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| Upcoming Events |
PHA Congressional Luncheon Coming on November 15th!
Please save the date. We will keep you posted as more information becomes available.
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.
PHA 2007 Medical Education Sessions
October 6, 2007
Miami, Fla. and Dallas, Texas (includes North Texas PHA Support Group Hospitality Room)
3rd Annual NY Fun Walk
October 6, 2007
East Meadow, N.Y. | |
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| Vol 8 /Number 19 |
September 26, 2007 |
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Dear Readers,
While you may not know who Diane Greenhalgh is, behind-the-scenes she's a very important staff person at PHA, responsible for bringing you PHANews twice a month along with Editor Sally Maddox. She's also our Webmaster and staff IT person. We wanted to let you know that Diane had an accident in Hawaii last week and will be convalescing for at least a month. We plan to bring you this newsletter on a bi-weekly basis as you expect it and to keep our Website as fresh as possible during Diane's absence. Please join all of us on the staff and Board of PHA in sending healing thoughts to Diane.
All the best,
Adrienne Dern
PHA Vice President
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REGISTER NOW FOR THE 2007 PH RESOURCE NETWORK SYMPOSIUM! |
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New travel scholarship awards available!
PHenomenal Progress in PH: Bringing Advances into Practice will be held October 11-13, 2007, at the Hyatt Regency Crystal City in Arlington, Va. (minutes from Washington, D.C.).
If you are a PH-treating allied health professional and have not yet registered for the upcoming Symposium, this is your last chance to register in advance. Online registration will close on Monday, October 1. Due to high interest in the event, the free registration scholarships offered by Actelion Pharmaceuticals, Inc. have been expended.
The good news is that the Eli Lilly and Company Symposium Travel Fund will provide up to $225 for travel reimbursement to any Symposium participant who has not yet received a free registration and is currently PH-treating (non-corporate). Support is also now available from United Therapeutics Corporation's general travel fund (same conditions apply).
For more information, please visit www.PHAssociation.org/phrn/symposium/ or to view the complete agenda, go to www.PHAssociation.org/PHRN/symposium/agenda.pdf. You may also contact Michelle Gill at 301-565-3004 x121 or PHRN@PHAssociation.org to learn more. |
| WEBSITE SURVEY RESULTS ARE IN |
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Community Tells Us What Works / What Doesn't
The results are in.
PHA recently conducted a website survey and heard from almost 500 members of the PH community about what they like about www.PHAssociation.org and what they don't.
There were many positive comments including, "I find it an incredibly helpful site and have told others about it. I love the updated e-mails from PHA; that is very helpful to me in my daily life."
There were also many helpful suggestions including, "The front page looks too busy. Sometimes hard to focus in on the info that you really need. Try to simplify the home page."
Of the PH community members who responded, 77% said that the lastest PH news was extremely important to them. PHA is currently working on a redesign of the website that will incorporate the feedback received from PH community members. Thank you for taking the time to respond to the PHA Website Survey. Your input is greatly appreciated! |
| PH MEDICAL INFORMATION IN THE NEWS |
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| New data backs wider use of flagship Actelion drug
Reuters
By Ben Hirschler
September 3, 2007
Actelion's (ATLN.S: Quote, Profile, Research) top-selling drug Tracleer can help less sick patients with pulmonary arterial hypertension (PAH), as well as those with advanced disease, researchers said on Sunday.
Nazzareno Galie, a cardiologist at the University of Bologna in Italy, said the drug, known generically as bosentan, helped stabilise the condition of patients with Class II PAH and also improved blood flow.
Tracleer is currently only approved for treating patients with Class III or IV PAH, a rare but life-threatening form of hypertension.
In a study involving 185 patients treated for six months, only 3 percent of patients on Tracleer saw their condition worsen significantly against 14 percent on placebo -- a 77 percent relative risk reduction.
The treated group also had a 23 percent improvement in pulmonary vascular resistance, which measures the resistance to blood flow in the lungs.
Please click on the link below to read the full article.
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| LAST MED-EDS COMING UP - DON'T MISS OUT! |
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Dallas and Miami are venues for October 6 sessions
Medical professionals and patients across the country have already benefited from four of our medical education sessions which took place in September. If you live in the Dallas or Miami areas, now it's your turn to take advantage of these FREE programs that address the theme "Pulmonary Arterial Hypertension - Current Approaches and Future Expectations for Clinicians and Patients." CMEs are offered for healthcare providers. Patients get to hear from medical experts in the field of PH, ask questions and network with other patients. For more information and to register, go to http://www.pahsymposium.com/. |
| NEW PH ACT GAINS MOMENTUM |
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The PH Research and Education Act of 2007 has new co-sponsors!
Congressmen Phil English of PA and Steve LaTourette of OH have both signed on as co-sponsors of our new PH Research and Education Act. What do these two gentlemen have in common? They BOTH received visits from members of the PH community over the past six weeks.
Your district visits are paying off!
This year's district visit season took on a life of its own - so many of you have gone the extra mile in reaching out to your Members of Congress and their staff, in some cases multiple times, in order to get a visit with their offices. Listed below are the Members of Congress whose staff have received face-to-face visits from members of the PH community since the introduction of the PH Research and Education Act of 2007.
ü Rep. Calvert and Sen. Boxer, California
ü Rep. Chris Shays and Sen. Joe Lieberman, Connecticut
ü Sen. Hillary Clinton, New York
ü Rep. Tim Ryan and Rep. Steve LaTourette, Ohio
ü Rep. Phil English, Rep. Charlie Dent, Sen. Arlen Specter, and Sen. Robert Casey, Pennsylvania.
ü Sen. Lindsey Graham, South Carolina
ü Rep. Mike Conaway, Texas
ü Rep. Adam Smith and Sen. Patty Murray, Washington
The overarching message that PHA heard from those who participated in this year's district visit campaign was how easy these visits are. Michelle in Calif. said, "The meeting went great! We ended up meeting with Congressman Calvert's Aide as the Congressman was still on vacation...he was very attentive and asked several questions." Joan of Penn. said, "On Wednesday four members of our support group met with Ari Mittleman, Senator Casey's Field Representative. The meeting went well; Ari almost promised Sen. Casey's co-sponsorship, once the bill is introduced there."
Don't forget, if you are still interested in making a face-to-face visit with your Members of Congress, don't hesitate to contact them. Members are often in their local offices on Fridays Mondays and their staff are available all year around. |
| MEDICAL PROFESSIONALS: GET ON THE TREADMILL AT CHEST |
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PH community members - please share this information with your doctor.
This year at the CHEST convention in Chicago, Ill., on October 20-25, Gilead will be hosting the "Walk for PAH" event to help raise money for programs and services supported by PHA. For each step you take on one of their treadmills, Gilead will donate $0.20 to PHA. Please visit booth 929!
Just imagine, for every participant who walks for as little as 3 minutes, at a pace of 100 steps per minute, $60 will be raised for PHA. And as an added bonus, Gilead has just called us to say that they will double the per-step contribution to $0.40 for each participant who preregisters at www.mynextstep.com (coming soon). That's $120 for PHA for a brisk 3-minute walk! The contributions will add up fast! Now, imagine that you and 500 of your colleagues participate-that could be more than $60,000 raised for PHA! Please visit booth 929 to help PHA take advantage of this opportunity. Make your steps count for PHA!
Thank you for your support. |
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SUPPORT PHA IN YOUR WORKPLACE! |
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INTRODUCING OUR WORKPLACE HAS A HEART. 
Did you know that last year, one company held a Blue Jeans for PH event and raised over $23,000? Did you know that raising funds and awareness for PH during awareness month could be as simple as baking chocolate chip cookies? PHA now has the tools to help you hold a successful workplace event of your very own!
Want to know how? Contact Sarah@PHAssociation.org for our brand new kit, Our Workplace Has a Heart.
Support PHA in the CFC! If you or someone in your family is an employee of the federal government (including the military and the postal service), you have a special opportunity to support our cause by designating PHA (CFC#12097) as the beneficiary of your Combined Federal Campaign (CFC) pledge. Please visit www.PHAssociation.org/headlines/cfc.asp for more information on how to give and spread the word in your workplace.
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