staff role
of Regional Coordinator. NBPHS
chose not to seek charitable status
because of the founding of PHA
Canada and instead in 2010 became
the Atlantic Canada Chapter of PHA
Canada.
For more information, please visit
their website at www.phatoronto.ca/
TorontoChapter or email
[email protected]
For more information visit
www.phacanada.ca/AtlanticChapter
For more information visit www.phacanada.ca/SouthernAlbertaChapter
Affiliates
British Columbia Pulmonary Hypertension Society
(BCPHS) was formed in 2001 by
Elizabeth McCall, and received charitable status in 2006. Liz was instrumental in the movement towards a
national organization and was one
of the founding board members of
PHA Canada. BCPHS organizes a
yearly symposium, participates in
fundraising and awareness activities
and, until Liz’s passing in 2012,
published a regular newsletter “PH
Way”. For more information on
BCPHS, please visit their website at
www.bcphs.org or email
[email protected]
BCPHS became an affiliate member
of PHA Canada in 2010.
Edmonton PAH Society
Fondation HTAP Quebec
(EPAHS) was formed by a group of
patients to give support to all people living with Pulmonary Hypertension in Edmonton and surrounding
areas served by the U of A Hospital
and the Pulmonary Hypertension
Program. In June 2010 EPAHS
became a Registered Charity. The
Society is involved in Awareness
Campaigns, Forums, Support
Group Meetings, and fundraising
events. Meetings are held every
second Monday of the month at the
University of Alberta Hospital. For
more information, please visit their
facebook page at: www.facebook.
com/EdmontonPAHSociety or email
at [email protected]
La Fondation HTAP Quebec is a
non-profit organization, which was
founded by the Cormier family and
registered in 2006. This group is an
affiliate of PHA Canada and we work
closely together. Since its inception,
the Foundation has been involved in
many fundraising and awareness projects and continues to offer support
to patients in Quebec. Their most
popular fundraising event is their
cheese sale which continues to grow
every year. They also hold an annual
garage sale which raises a great deal
of funds to support patients in the
Quebec region. This group has also
run three large patient conferences catering to the francophone
population. For more information
on the Foundation, please visit their
website at www.htapquebec.ca or
email [email protected].
EPHAS became an affiliate member
of PHA Canada in 2011
HTAPQ became an affiliate member
of PHA Canada in 2012.
15
IN MEMORIAM
While we celebrate our successes, our growth and the achievements the community has made in a short amount of
time, we still have a lot of work to do. The field of PH has made many advances and our community is lucky to have
many dedicated medical professionals who are working tirelessly to do research into new and better treatments and
a cure for PH. We have so much hope; hope that not long ago many did not have. But we still lose beloved members of our community far too often.
We would like to take a moment to honour the lives of those who have lost their battle with PH. As we learn of those
who have passed, we will share their names* with the community at the end of each year so that their memory may
live on forever**.
PHA Canada extends our deepest sympathy to the families and friends of those who are gone but who will forever
live on in their hearts and minds. We dedicate this publication to the memory of those who have passed on. We
continue to work to unite the community and make a better life for those living with PH, and do so in a way that
keeps the memory and legacy of those who have come before, alive, so all those who come after her may know the
trail they blazed for them.
Life is eternal, and love is immortal,
and death is only a horizon;
and a horizon is nothing save the limit of our sight.
~Rossiter Worthington Raymond
2008
Jo Ann Lynn Bottrill
Marion Gallinger
Carol Klassen
Merle Roddick
Agnes Feniuk
Edmond Hebert
Wendy Lean
Eunice Shepansky
Maria Font
Gracie Holmes
Lise Morrisette Cormier
Beverley Winoski
2009
Lea “Olie” Alksne
Rita Durand
Eleanor Haynes
Ginette Rousseau
Karen Baker
Elizabeth Ensworth
Tani Koppelman
Thomas Anthony Thielk
Shirley Ann Capp
Giuseppe “Joe” Fasullo
Tristan Jean-Philippe Logan
Diane Watson
Micheline Cousineau Forget
Elaine Fox
Erin Riddle
Lorne Wilson
Wolfgang Denne
Joan Grant
16
2010
Philip Burman-Martin
Shirley Verna Hoey
Vera McPhail
Maureen Rabeyt
Lillian Byers
Robert Jennings
Phyllis Moore
James Hayward Rowswell
Albert Carrier
Leslie Komlosy
Paul Perron
Mary Suttle
Julie Dempsey
Lorna MacKenzie
Francis Phaneuf
Leah Trapp
Michelle Essiambre
Vera Manuel
Hector Poirier
Vassily Vallée
Roy Fell
Margot Matzick
Jean-Guy Quenneville
Gloria Wiebe
Joan Grant
2011
Jane Adamson
Eileen Bennett
Yvette Duchesne
Denis Moore
Eugenia Anderson
Lynda Bériault
Roger Hudon
Guylaine Morin
Genie Anderson
Helen Chambers
Elizabeth Kimmerly
Jean Morisseau
Madeleine Beauchemin
Isabelle Cormier
2012
Robert William Anderson
Pierre Duclos
Laurence-Émilie Mainville
Valérie Roy
Leonard Braun
Ruth Gagnon
Elizabeth McCall
Victoria Smith
Helen Chambers
Denis Gaumont
Tristan Roman Mero
Paul Roger Tucker
Linda Doucette
Lisa Gress
Rozanna Neufield
Collette Villemaire
John Downs
Madeleine Lemieux
Gerry Pirotton
Year unknown or between 2006 - 2007
Joseph G. Beaulieu
Audrey Burnett (2006)
Pierrette Martineau
Lorette Morency
Dylan H. Bell (2006)
Suzanne Marquis
Andréa Massicotte
Martine Rivest
* if you lost a loved one during this time period and his/her name does not appear below, please let us know so that we can list their name in next year’s issue.
**as this is the first issue we are including each person of whom we know since 2008 (PHA Canada’s first year of operation) as well as those whose names were sent
to us but the date of passing was unknown or was between 2006 and 2007, in subsequent years we will list those who have passed since the previous Annual Report.
17
Sincere Thanks to Our Community
Thank you for your continued support and commitment to PHA Canada and the PH community. We are
thrilled to see our community grow and become increasingly engaged. We are looking forward to a very
exciting 2013. We have some great new programs planned and we hope that you will continue to get
involved in and plan activities to help support the community and educate the public about pulmonary
hypertension.
On behalf of the Board of Directors and Staff of PHA Canada, we wish you and your family a joyous holiday
season and all the best for the New Year.
18