PHANews is meant to give a picture of recent events and activities affecting the life
of the PH community. This compilation should not be viewed as endorsement of the
information provided or its accuracy.
Central Florida Support Group Hears from A.C.C.E.S.S. and Caring Voice Coalition
Mrs. Penni Perez-Potter from A.C.C.E.S.S. spoke on the subject of disability and insurance and how A.C.C.E.S.S. can assist patients with application, appeal and approval of disability and insurance entitlements. Following Penni's presentation, Ms. Pamela Stockwell from the Caring Voice Coalition was introduced to the group and spoke briefly on the mission of her organization, which as programs to help patients with insurance reimbursement, financial assistance, patient support services and public advocacy. Pam is scheduled to be the featured speaker at the December support group meeting. Read story
Support Group News
PHA's Support Group Leadership Institute Receives First Installment for $1 Million Endowment from United Therapeutics
United Therapeutics presented PHA with the first installment on a $1,000,000 endowment gift to establish PHA's new Support Group Leadership Training Institute. The Institute will be supported by interest from the grant by United Therapeutics. In presenting the donation, United Therapeutics CEO, Martine Rothblatt, said, "PHA saved my daughter's life ... Over ten years ago PHA provided my family with our first referrals to PAH specialists and our first exposure to PAH community information. It was from this information that we learned of the unused molecule that ultimately became Remodulin. Because of that experience, it is very appropriate that United Therapeutics supports the continuing growth of PHA's support group network." Read story
Highlights from the PH Community:
Groups & Individuals Alike Raise Awareness and Funds for the Cause!
PHA would like to congratulate our event organizers on a job well done. You are all doing such a great job raising awareness and funds for PH. We'd like to draw your attention to the great work you're doing...
In Honor of Our Lives Adds to the Celebration of Dee and Charles Curtis' 50th Wedding Anniversary Through PHA's In Honor of Our Lives program, Dee and Charles Curtis decided to make their 50th wedding anniversary party even more meaningful by requesting in their invitations that guests make a donation to PHA in lieu of gifts. They were spurred to do this by their daughter Carol's battle with PH. When asked about the outcome of their fundraiser, Dee said, "I was surprised by the amount of generosity we received from our friends and family. This was much more special than a bunch of presents that I don't need or want. At my age, I don't really need anything." The Curtis' In Honor of Our Lives fundraiser raised nearly $1400 to support our cause.
For more information about how you can commemorate your personal milestone in this way with the help of PHA's In Honor of Our Lives program, please see PHA's website or contact Andrew at 301-565-3004 x116 or giving@PHAssociation.org.
PHA Board Chair and Many More Individuals Help First Giving Hit $10,000 Mark
PHA's First Giving website hit the $10,000 fundraising mark recently with PHA's Board Chair Dr. Mike McGoon and his wife leading the pack. As PHA's Chair of the Board and consultant in the Division of Cardiovascular Diseases at the Mayo Clinic in Rochester, Minn. and Professor of Medicine at the Mayo Clinic College of Medicine, Dr. Michael McGoon is a very busy man to say the least. However, with PHA's First Giving website, he quickly and easily registered to participate in the Minnesota Fun Walk for a Cure in August. He and his wife, Bonnie, created a fundraising page to collect pledges and became PHA's top online fundraiser within a week. Another fun walk participant, PH patient Robin Hoff, raised $1000 in only 2 days!
Doctors to Hike for a Cure
While Dr. McGoon is walking for his patients in Minnesota, Dr. Raymond Benza will be taking on a mountain in the Grand Tetons in a fundraising hike for the PH community! Dr. Benza is the Director of Pulmonary Vascular Disease at the University of Alabama at Birmingham and will form a team of his medical colleagues in this effort. We'll keep you posted on Dr. Benza's adventures taking place in late August.
Patients and supporters are participating in Fun Walks and other events across the country including the following upcoming events:
Aug 18, 2007 -- Inner-City Cleveland Support Group Pasta Dinner
Aug 18, 2007 -- Minnesota PHA PHun Walk for a Cure
Aug 18, 2007 -- Nathan's Run Walk N Roll (Ky.)
Sep 14, 2007 -- Maine Swinging for a Cure Golf Tournament
Oct 6, 2007 -- New York Fun Walk for PH
Oct 27, 2007 -- 4th Annual Georgia PHA Fun Walk for a Cure
Encysive to Request Thelin Dispute Hearing The clash between U.S. firm Encysive Pharmaceuticals and the Food and Drug Administration on Thelin's efficacy is headed for formal dispute resolution. The company said it anticipates filing a request with the agency for formal dispute resolution "in the near term" on the issue of whether Encysive submitted sufficient data with the FDA to prove its potential drug Thelin is effective for treating pulmonary arterial hypertension. Read article
Cure PH Golf Tournament Exceeds Goal
The 9th Annual Cure PH Golf Tournament recently raised more than $120,000 to help find a cure for pulmonary hypertension (PH). The event helps raise money each year for PH research. One hundred percent of the event proceeds are distributed to help fund national research of the disease to discover better treatments and find a cure. Read article
New Approach to Pulmonary Hypertension Shows Promise
Researchers at the University of Alberta have identified a "central command system" for pulmonary hypertension, a disease that currently has no cure and kills thousands each year."We believe this finding opens the door to a new strategy and the development of a new stream of drugs to treat this complex and lethal disease," said Dr. Evangelos Michelakis, director of the U of A pulmonary hypertension program and senior author of the study, which appears today in the Proceedings of the National Academy of Sciences. Read article
ANNOUNCEMENTS
PH Pediatric Community Announcement: Child PH Patient Documentary Casting Call
Long-time PH patient and filmmaker, Kirsten Larson, is organizing a documentary about growing up with PH. If you and your families are interested in participating, please use the contact information in the linked flier. (Note – this is not a PHA initiative, PHA has merely agreed to post this information to the PH community).
Casting Call: Do you want to share your story? Periwinkle Films is casting for the documentary feature "I Used to Swim a Lot."
The film will focus on the lives of seven young PH patients as they attempt to blend in with their peers even though they are truly one in a million.
Periwinkle Films is currently searching for children and families from all walks of life plagued with PH to participate in the project. Periwinkle Films would need to document approximately two weeks of your home life, following your child during a pinnacle point in their life, i.e. Birthday/Pool parties, Sweet 16, Medical Transitions, Prom/dating, etc. Generally Periwinkle Films is looking for children and young adults ranging from ages 2 to 26 but they are open and willing to accept applications of all ages. View application details (PDF)
PH Medical Professional Community Announcements:
A Free Online CME Opportunity for Medical Professionals
Physicians are invited to participate in a case-based e-learning program derived from a series of regional meetings originally conducted in November and December of 2006, targeted to cardiology and pulmonology Fellows. Through the Web the information is slated to reach the broader audience of clinicians involved in the treatment of PAH; another series of regional meetings is scheduled for the fall of this year. Course faculty are Curt J. Daniels, M.D. - Chairman; Fernando Torres, M.D.; Terence Trow, M.D. and Murali Chakinala, M.D.
Part 1 of 4 in a Case-Based Series:
You Make the Call — Pulmonary Arterial Hypertension Strategies for Clinical Practice: Eisenmenger's Syndrome Supported by Actelion
Upcoming Educational Events for Medical Professionals
Through the new Building Medical Education in PH program, the Pulmonary Hypertension Association is partnering with PH Centers to promote CME educational events geared toward physicians and allied healthcare providers.
Upcoming events include:
September 14 & 15, 2007 – St. Louis, Mo. 2007 Pulmonary Vascular Symposium
This program is designed to update clinicians and researchers on diseases involving the pulmonary vasculature, including pulmonary hypertension, veno-thrombo-embolism and others. The agenda will include didactic lectures, interactive panel and case-based discussion. A patient education session on Friday, September 14, will feature plenary sessions and small-group discussions focused on various topics relevant to pulmonary hypertension. Sponsored by the Washington University School of Medicine in St. Louis and the Kansas University Medical Center. For more information about this event please call Susan O'Connor, Activity Coordinator, at 1-800-325-9862.
September 28 & 29, 2007 – Pittsburgh, Penn. 2007 Innovation in Heart Failure and Pulmonary Hypertension
This CME course is intended for cardiologists, cardiothoracic surgeons, internists, pulmonologists and other health care professionals who have direct responsibility for, or interest in, advanced cardiovascular patient care. Sponsored by Allegheny General Hospital. For more information please contact the Allegheny General Hospital CME Office at 412-359-4952.
If you would like to partner with PHA in promoting your next CME event, please contact Jessica Hardy, Meetings Planner, at 301-565-3004 x128 or meetings@PHAssociation.org.
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.
HEADLINES
Doctors to Hike for a Cure
