PHA News
In This Issue
New England PHA on the Road
PHA'S Educational Programs Now All in One Place Online!
New Information on Transplant Available!
Raising Local Awareness
PH Support Groups
Useful Info From a PH Pediatrician
PH in the News
Building Medical Education in PH
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Spur a Cure 2009
May 2, 2009
Phoenix, Ariz.
 
Beef and Beer Fundraiser
May 8, 2009
Philadelphia, Penn.
 
 2nd Annual Bocce for Better Breathing
May 9, 2009
Medford, Mass.
 
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May 16, 2009
West Jordan, Utah
 
 2009 Carolina's 5K PH Run/Walk for a Cure
May 17, 2009
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May 23, 2009
Wappingers Falls, N.Y.
 
2nd Annual Driving "Fore" A Cure
June 8, 2009
Danville, Calif.
Vol 10/Number 9 May 1, 2009
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SPOTLIGHT ON NEW ENGLAND PHA ON THE ROAD FORUM
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 Join PHA in Warwick, R.I., on Saturday, June 13, at the Crowne Plaza Hotel for the fourth of the 2009 PHA on the Road: PH Patient and Families Education Forums!
 

 Specialized session topics at this event include:
  • "What Is On the Horizon for PAH? (Clinical Trials)" with Harrison W. Farber, M.D.
  • "PH and Other Associated Conditions" with Terence Trow, M.D.
  • "What Are the Current Treatments for PAH?" with Myung Park, M.D.
  • "What Can I Do to Improve My Well Being?" with Barbara Smithson, R.N., B.S.N., M.S.N.

Hear firsthand experiences with PH during the "Journeys" Luncheon, a PHA Conference favorite featuring Edward Catherwood, M.D., James Klinger, M.D. and their patients. In the afternoon, attendees can participate in "The Right to Fight Back," a session on how individuals can promote PH awareness. Additional sessions will discuss travel concerns, insurance issues and much more!
 
A complete list of speakers and topics can be found on the PHA on the Road webpage. Registration is FREE but required. Register online

WANT TO LEARN MORE ABOUT PHA ON THE ROAD?
 
Then check out this interview with Arlene Schiro, N.P., chair of PH Resource Network. Arlene shares why she's looking forward to PHA's newest series of cross-country educational forums, and explains how both patients and medical professionals can get involved!

For more information on any of the four 2009 PHA on the Road Forums, contact PHA at ontheroad@PHAssociation.org or 301-565-3004.

LEARN FROM THE EXPERTS: PHA'S EDUCATIONAL PROGRAMS NOW ALL IN ONE PLACE ONLINE!

Whether seeking out programs in e-Learning, Online University, medical education programs or more, you can now see all PHA's educational programs at our new Education Program section online.
 
PHA is dedicated to providing educational opportunities for patients, family members and medical professionals to learn about different aspects of PH from experts in the field. These programs also provide a forum where patients and caregivers can learn from each other as well as interact with PH specialists. 
 
Find out what learning events are taking place by going to our new Education Program section online!
NEW INFORMATION ON TRANSPLANT AVAILABLE!

The SLC Education Committee has developed a new fact sheet about transplants, which can be found on PHA's transplant webpage. Included is information about preparing for a transplant, the surgical procedure, and life post-transplant.
 
There is also a section for friends or families of individuals considering or undergoing transplants. The fact sheet includes information on donation, pediatric transplantation, and a discussion of the impact of the transplantation process on the caregiver.
 
Check out this great new online resources today!
MEMPHIS SUPPORT GROUP LEADER RAISES AWARENESS ON LOCAL TELEVISION SHOW
When it comes to raising awareness of pulmonary hypertension, acts both great and small go a long way. This month, support group leader Barbara Thompson and PH physician Dr. William Novick scored big for PH awareness on a local TV talk show.
 
On April 8, Barbara and Dr. Novick filmed an episode of the Loretta McNary Show to educate the public and share experiences from the life of a PH patient. You can view Barbara's slideshow on YouTube of the filming set to PHA's theme song.
 
Thanks to Barbara, Dr. Novick and all members of the PH community who dedicate their time to raising awareness, we get one step closer to beating PH every day. To learn how you can raise awareness of PH through the media, visit the PHAware Campaign webpage or contact Katie at Katherine@PHAssociation.org or 301-565-0753.
PH SUPPORT GROUPS INCREASE OUTREACH TO KEEP GROWING MEMBERSHIP INFORMED

PH Support Groups are raising awareness of PH while also growing steadily in membership. Updates PHA has received from the PH support group community include:
  • Wyoming support group leader Nancy Stearns produces a newsletter to keep her members informed and connected. Click here to view the most recent newsletter as well as past newsletters.

  • SG leader Barbara Nickels of Colorado tells us her group is growing and provides needed support to patients. She said:

    "Thankfully our group continues to grow steadily and with much enthusiasm ... we had 23 to hear about the latest oxygen equipment. The previous presentation by a team of the University of Colorado Hospital clinical nurses was an educational session followed by an enthusiastic Q&A period. We were thrilled to have 43 in attendance and many remained for a length period beyond the schedule to visit and exchange information.
     
    Our main purpose, of course, is to educate and give the badly needed support and encouragement. Whether it is in person or via phone and written information, we are available. Often it is a shoulder to lean on or the sharing of information and the knowledge that there are 'others' who share your experience. Knowing there are treatments and belief that a cure is on the way, means a lot to all of us. We are so very thankful for the devoted PH Association that brings it all together."

Click hereto see a photo of the group and contact the leader.
 
Do you have an update from your Support Group that you would like to share with the PH community? Contact Debbie, PHA's Director of Volunteer Services, at debbie@phassociation.org to share your personal, and local PH communities,' story.

USEFUL INFO FROM A PH PEDIATRICIAN

Dr. Erika Berman Rosenzweig answered questions about how to cope as a youth with PH and raising a young PH patient at PHA's April e-Learning Event. 
 
Read the Ask a Pediatrician transcript | View other e-Learning Events archives

Coming in May!
Simple Safety Tips for Summer
 
PHA monthly e-Learning Events series is made possible through unrestricted educational grants from Eli Lilly & Company and Pfizer Inc.
PH IN THE NEWS
Cure Pulmonary Hypertension Fundraiser Resuscitated
(woodlandsonline.com) -- The Cure PH Bug Boil is rescheduled for Saturday, May 9, from 1-5 p.m. at Town Green Park in The Woodlands. The event will serve Cajun cuisine, including crawfish and alligator. Read article
 
Bosentan (Tracleer®) Receives Positive CHMP Opinion For Pediatric Formulation
(tradingmarkets.com) -- The Committee for Medicinal Products for Human Use has issued a positive opinion for Actelion Ltd.'s pediatric formulation of Bosentan (Tracleer®) for the treatment of pulmonary arterial hypertension. Currently, no drug is indicated for the treatment of PAH in children below 12 years of age; once licensed, Bosentan will be the only PAH treatment with a pediatric formulation. Read article
 
Lung Transplant in Children With Cystic Fibrosis
(advanceweb.com) -- Studies suggest that transplantation in Cystic Fibrosis patients should occur when the patient has oxygen-dependent respiratory failure, hypercapnia or pulmonary hypertension. If the sickest patients are identified, referred and receive lung transplants, the number of deaths of patients on waiting lists would be reduced. Read article
 
Ask Dr. H: Pulmonary Hypertension Explained
(philly.com) -- What is pulmonary hypertension? Mitchell Hecht, medical columnist for the Philadelphia Inquirer, answers the question in his Monday, April 27, post. Read article
 
What is a hole in the heart?
(health.asiaone.com) -- A hole in the heart is the common name given to congenital heart defects in the wall of the heart. If left untreated, this may lead to pulmonary hypertension. Read article
BUILDING MEDICAL EDUCATION IN PH

3rd Annual Pulmonary Hypertension Symposium
June 4, 2009 - Hartford, CT
Yale University School of Medicine
 
This one-day symposium is intended to heighten awareness for practitioners of the proper approach to treat and diagnosis PH patients. Sessions will focus on comprehension and application of the World Health Organization's classification system, particularly for patients with WHO class II and III ph.
 
Course faculty will include Raymond Foley, D.O., Michael Mathier, M.D., F.A.C.C., Terence Trow, M.D.
 
To learn more about the symposium, visit the symposium's webpage or call 203-785-4578.

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NORD

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.