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| Upcoming Events |
1st Annual Herc Open
August 11, 2007
Sugarbush, Vt.
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.
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.
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 16 |
August 6, 2007 |
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| LIKE OUR NEW LOOK? |
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What to you think about the new look of PHANews? What do you like? What can we improve?
Not getting the HTML version? The HTML version of PHA News is easier to read and has great pictures of your fellow PHers. Change your settings to HTML e-mails by choosing "Update Profile/Email Settings" at the end of this e-mail. Or you can view past issues in HTML on PHA's website. |
| IT'S AUGUST -- TIME FOR DISTRICT VISITS |
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 Charlotte McCabe Organizes Congressional District Visits with Her Support Group
After giving a very successful presentation on advocacy to her support group (Puyallup, Wash.), Charlotte McCabe scheduled a district visit for her group to meet with Representative Adam Smith's Health Legislative Assistant over the August recess. Charlotte (pictured right with her dog Buddy) is working on scheduling visits with the local area's other legislators in Congress as well.
When Charlotte makes her visit she'll be carrying some exciting new pieces of information - a copy of the new PH Research and Education Act of 2007, and a fact sheet that explains the key points of the bill.
The PH Research and Education Act was recently introduced in the House as H.R. 3368. It does not yet have a number in the Senate, but Charlotte will follow up with her Senators this fall when the number becomes available and reiterate her request that they co-sponsor the bill.
The bill has 5 major components --
- Establish a PH Clinical Research Network through the National Heart Lung and Blood Institute.
- Establish a PH Training and Preceptorship Program through the NHLBI.
- Establish an education campaign on PH for health professionals through the CDC.
- Establish an education campaign on PH for the general public through the CDC.
- Require the Government Accountablity Office (the investigative arm of Congress) to conduct a study on the Medicare and Medicaid coverage standards for all FDA approved PH therapies.
To learn more about the PH Research and Education Act and visiting your Members of Congress in August, visit PHA's website or call Katie at 301-565-3004 x109. |
| AWARENESS MONTH ORGANIZING UNDERWAY |
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 From Rare to Everywhere: Ten Years of PH Awareness
November is PH Awareness Month! Together, the PH community will continue on the path to a cure, but we can't get there without you. Start planning how you will get involved now!
Order your PHAction Kit today!
Action kits include easy-to-follow instructions and tips for an array of awareness raising opportunities. Contact Katie at advocacy@PHAssociation.org or 301-565-3004 X109.
Look for the PH Awareness logo (seen above right) in PHANews for great awareness raising opportunities for November! |
 AWARENESS MONTH OPPORTUNITY:
ORGANIZING SPECIAL EVENTS |
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Awareness Month is a great time to host that house party, fun walk or other event!
Special events, whether they are house parties, galas, fun walks or mountain climbs, are a great way to mobilize your community and educate people about PH. As you can tell from the upcoming events list to the left and on the calendar as well as past special event reports, there are so many types of events to choose from that you're bound to find the right one for you.
I'm a school teacher, so I don't have much money to donate out of pocket. That's why I like doing an event that will raise funds and awareness; by organizing a Fun Walk every year, I know I'm making a difference.
-- Sally Maddox Annual GA Fun Walk coordinator
We can help you figure out what kind of event is right for you and your community, and support you through the organizing process. Special events are valuable, fun and rewarding. And while they take time and work, PHA will support your efforts from start to finish.
 We can provide you with planning materials to get you started. Later, we'll help advertise, and send you brochures and fliers about PH and PHA to hand out at your event. We'll even provide you with free hats and free t-shirts for your volunteers! PHA also offers a community of experienced special event mentors who are available to give advice, guidance and support.
For more information on planning a special event, contact PHA Special Event Coordinator Deirdre Farrell at Deirdre@PHAssociation.org or 301-565-3004 x125.
Check out the latest reports from special events:
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| BIENNIAL CALIFORNIA PH FORUM |
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 California PH Forum Features Education, Research and PH Community Interaction
by Jeannine Hart, Forum Committee Member
An enthusiastic group of 225 patients, family, caregivers, doctors, nurses and pharmaceutical industry representatives met for an educational conference on Pulmonary Arterial Hypertension. This was the first year we expanded to a three-day rather than two-day program and it was well received. Participants also enjoyed the spacious, gracious surroundings at our new location in The Hotel Sofitel San Francisco Bay. We learned together, laughed together and shared stories of our Pulmonary Hypertension experiences.
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| 2008 PH CONFERENCE PLANNING UNDERWAY |
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 Houston Support Group Gears Up For 2008 Conference
On Saturday July 21, the Houston PHA Support Group (right in May 2004) brought two speakers -- Dr. Zeenat Safdar from the Baylor Clinic in Houston discussing medical issues around PH and Debbie Castro from PHA to discuss Conference 2008. The meeting brought over 40 patients and their families who listened to Dr. Safdar discuss PH symptoms, treatments and many issues around how it affects the body.
Debbie came to the meeting specifically to talk about PHA's International Conference, which will take place in downtown Houston in June of 2008, "I spoke about the group's special role as hosts and ambassadors for our conference. They will be the core of volunteers locally and will really be the difference in making this event a huge success-and since it's in Texas, I'm sure they will do it big!"
The group was very excited after the talk and several dozen signed up to volunteer. One patient went the distance to sign up -- the morning of the meeting, the patient's line came out and while she awaited the ambulance, had her mom call to let us know not to leave her out of the volunteer pool for conference!
Conference Theme Contest Winner!
Congratulations to Ginger Kahler, a PH patient from Iowa City and winner of PHA's 8th International PH Conference theme contest! Her winning entry, A Journey of Hope and Discovery, will provide inspiration to patients, caregivers and health care professionals attending the three-day event. PHA's 8th International PH Conference will take place June 20-22, 2008 at the Hilton Americas in Houston, Texas. Look for registration and scholarship information in January 2008!
Visit conference web page for more information
Can't wait until June 2008? Attend a FREE PH Medical Education Session near you this fall!
Pulmonary Arterial Hypertension: Current Approaches and Future Expectations for Clinicians and Patients
September 8: New York, N.Y. and Baltimore, Md.
September 15: Minneapolis, Minn. and Los Angeles, Calif.
October 6: Dallas, Texas and Miami, Fla. |
| TRAVEL TIPS FACT SHEET UPDATED |
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 Travel Tips for PH Patients
Travel is possible for PH patients, and for many an important part of their professional and personal lives. The key to traveling is to PLAN AHEAD. The information in our travel tips fact sheet is meant to help you plan your trip to make it as safe and enjoyable as possible. The fact sheet includes information on air travel with oxygen.
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| SUMMER 2007 MEDICAL CONFERENCES |
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 Tis the Season for PH Awareness Raising at Medical Conferences
This summer the Pulmonary Hypertension Association has been busy raising PH awareness at important medical conferences -- in the U.S. at the American Association of Critical-Care Nurses (AACN), American Thoracic Society (ATS) and Scleroderma Foundation conferences, in China at PHA and PHA China sponsored Medical Education Sessions and a patient meeting, and in Taiwan at meetings with group representatives.
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 PH IN THE NEWS |
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ImageRight Concludes Successful User Group Conference Each year, ImageRight contributes $1,000 to the Pulmonary Hypertension Association (PHA) for each new software client signed in honor of Kerry Bardorf, a former ImageRight employee who died in 2005 from pulmonary hypertension (PH). At this year's user group conference, over $12,000 was raised by ImageRight and their clients to support PHA's efforts and research toward finding treatments or a cure for this debilitating disease. Read article
Illness That Put Boy, 12, in Spotlight Ends His Life
( Canada) Dylan Bell's courage stood out during his 10-year battle with rare, fatal lung disease. Read article
Living Lung Transplants Found Life-Saving Option in PAH
( Japan) When medical therapy flags for pulmonary artery hypertension (PAH), lung transplants from related living donors can be life-saving, researchers here said. Read article |
 PH RESOURCE NETWORK SYMPOSIUM UPDATE |
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| Only 60 Free Registrations Left & Going Fast!
There are only 60 of the free registrations for those eligible participants to the PH Resource Network Symposium in Arlington, Va., October 11-13, 2007.
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| PHA SUSTAINERS CIRCLE |
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 Keep Hope Alive - Join PHA's Monthly Giving Program
I belong to the Sustainers Circle because I believe in PHA and its work, which is invaluable.
- Rhonda Guilin
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.
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| FEEDBACK ON PATHLIGHT MAKEOVER |
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 We Want to Hear from You!
Beginning with this summer's issue, Pathlight sports a new look. If you've had a chance to read through the issue, let us know what works and what doesn't. We want to know how Pathlight can continue to be improved so that it serves you best. Let us know what we got right - is it easier to navigate? More interesting to read? Does it look nicer? Are we reporting on what you need to know? Whatever your reaction, we'd love to hear it!
Christine Dickler
Pulmonary Hypertension Association
801 Roeder Rd., Suite 400
Silver Spring, MD 20910 | |
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