PHA News
In This Issue
Congressional Luncheon Update
Apply for a Conference Scholarship
Awareness Month is Here
Apply for the Lantos Grant for PH Awareness
PHA UK Announces Winner of the Lips of 2010 Campaign
Thank You, October Special Events Organizers!
PH Parents Team Up with Local Salon for Fundraising Success
Lead the Path to a Cure in your Town
Call for Abstracts at Conference!
PH in the News
PHA is Coming to Your Area!
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Upcoming Events
  
9th Annual Race Against PH
Nov. 1, 2009
Palo Alto, Calif. 
 
Pulmonary Hypertension: Patient Education Day 
 Nov. 6, 2009
Chapel Hill, N.C.
 
PHA Dinner/Wine Tasting Fundraising Event 
Nov. 7, 2009
St. Louis, Mo.
 
Travis County PHun Walk
Nov. 7, 2009
Austin, Texas
 
Baltimore PH Walk for Hope 2009
Nov. 7, 2009
 Baltimore, Md.
 
An Evening of PH Awareness
Nov. 7, 2009
Salt Lake City, Utah
 
 Arizona Cure PH Casino Night
Nov. 7,  2009
Phoenix, Ariz.
 
8th Annual PH Awareness Luncheon and Conference
Nov. 8, 2009
Lansing, Mich.
 
PH Awareness Month Reception
Nov. 9, 2009
Orlando, Fla.
 
Second Annual South Florida Funwalk
Nov. 14, 2009
Pompano Beach, Fla.
 
3rd Annual North Texas PH Funwalk
Nov. 14, 2009
Euless, Texas
 
A Vegas Fundraiser in Support of PH
Nov. 14, 2009
Toronto, Canada
 
Passionate Hearts for Pulmonary Hypertension (PH for PH)
Nov. 15, 2009
Pittsburgh, Pa.
 
 
Vol 10/Number 22 October 30, 2009
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
Reaching over 6,500 subscribers
www.PHAssociation.org
CONGRESSIONAL LUNCHEON UPDATE
 
The location of our Congressional Luncheon has changed since the last issue of PHANews. It will now be held in the Members Room of the Library of Congress.

The Luncheon will still take place on Wednesday, Nov. 18 -- less than three weeks away! Please invite your members of Congress if you haven't already, or, if needed, inform them of the new location.

For more information, contact Katie at Advocacy@PHAssociation.org or 301-565-3004 x749.
APPLY FOR A CONFERENCE SCHOLARSHIP

Applications Online Monday! 
Conference attendeesPHA works hard to keep the cost of Conference affordable for everyone. However, PHA knows that sometimes patients need additional assistance. The Conference Scholarship Fund provides this help.

Scholarship applications go online this Monday, Nov. 2, and will be available through April 30, 2010, but patients are advised to apply early.

 
Give the Gift of the Conference Experience

The number of patients PHA can assist through the Conference Scholarship program depends entirely on the generosity of contributors. PHA is grateful to these individuals and companies who have pledged their support for the 2010 Conference Scholarship Fund:

  • Barbara Smith Endowment Fund, contributed by the Smith Family
  • Mason Hoffman Endowment Fund, contributed by Dale Hoffman
  • Michelle Carr Memorial Fund, contributed by Richard Carr
  • Actelion Community of Hope Fund, contributed by Actelion Pharmaceuticals
  • Pfizer Community of Hope Fund, contributed by Pfizer, Inc.
 
If you have questions, contact Jennie Carman at Scholarship@PHAssociation.org or 301-565-3004 x743.
AWARENESS MONTH IS HERE!
Join the Worldwide PH Awareness Effort this November

Awareness Month skaterNovember is PH Awareness Month, and the PH community has been preparing in so many ways!

PHers are securing Awareness Month proclamations, generating media coverage and setting up awareness tables across the U.S. PH blogs, Facebook updates and Twitter feeds are spreading the word around the world.

Join the action on PHA's Awareness Month webpage:

PHA's staff is always available to assist you with your Awareness Month plans. Contact Katie at 301-565-3004 x749 or Awareness@PHAssociation.org.
APPLY FOR THE LANTOS GRANT FOR PH AWARENESS
Awareness of PH is vital to ensuring that patients are being diagnosed and treated correctly and effectively. 
 
Do you have an idea of how to increase awareness in your community?  If so, you should apply for a Tom Lantos Innovation in Community Service Award. We'll be awarding up to ten $5,000 grants and the deadline is November 30.
 
PHA-UK ANNOUNCES WINNER OF THE LIPS OF 2010 CAMPAIGN
Hundreds of pulmonary hypertension patients, family members and friends uploaded pictures of their best puckering faces for PHA-UK's Lips of 2010 contest. After narrowing the choices to 30 contestants, the public voted for the best photo.

We won't give away the winner's name here, so visit the contest website and see for yourself!
THANK YOU, OCTOBER SPECIAL EVENTS ORGANIZERS!
From walks to awareness-raising exhibits, from a comedy/variety show to a neighborhood Halloween fair, this month's Special Events were as vibrant as the autumn foliage!

PHA Special Events raise awareness, unite local communities and bring us all closer to a cure. We thank our volunteer event planners, new and returning, for their time, talent and enthusiasm.

  • 5th Annual New York Funwalk for PH - East Meadow, N.Y.
  • 6th Annual Georgia Funwalk - Marietta, Ga.
  • PHA Raffle at the Idaho Expo - Boise, Idaho
  • Through Tears Comes Laughter - Charlotte, N.C.
  • Everyone Loves a Pumpkin Patch - Anaheim, Calif.
To learn about more unique Special Events, read our story below about PHA's first-ever Cut-a-Thon and visit our Special Events page.
PH PARENTS TEAM UP WITH LOCAL SALON FOR FUNDRAISING SUCCESS
getting a trim at the cut-a-thonWhat's the secret to a successful first fundraiser? Mitzi LaBarge, mom to 3-year-old PH patient Ava, advises choosing a catchy idea. 
 
Together with her friend, salon owner Sarah Lowell, Mitzi and her husband Geoff held a five-hour-long cut-a-thon in their hometown of Bridgton, Maine. Sarah and stylist Liza Chase gave haircuts for donations, raising nearly $1,400 and much-needed PH awareness.
 
Read more online
LEAD THE PATH TO A CURE IN YOUR TOWN

Mt. KilimanjaroBreathing less than 50% of the oxygen that is normally at sea level, Drs. Ray Benza and Robert Frantz will stand atop the 19,330 foot Mount Kilimanjaro in February 2010 to raise awareness and funds for PH. 
 
However, even from the rooftop of Africa they can't spread the word about PH without your help. Organize your own Unity Walk to show solidarity with the climbers and raise awareness of PH.
CALL FOR ABSTRACTS AT CONFERENCE!
Medical ProfessionalsThe Conference Scientific Sessions Committee is seeking abstracts in the areas of clinical science (including treatment) and basic science. Authors whose abstracts are accepted will be invited to share their work at the poster session of the 2010 International PH Conference and Scientific Sessions on June 25-27, 2010, in Garden Grove, Calif.

Authors of the top four abstracts selected will have the opportunity to give oral presentations of their abstracts during the Scientific Sessions. The the top two abstracts will receive an award. Summaries of the oral presentations will appear in a future issue of Advances in Pulmonary Hypertension. PHA encourages (but does not require) the submission of original abstracts.

Submission Deadline:            March 10, 2010
Notification Date:                   April 16, 2010

PH in the NewsPH IN THE NEWS
UC San Diego Researchers Reverse Pulmonary Arterial Hypertension in Mouse Models
(EurekAlert!) - Researchers at the University of California, San Diego, have identified a key protein that promotes the development of pulmonary arterial hypertension in humans and mice. This groundbreaking discovery has implications for future drug therapies that may extend the life of patients with pulmonary arterial hypertension and prevent the need for lung transplantation, currently the only cure for this debilitating disease. Read article 
 
First Drug for Scleroderma Treatment Maybe on Horizon
(eMaxHealth) - Until now, no drug has been found to be effective for treating scleroderma. Results of a new study to be presented at the annual meeting of the American College of Rheumatology in Philadelphia on October 18 may change that. Read article 
 
Sutton Pensioner Still Going Strong 21 Years After Heart and Lungs Transplant
(This Is Local London) Sutton, UK - A pensioner has defied the odds to live over two decades after a heart and lungs transplant. Read article
PHA IS COMING TO YOUR AREA!
Mark Your Calendar for These Upcoming Building Medical Education in PH Events

For Medical Professionals, Patients and Caregivers
Nov. 20-21, 2009 - Cleveland, Ohio
Cleveland Clinic

Pulmonary Hypertension Summit: Translating Discoveries Into Patient Care
This two-day summit will cover the basics of the pathobiology of PH, advances in clinical PH evaluation and updates on therapy options. Patient-oriented sessions will be available in addition to case-based sessions for medical professionals. CME credits are available. PH patients and their families are invited to attend for free but must register in advance. Learn more online or call 216-445-5763.

Dec. 4, 2009 - Cambridge, Mass.
Tufts Medical Center

Seventh Annual Update in Pulmonary Hypertension
This CME course will consolidate current knowledge and avenues of investigation to educate participants, explore new areas of inquiry and analyze the state of knowledge in the field. Patients and their families are also invited to attend. Learn more online or call Gail Varcelotti at 412-370-1749.

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.