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| Upcoming Events |
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Update in PH Medicines
February 19, 2008 North Richland Hills, Texas
10th Annual (& Final) Golf Tournament
Apr. 25, 2008
Spring, Texas
1st Ever Cure PH Bug Boil
Apr. 26, 2008
The Woodlands, Texas
Fun Walk for a Cure April 26, 2008 Brentwood, Tenn.
1st Annual Wojo Golf Classic
July 21, 2008
Southern California
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| Vol 8 /Number 25 |
December 14, 2007 |
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| PH PARENT LOBBIES 111 MEMBERS OF CONGRESS |
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 From December 4-6 of this year, PHA board member, PH parent and PH advocate extraordinaire, Carl Hicks, hit the halls of Congress with one goal: to visit as many co-sponsors of the PH Research Act of 2005 as possible and ask them to re-commit and co-sponsor the PH Research and Education Act of 2007. At the start of his lobbying marathon, Carl had breakfast with Shannon Scott, a lobbyist with PH in her family. He went on to visit 111 Members of Congress in two days. As a result of Carl’s visits and the involvement of many PH community members, the PH Research and Education Act gained 28 co-sponsors in two weeks, brining total co-sponsorship for the bill up to 41.
The results of Carl's meeting with Shannon and their joint efforts on Capitol Hill were tremendous. Here is how Carl describes the experience, "After meeting Shannon Scott on Tuesday morning for breakfast and hearing her heart-wrenching story of having 17 family members stricken with PPH and 12 of them lost, I vowed to dedicate the couple of days of congressional office visits to Shannon, the mother she lost to PH and her entire family. It motivated me to work extra hard, and through long days I was able to make that record 111 visits in two days. Many staffers stated they didn't even know the bill had been reintroduced and were very pleased I brought it to their attention. Shannon herself joined me for the first time and visited the last 10 offices with me, immediately showing an expertise in lobbying that far exceeded any capability that I could ever have."
Read the story about Carl's inspiration, his daughter Meaghan Hicks, below |
 PH FAMILIES SHARE THEIR STORIES WITH THE MEDIA FOR AWARENESS MONTH |
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 Bailey Brewer
Three year old PH patient Bailey Brewer's parents, Brian and Melissa, submitted an article to their local paper sharing the story of their daughter's remarkable journey and raising awareness about PH for Awareness Month. Read their story and view pictures
Meaghan Hicks
Meaghan and her parents, Carl and Mary Jan, shared with their local paper the story of her recent double lung, heart transplant surgery and raised awareness about PH. Carl fights for a cure for his daughter as a heavily involved member of the PHA community. He is a PHA board member, lobbies Congress ( see story above), and is a popular speaker at PHA events, like the recent PH Resource Network symposium. Read the story about Carl's inspiration, his daughter Meaghan
Share your story with the media through the PHAware program. Learn more in the Media Corner below |
| MEDIA CORNER
A December Spin to Approaching the Media |
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Holidays and PH (pha la la la laaa...)
 Awareness Month 2007 has finished, but we need to continue raising awareness about PH year round! As the holiday season comes into full swing, here are some holiday-focused questions you can consider when you think about what to say when you approach your local reporters this month:
- Travel - how does your PH treatment impact your travel plans?
- Energy - most people exert themselves during the holiday season. How does having PH impact your energy level while you prepare for and celebrate the festivities?
- Weather - does cold weather have more of an impact on your activities?
- Diet - Are you limited in the types of holiday foods you are able to eat because of your medications?
- New Years resolutions - Does having PH bring you to any unique resolutions? You can recommend that readers and viewers adopt a resolution to donate to a charitable organization like PHA. You could also ask your town or country to make a PH-focused resolution, like a proclamation that recognizes PH as a concern for the community. More information on proclamations
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| MORE AWARENESS MONTH EVENTS TO REPORT ON! |
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HOPE FLOATS! Lavender Balloon Release in Honor of Caitlin Barley
In Alabama, a balloon release event called "Hope Floats" raised over $4,000 for research. Participants bought lavender balloons to release, and the "PHenomenal Hope" bracelets became the new fashion craze, with over 300 sold. Long after the bracelet supply had run out during the event, money was still being collected for bracelets to be ordered by mail later that week.
Stanford Race Against PH
 The 7th Annual Race Against PH was the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford's most successful to date. More than 1,000 participants and donors helped to raise over $64,000 for pulmonary hypertension. The funds raised will benefit the Ewing Family Fund for PH Research at Stanford and the Pulmonary Hypertension Association. Read story and view inspiring photo album
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| NEW PH FACT SHEETS POSTED ONLINE |
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| PH SCARVES FOR KATRINA VICTIMS |
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 Several months ago 4 'PH'riends, Amy Stamp, Maggie Bonatakis, Patty Farrow and Annette Markin decided to work together to help their community by making scarves for the needy. They knitted and crocheted 30 scarves in all and labeled each with the message, "Made Especially for You by the PH Community." Learn more and view pictures |
 PH IN THE NEWS |
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A Children's Book Every Adult Should Read
(Easier Lifestyle) United Kingdom -- A new children's book tackles the tricky subjects of severe illness and death through the eyes of a nine year old whose Nana is dying of the rare illness, Pulmonary Hypertension (PH) and a Stroke. In My Nana Is An Alien, acclaimed children's TV scriptwriter & producer, Diane Whitley manages to convey, with humour and compassion all the fears and doubts that any child might have when things haven't been explained to them properly leaving their imagination to run wild.
Promising New Treatment for Pulmonary Hypertension
(King 5 News) -- Pulmonary hypertension is a serious, often fatal disease that causes the lung's delicate blood vessels to become smaller and disappear. Eventually, the heart has to work so hard that many patients die of heart failure. Now, Canadian doctors are using gene therapy to heal the damaged vessels.
Read article |
| FIRST MATCHING GIFT CHALLENGE WITHIN REACH |
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Your $1 Donation Could Become $3
 This fall, Actelion presented PHA with a challenge we couldn't refuse! The company agreed to match the first $25,000 donated to our end of the year campaign two-to-one. That means that every dollar you donate becomes three dollars!
Thanks to an outpouring of generosity from our community, we are close to meeting Actelion's challenge, generating $75,000 to support our fight against PH. Once we meet that goal, Gilead will match the next $20,000 donated by our constituents one-to-one. All together, $45,000 in donations from people like you will generate $115,000 to support the advocacy, education and patient support services that matter so much to PH patients.
Every dollar counts! We hope you will consider a donation to the end-of-year campaign.
Donate Now
Please be sure to click on the button that says "2007 Annual Report mailing/email alert" under Donor Designation so we can assure that your gift is counted for a matching donation. |
 PH RESEARCH GRANT DEADLINES APPROACHING |
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Looking for information on research grants in the field of PH? Check out the Research Grant web section
This informative page includes information on PHA's three research grant programs and others, including the most upcoming PHA research award program deadline:
PHA's 2007 Postdoctoral Fellowship Awards
Application Deadline: January 24, 2008
Award Activation: July 2008
Also included on the page are other upcoming research grant deadlines, including the 2008 Entelligence Young Investigators Award Program (Deadline: December 31, 2007).
More information on these awards and others |
| AUDIO AND VIDEO PODCASTS FROM 2006 NIH PH CONFERENCE AVAILABLE ONLINE |
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Audio and Video Podcasts from the 2006 NIH Conference, "Evolution of Pulmonary Hypertension: Emerging Diseases and Novel Therapeutics," are now available online.
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| USE YOUR IRA TO FIGHT PH IN 2007 |
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The rare opportunity to give up to $100,000 directly from your IRA to charity without increasing your taxable income ends on December 31, 2007. This provision of the Pension Protection Act of 2006 applies if you have reached the age of 70 1/2. You may also count your gift towards your required minimum distribution.
This is a great way to make a gift to fight PH that will be matched as part of our end of year campaign ( see story above). To learn more, please contact Andrew Horowitz at 301-565-3004 x116 or giving@PHAssociation.org.
Please check with a qualified advisor to see if IRA giving is right for you. |
| NEW JOURNEYS DVD IN PHA STORE |
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 This DVD includes excerpts from the 2004 and 2006 Journeys Luncheons, as they are an integral feature of our International PH Conferences. At every Conference since the first in 1994, Journeys has served to dissolve barriers between patients and medical professionals. Several doctors are each invited to present on a case of their choice. Those cases are people. As patient and doctor share their experiences, what invariably emerges is a story of relationships and a very human side of medicine.
Cost $10 each | |
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