This November, celebrate the growth of the PH community over
the last 15 years by participating in at least one Awareness Month
activity!
PH, like other rare illnesses, frequently leaves patients and
caregivers feeling isolated and alone. Often, people don't believe
that those living with PH are really sick. It can be challenging
to find and connect with other PHers in a particular area.
Since its foundation by four dedicated women in 1990, PHA members
have worked together to end that sense of isolation. They have
formed support groups, spoken out about PH in their communities,
and even talked with their legislators and the press. Because
of their efforts, awareness about PH has grown around the country
and the PH community now includes thousands of active members.
However, there is more that can be done.
Each November, the PH community celebrates PH Awareness Month.
This is a special time to focus our energy around raising awareness
of PH and support for the PH community. This November, celebrate
15 years of ending isolation and raising awareness. Participate
in one of the activities below, or create your own!
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One of the easiest ways to take action for the PH community
is to become a member of PHA. Individual membership dues are
just $15 dollars/year. Commemorate 15 years of PH progress with
this easy pledge. Not sure if you're a member? Call Jeannine
at 301-565-3004 x108 to find out.
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PHA is looking for 15 volunteers to participate in the Circle
of Friends letter writing campaign this fall. Help us reach
our goal!
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Building media attention helps educate people around the country
about PH. Media attention also helps generate funds and political
support for PH research. Educate your local media about PH through
PHAware.
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Call, write, or visit your U.S. senators and representative
to tell them about the legislative priorities of the PH community.
Betty Lait, the leader of the Western Pennsylvania support
group had a very successful visit to Representative English
while he was working in his home district during summer recess.
Betty and her support group co-leader collected 100 letters
from her friends and neighbors urging Representative English
to support the PH Research Act. They presented the letters
to him at a local town meeting. He agreed on the spot to support
the PH Research Act.
What better way to celebrate the PH community then by bringing
it together for a Fun Walk? These are fundraising, awareness
raising events that everyone can participate in.
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Spread awareness by acting as a workplace ambassador-encourage
your workplace to include PHA in their United Way or Combined
Federal Campaign.
PHA offers financial support to first time special event organizers.
Have you had an idea for a special event that you just didn't
think you could afford? This November, apply for a $1,000 seed
grant to make your PH event a reality. Call PHA at 301-565-3004
for more information.
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Get a jump-start on Awareness Month by attending one of the
medical
education sessions being held around the country this fall.
- Survival Guide & Materials Promotion (Encysive)
- PHA Congressional Luncheon (Actelion)
- PH Diagnosis DVD (Myogen)
- Heart of the Matter DVD (Myogen)
- Expanding PHA's Spanish Language Program (Pfizer)
- Support Group Seed Grants (CoTherix)
- Poster (United Therapeutics)
- Membership Campaign Co-sponsorship (Pfizer)
- Action Kits (Actelion)
- Press Kits (Actelion)
- T-shirts (Encysive)
- How to Develop a National PH Association booklet (Pfizer)
