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.
NEWS
--Gilead Announces Presentation of Long-Term Data for Ambrisentan, a Potential Treatment for Patients With Pulmonary Arterial Hypertension
--UPMC Performs First Beating Heart Transplant
--Pulmonary Hypertension Association Names Recipients of 2007 Award of Excellence in Pulmonary Arterial Hypertension (PAH) Care
ANNOUNCEMENTS
--California PH Forum Early Registration Deadline is Next Thursday, May 31
--PHA Awareness Fliers Available Online
--Sustainers Circle Keeping Hope Alive -- Join PHA's Monthly Giving Program
TAKE ACTION
Join June Conference Call on New PH Bill
This summer, a new PH bill will be introduced in Congress...your help is needed to pass it! During August, visit your Members of Congress in local offices near you. Visiting with elected officials face-to-face is the most effective way to get their support. To learn more, join one of the calls below.
Wednesday, June 6 at 7 p.m. (EST) Or Monday, June 11 at 3 p.m. (EST)
Call 1-877--511-1607, use PIN 3564893
The call will be led by lobbyist Gavin Lindberg and PH patients with advocacy experience.
Piedmont, N.C. Support Group Support Group Work Leads to the Training of 18 Primary Care Doctors!
Support Group Leader Cindy Pickles emailed us enthusiastically about the impact of her group in medical education of local primary care physicians. Our Support Groups educate, inspire and provide hope. In addition, they are capable of making a difference in the larger PH community. This group’s medical education will no doubt help patients receive early diagnosis and reduce misdiagnosis. Read her email to see what we mean! Read Cindy's report
North Texas Support Group Annual Picnic Rains In!
Support Group Leader Sheila Williams says: "Rain, Rain, Rain and more Rain...did not stop our PH Family from adventuring out for our annual picnic. We had a marvelous turn out of about 55 to 60 patients and their family members. We had a bouncie house, a gentleman that could make any animal you wanted out of balloons. The kids loved him and so did the grown-ups! This year's picnic was the best turn out since we started four years ago. Read more
2007 PAH Medical Education Sessions
Registration Open
Our 6 city tour in the fall is now open for registration. The 2007 Medical Education Sessions, Pulmonary Arterial Hypertension: Current Approaches and Future Expectations for Clinicians and Patients, will take place in the cities of Baltimore, Md., Dallas, Texas, Los Angeles, Calif., Miami, Fla., Minneapolis, Minn. and New York, N.Y.
These bright note cards designed by people in the PH community are packaged with 12 cards and 12 envelopes. There are four different designs contained in each package. Three cards of each. Each card is blank on the inside and on the back includes a message about the designer of the art on the front as well as a brief description of PH and PHA. One design is The Healing Quilt Thank You cards, which you can also buy separately.
Helpful Hints from the PH Resource Network Education Committee
Tips on Medic Alert IDs
Creating Effective Medic Alert Identifiers for PH Patients is the latest installment of Helpful Hints from the PH Resource Network Education Committee.
Deadline for Message Board Cleanup is Monday, May 29
Yes, we know we said the deadline was May 28, but we forgot Monday is a holiday. Our mistake is your fortune as you have an extra day to save any of your old messages from before 2006.
Gilead Announces Presentation of Long-Term Data for Ambrisentan, a Potential Treatment for Patients With Pulmonary Arterial Hypertension
Gilead Sciences, Inc. announced results of two long-term studies evaluating ambrisentan, an investigational endothelin receptor antagonist (ERA) for the treatment of patients with pulmonary arterial hypertension (PAH). These long-term data are from patients who originally participated in the two pivotal Phase III ARIES studies and AMB-222, a Phase II study of patients who had previously discontinued other ERAs because of liver function abnormalities. These studies were selected for oral presentation at ATS 2007, the International Conference of the American Thoracic Society, taking place in San Francisco, California, May 18-23. Read article
UPMC Performs First Beating Heart Transplant
The University of Pittsburgh Medical Center has performed the nation's first beating heart transplant. The patient, Richard Jackson, 47, is now home in Portage and doing well after receiving a new heart from a 46-year-old man. Read article
Pulmonary Hypertension Association Names Recipients of 2007 Award of Excellence in Pulmonary Arterial Hypertension (PAH) Care
Drs. Newman and Loyd were selected for their outstanding contributions to PAH patient care and clinical research, being among the discoverers of the bone morphogenetic protein receptor type II (BMPR-2) mutation, now linked to the genetic disorder idiopathic pulmonary arterial hypertension (IPAH), and the founders of one of the leading PAH programs in the world. Read article
ANNOUNCEMENTS
California PH Forum Early Registration Deadline May 31 California PH Forum
June 22-24, 2007
Hotel Sofitel
San Francisco Bay, Calif. Co-sponsored by PHA
The early registration date of May 31 is fast approaching. Discounted hotel room rates cannot be guaranteed past that date. The Forum registration fee also increases on June 1, and no registrations will be accepted after June 15. The registration fee includes two dinners, one lunch and snack breaks. The forum will have several world renowned doctors presenting workshops. View complete program information and register
PHA Awareness Fliers Available Online
PHA has a plethora of programs, materials, groups and information to help you stay informed about PH and raise awareness about the illness in your community. Check out our PHA awareness fliers, which highlight just some of these resources, to find new ways to get involved in the fight against PH. Or print them out and distribute them at your next support group meeting or special event to spread the word about PHA to friends and family. View or print fliers
Sustainers Circle Keeping Hope Alive -- Join PHA's Monthly Giving Program PHA maintains a host of programs that benefit patients, their family members and the medical professionals who treat them. We fight day in and day out in our search for a cure because pulmonary hypertension never takes a break -- so we don't either. We invite you to support our shared cause by becoming a member of PHA's Sustainers Circle, PHA's monthly giving program. By giving PHA permission to collect a monthly payment from your credit card in the amount you set, you help us keep hope alive.
Lisa Wheeler, M.T., says...
"I give through the Sustainers Circle because it is the easiest way for me to support an organization that provides so much for so many with Pulmonary Hypertension. I feel that my money will be used wisely to assist patients, families, and fund research. PHA is unique in its dedication to patients, their families and caregivers, and helping researchers and physicians to care for patients and search for a cure. We need PHA to succeed in its mission and if my monthly commitment via the Sustainers Circle helps, then in my own small way I have done the right thing."
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
Join June Conference Call on New PH Bill
