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| Upcoming Events |
Inner-city Cleveland Support Group Italian Fundraiser Dinner
August 18, 2007
Cleveland, Ohio
Minnesota Support Group Picnic and Fun Walk
August 18, 2007
Maplewood, Minn.
Nathan's run, walk n'roll
August 18, 2007
Keeneland Lexington, Ky.
4th Annual PH Cure Golf Outing
August 20, 2007
Pittsburgh, Penn.
Dr. Ray Benza will be Climbing for a Cure!
August 20-26, 2007
Grand Teton National Park, Wyo.
PHA 2007 Medical Education Sessions
September 8, 2007
New York, N.Y. and Baltimore, Md.
4th Annual Shore Cure for Pulmonary Hypertension Golf Tournament
September 10, 2007
North Swainton, N.J.
Swinging for a Cure Golf Tournament
September 14, 2007
South Portland, Maine
2007 Pulmonary Vascular Symposium
September 14-15, 2007
St. Louis, Mo.
PHA 2007 Medical Education Sessions
September 15, 2007
Los Angeles, Calif. and Minneapolis, Minn.
Let's Walk and Roll for a Cure
September 15, 2007
Akron, Ohio
2007 Innovations in Heart Failure and Pulmonary Hypertension
September 28-29, 2007
Pittsburgh, Penn.
2nd Annual NC Cure PH Golf Tournament
September 29, 2007
Mocksville, N.C.
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| Vol 8 /Number 17 |
August 17, 2007 |
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NEW PH RESEARCH ACT INTRODUCED! |
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| Get Your Representative On Board Today!
Here's the news we've been waiting for...The PH Research and Education Act of 2007 (H.R. 3368) has been introduced in the House of Representatives!
 In 2005-2006, our PH bill in Congress was a success. 247 Representatives co-sponsored it. It led to the commitment of more than $24 million to innovative PH research through the creation of two new PH research centers! Now, we have another opportunity to make a difference.
The PH Research and Education Act of 2007 calls for the establishment of programs that:
- increase the effectiveness of clinical researchers in the PH field
- prepare more physicians for prompt and effective management of PH
- raise public awareness about PH symptoms
- research Medicare and Medicaid coverage of PH therapies
Our congressional champions, Rep. Tom Lantos (D-CA) and Rep. Kevin Brady (R-TX) worked hard to get the new bill introduced before the August break. In return, we've promised that hundreds of members of the PH community will contact their Representatives this month.
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| ONLINE SUPPORT GROUP CHATS NOW DAILY |
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Colleen Schnell Fills Gap for Daytime Online Support Group Chat with Tuesday Chats @1pm EST
When one of the online support group chats brought up the idea of having a daytime chat, Colleen Schnell thought it was a great idea. So did the online community when she put feelers out about interest on the message boards. Tuesday, July 24 Colleen hosted her first daytime chat at 1pm EST, which was joined by about 14 participants and lasted over 3 hours. What a welcome! You can join Colleen and other PHers on Tuesdays at 1pm EST (10am PST) on PHA's chat page.
 Mike McCarthy (Mack) Completes Chat Schedule with Thursday and Saturday Chats @ 5pm PST
Mack took the initiative to investigate chats on Thursdays and Saturdays and now we have chats every day of the week! He says the introductory Saturday chat last weekend was awesome with a few from Ariz., Calif., N.Y., Utah and Ohio. Mack says, "On these chats (PHers) can come and relate with others who have similar experiences, particularly with how they deal and relate with this chronic illness." Read article | Join Mack's Chats |
 PH RESOURCE NETWORK SYMPOSIUM UPDATE |
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Register by Monday, August 20 to Get Your Name in Program
If you register by the end of the day on Monday, August 20, you will have a chance to have your name, e-mail and institution listed in the symposium program. There are only 50 FREE registrations left and they're going fast so register today!
Lobby Day Resources Available Online
There are 130 symposium registrants signed up for the pre-symposium lobby day! This is a unique opportunity to combine forces with your peers to visit your legislators and provide them with your input on why the PH Research and Education Act is so important.
To make this easy, we've posted resources for you to take a look at online. Resources include: a draft agenda, lobby day FAQ, tips for Congressional visits, a PH Research Act fact sheet and link to bill text, PH talking points, and a slideshow on lobbying. View lobby day resources |
 AWARENESS MONTH OPPORTUNITY:
PERSONAL ONLINE FUNDRAISING PAGES |
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| Here's an Opportunity to Do Something for the Cause from the Chair You're Sitting In!
With Firstgiving you can easily set up a personal online fundraising page and raise awareness at the same time. Just tell your PH story, add a picture, and voila! Your page is ready to be emailed to your family and friends. It's that easy!
In the short that time PHA has made Firstgiving available, 41 members of our community have raised more than $20,000 and contributions continue to arrive daily. In addition to the tangible impact of these efforts, they also provide tremendous solace to the online campaigners. Here's what Merle Reeseman said about her campaign: "This is awesome, I've got tears in my eyes. I really didn't think they would give sooo much. I truly am amazed. I have great friends." ( Visit Merle's page)
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 PH IN THE NEWS |
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Teva Gets 2 Generic Drug Approvals from FDA
The FDA approved a generic version of Ellence injection and granted a tentative approval of Revatio, both made by Pfizer. Read article
Inhaled Nitric Oxide Safe For Premature Infants' Lungs
A nationwide study provides evidence that inhaled nitric oxide is safe and effective for the prevention of the most common type of long-term lung disease of very premature infants. Read article
EPIX Pharmaceuticals Announces Positive Results from Phase 2a Clinical Trial of First-in-Class 5-HT2B Antagonist in Patients with Pulmonary Hypertension Associated with Chronic Obstructive Pulmonary Disease
Highlights:
- PRX-08066 resulted in statistically significant reductions in systolic pulomnary artery pressure (SPAP); responder (≥ 4mmHg drop in SPAP) rates were 45% on 400 mg once-daily vs. 14% on placebo (p=0.043)
- Well-tolerated, with potential for co-administration with other therapies
- First-in-class 5-HT2B antagonist in PH associated with COPD
Read article |
| UPCOMING EDUCATIONAL EVENTS FOR MEDICAL PROFESSIONALS |
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| 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
September 28 & 29, 2007 - Pittsburgh, Penn.
2007 Innovations in Heart Failure and Pulmonary Hypertension
November 9, 2007 - Sarasota, Fla. Gulfcoast Pulmonary Hypertension Seminar
Contact Gail Bucci at 941-531-4532 or gailbucci@aol.com
November 30, 2007 - Boston, Mass.
5th Annual Update in Pulmonary Hypertension
December 1, 2007 - Jacksonville, Fla.
Pulmonary Hypertension: 2007 Update
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. |
| CONFERENCE INFO POSTED |
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A Journey of Hope and Discovery
The list of medically-led patient sessions, details on submitting abstracts for the Scientific Sessions and info on scholarships have been posted online to the conference 2008 web page.
Conference Schedule includes:
- Over 35 medically led sessions for patients and family members - including several in Spanish.
- Patient and family-led sessions and support group meetings
- Scientific Sessions for health care professionals
Check it out! | |
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