PHA News Archive - March 30, 2007

Vol 8, Number 7		March 30, 2007
PHA News is an e-mail newsletter from the Pulmonary Hypertension Association covering PH related topics.

PHA News Editor - Sally Maddox skmaddox@bellsouth.net
Contributing Editors - PHA staff
reaching over 6200 subscribers
www.PHAssociation.org

PHA News 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.

		Topics For This Issue
	HEADLINES --New PHAware Web Section Makes Raising Awareness Even Easier with Tips & Resources --PH Fundraising: It's Electric! PHA Launches Online Fundraising Tool --Highlight from the PH Community: PHenomenal Hope for a Cure Brunch Unearths Goodwill in Omaha --PHA Research Grant Award Winner Publishes Article Based on His PHA-Funded Research! NEWS --ImageRight Sponsors Reception to Benefit Charity --Who's Who at ATS: Judy Simpson: Fighting for a Cure --Gilead Drug Clears European Marketing Hurdle --European Commission grants Orphan Drug Status to Elafin for the treatment of PAH --Stony Brook Researchers' Discovery Of "Anti-Pulmonary Hypertension" Gene In Mice May Impact Treatment ANNOUNCEMENTS --Winter 2006 Advances in PH Medical Journal Available Online --Sustainers Circle Keeping Hope Alive -- Join PHA's Monthly Giving Program --PHA Online Research on Pediatric PH Family Set to Launch Soon – It's Not Too Late to Participate --PH Fashion for Spring: Raise Awareness Everywhere You Go!

New PHAware Web Section

Makes Raising Awareness Even Easier with Tips & Resources Why raise awareness about PH? People cannot create change if they don’t know there is a problem. If the PH community doesn't tell others about PH, no one will. Together we can raise awareness about PH and involve our communities in finding a cure. Do your part to start raising awareness about PH today by participating in PHAware! It's easy to do with step-by-step guidelines, tips and samples. PHA will even send you materials and press kits to support your efforts. You can also join the new PHAware Listserv, which provides you with way to connect with others who are increasing awareness. When you join you will get emails from PHA and its members about talking to the media about PH. Get started sharing your story through the media today!

PH Fundraising: It's Electric!

PHA Launches Online Fundraising Tool Have you ever received an e-mail from a friend or co-worker asking you to support his or her walk for breast cancer or AIDS research? Ever wanted to do something like that for yourself, your loved one or the PH community as a whole? Now you can! PHA has just introduced a new online resource through FirstGiving to help you fundraise for the cause. Whether to host an event, celebrate a life, honor a loved one or offer a memorial to a PH patient, you can use the web to raise awareness and funds while sharing your story. "This is HUGE," exclaimed Support Group Leader Joanne Sperando-Schmidt. "These personalized pages will make it so much easier to raise more for PH." It's as easy as filling in the blanks and forwarding your unique link to family and friends. Learn more and create your own fundraising page

Highlight from the PH Community:

PHenomenal Hope for a Cure Brunch Unearths Goodwill in Omaha The Nebraska PHenomenal Hope for a Cure Brunch raised over $25,000 for research and services from its 150 piece auction. The group is already planning next year's event. Read event coordinator Annette Markin's moving story about how the "Periwinkles" (as event organizers were called) came together for friendship, fun and fundraising. Read Annette's story Organizing a Fun Walk or other special event? PHA is proud to introduce the new and improved Fun Walk Kit! Offering fresh ideas and suggestions, the kit leads you step-by-step through the planning and implementation process. It includes a to do list, sample budget, sample press materials, the new First Giving program (see above) and much more. Although the kit is geared towards Fun Walks, the information can be used towards any event! Interested in organizing a Fun Walk or other event for PHA? Contact PHA's special event coordinator at event@PHAssociation.org or 301-565-3004 x125 to receive a Fun Walk kit and more information.

PHA Research Grant Award Winner Publishes Article

Based on His PHA-Funded Research! Each year, through three research grant programs, PHA funds five new researchers (for a total of 13 research grants per year) who focus their research on pulmonary hypertension. Recently, Dr. Georg Hansmann, M.D., published a paper based on his research titled "PAH is Linked to Insulin Resistance And Reversed By PPARy Activation." Dr. Hansmann commented that he "feels very lucky and honored to be supported by the Pulmonary Hypertension Association." Through this program, PHA and its partners have committed over $6 million to PH research. PHA's research grant program is only possible due to contributions from the PH community, including funds raised at special events. PHA thanks those who help to make our research grant program possible. Read Dr. Hansmann's Report (PDF) Read more about Dr. Hansmann and other research grant award winners

 

NEWS

ImageRight Sponsors Reception to Benefit Charity During the recent AAMGA Automation Show held at the InterContinental Hotel in Buckhead, GA, ImageRight sponsored a reception from which all proceeds were donated to the Pulmonary Hypertension Association (PHA). Read article Who's Who at ATS: Judy Simpson: Fighting for a Cure (scroll to page 4) It wasn't until her younger sister, Pat Paton, was diagnosed with pulmonary arterial hyptertension (PAH) at the Mayo Clinic in 1987 that she became a champion of patient advocacy. Read article Gilead Drug Clears European Marketing Hurdle Ambrisentan is designed for the treatment of pulmonary arterial hypertension. The FDA earlier granted a priority review of Gilead's new drug application. Read article European Commission Grants Orphan Drug Status to Elafin for the Treatment of PAH After recommendation by the European Medicines Agency (EMEA), Proteo Biotech AG has received orphan drug status from the European Commission for its drug candidate Elafin for the treatment of pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension. Read article Stony Brook Researchers' Discovery Of "Anti-Pulmonary Hypertension" Gene In Mice May Impact Treatment A team of Stony Brook University Medical Center researchers has identified the Vasoactive Intestinal Peptide (VIP) gene as an "anti-pulmonary hypertension" gene. This finding helps clarify what mechanisms lead to the disease known as idiopathic pulmonary arterial hypertension (PAH) and could have major implications for treatment. Read article

ANNOUNCEMENTS

Winter 2006 Advances in PH Medical Journal Available Online In our Pathlight online survey a lot of responders asked for more of Advances articles. Well, you can read it in its entirety online. The Winter 2006 issue went up this week and the Spring 2007 issue is coming soon in late April. You can read as far back as 2002 and our new index makes it easy to search the section by issue. Read the journal Sustainers Circle Keeping Hope Alive -- Join PHA's Monthly Giving Program Pulmonary hypertension never takes a break. That's why PHA fights day in and day out in our search for a cure and why we maintain a host of programs that benefit patients, their family members and the medical professionals who treat them. 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. Join PHA’s Sustainers Circle PHA Online Research on Pediatric PH Family Set to Launch Soon – It's Not Too Late to Participate A new initiative of the Pulmonary Hypertension Association and a group of parent volunteers has been designed to understand how PHA can better meet the needs of pediatric patients and their families. The first phase is research which will be conducted for two weeks on online bulletin boards. These boards will be open from April 30–May 13 and participants can log on and respond as often as they wish during this two week period. If you are the parent of a child with PH under the age of 18 and are interested in participating in this research, please contact Sarah at 301-565-3004 x127 or Sarah@PHAssociation.org. PH Fashion for Spring: Raise Awareness Everywhere You Go! Spring has arrived! It's finally t-shirt weather again! Sport your official PHA t-shirt and raise PH awareness everywhere you go! Buy your PHA t-shirt

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