PHA News Archive - July 6, 2007

Vol 8, Number 14		July 6, 2007
PHANews is an e-mail newsletter from the Pulmonary Hypertension Association covering PH related topics.

PHANews Editor - Sally Maddox skmaddox@bellsouth.net
Contributing Editors - PHA staff
reaching over 6500 subscribers
www.PHAssociation.org

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.

		Topics For This Issue
	HEADLINES --TAKE ACTION: Help Eliminate the Medicare Waiting Period --Register Today for a FREE 2007 Medical Education Session Near You! --Upcoming Events --Highlight from PH Community: Online Community PH Patient from Kansas Visits PHA NEWS --New Approach to Pulmonary Hypertension Shows Promise --Encysive Ends Key Trial of PH Drug Thelin --A Mother's Race for a Cure: One entrepreneur plunged into biotech to save her daughter's life. ANNOUNCEMENTS --Persistent Voices Accepting Submissions --PHA Launches Family Circle of Friends campaign

349 Days to 2008 PHA Conference! Keep checking for updates

TAKE ACTION

Help Eliminate the Medicare Waiting Period Individuals receiving Social Security Disability Insurance (SSDI) must wait two years before they are eligible for Medicare coverage. Pulmonary hypertension (PH) patients cannot afford this waiting period, either financially or medically. The Ending the Medicare Disability Waiting Period Act of 2007 (H.R. 154) is critical to ensuring that PH patients on disability have continuous access to treatment. H.R. 154 would cut down the waiting period, in intervals, until there was not a waiting period. At the same time it would allow patients with life-threatening illness, like PH, to skip the waiting period. Take action today! Ask your representative to co-sponsor the Medicare Disability Waiting Period Act. Take action

 

REGISTER TODAY

for a FREE 2007 Medical Education Session Near You! Pulmonary Arterial Hypertension: Current Approaches and Future Expectations for Clinicians and Patients Date and Locations: September 8, 2007 in Baltimore, Md. and New York, N.Y. September 15, 2007 in Minneapolis, Minn. and Los Angeles, Calif. October 6, 2007 in Dallas, Texas and Miami, Fla. The 2007 Medical Education Sessions feature a CME course for healthcare providers, educational sessions for patients and a joint luncheon that will bring attendees together for networking opportunities. This FREE program is designed to provide healthcare providers and patients with the most current information about the PAH disease process, a comprehensive understanding of available treatment options and the importance of effective disease management. The 2007 Medical Education Sessions are sponsored by the Pulmonary Hypertension Association and the University of Michigan Medical School, in partnership with the Scleroderma Foundation. The 6 city tour is supported by an unrestricted educational grant from Actelion Pharmaceuticals. More info and pre-register for this program

 

Upcoming Events

July 14, 2007, 2pm, Ohio Intimacy Issues and PH: Yes, SEX is a three letter word. Kathy Hague, R.N. - B.S.N and Doug Mayfield, R.N., will present a brief PowerPoint presentation about intimacy issues with having and living with PH followed by separate discussion sessions for “he’s and she’s.” The groups will then rejoin for further dialogue. Group discussion will be kept confidential but may be used in a general way (no names will be used but the question or concern may be brought back to the group for further discussion). RSVP to: Merle Reeseman by July 10 at 724 458-5573 (Penn.) or OHPA.PHER@gmail.com. More info August 18, 2007, Minn. Minnesota Support Group Picnic and Fun Walk Hurry!! Participants registering after July 16 may not get a T-Shirt!! Battle Creek Park Pavilion 2401 Upper Afton Rd E Maplewood, MN 55119 Register online by choosing "Get Started" here Contact info: Cindy Wangerud 763-350-7665, cindyw@usfamily.net or Tracy Zanitsch 763-595-9138, clover1613@comcast.net

 

Highlight from PH Community:
	Online Community PH Patient from Kansas Visits PHA Jean Robart, a PH patient from Kansas who is a member of the PHAcommunity listserv, visited PHA's Silver Spring offices in May while she was on vacation in the Washington, D.C. area. Read story

NEWS

New Approach to Pulmonary Hypertension Shows Promise Researchers at the University of Alberta have identified a "central command system" for pulmonary hypertension. "We believe this finding opens the door to a new strategy and the development of a new stream of drugs to treat this complex and lethal disease," said Dr. Evangelos Michelakis, director of the U of A pulmonary hypertension program and senior author of the study, which appears in the Proceedings of the National Academy of Sciences. Read article Encysive Ends Key Trial of PH Drug Thelin Encysive will discontinue its ongoing U.S. study of Thelin for PAH. Instead, the company plans to focus on the sales and marketing of Thelin in Europe, Canada and Australia, where the drug has been approved. Read article A Mother's Race for a Cure: One entrepreneur plunged into biotech to save her daughter's life. The PH journey of United Therapeutics President Martine Rothblatt, who launched the company to find a cure for her daughter. Read article

 

ANNOUNCEMENTS

Persistent Voices Accepting Submissions PHA accepts submissions year-round for publication in Persistent Voices. The deadline for our next issue is August 8. Send us your personal PH story, pictures or poems for consideration. Your story can mean so much to another PH patient; please consider sharing! Please keep in mind that due to space limitations, your piece may be edited for length or clarity. Work submitted will be printed as space permits. E-mail your story or poem as a word attachment to print@PHAssociation.org, fax to 301-565-3994 Attn: Christine, or mail a hard copy to the address below. High resolution photographs or artwork can be e-mailed as well. Please include your name on all pieces submitted. PHA cannot be held responsible for materials lost. Persistent Voices Pulmonary Hypertension Association 801 Roeder Road, Ste. 400 Silver Spring, MD 20910 Contact Christine with questions or concerns -- or to share your story over the phone -- at 301-565-3004 x114 or e-mail print@PHAssociation.org. PHA Launches Family Circle of Friends Campaign This year PHA has added a new twist to Circle of Friends, PHA's letter writing campaign that helps raise awareness of PH and funds for PHA. We are encouraging families affected by PH to work collectively to help us reach our goal of raising $100,000 by participating in our Family Circle of Friends campaign. Each member of your family may have a different story, but you all have the same goal -- to bring an end to the suffering caused by PH. We think you will find it gratifying on many levels: working together, your family will experience the empowerment of working toward a shared goal; you will receive significant support and encouragement from your friends and family; and you will help support the many PHA programs that patients, family members and medical professionals have come to rely on. The concept is very simple and PHA is available to help along the way. For more information and a kit to get you started, contact Sarah at Sarah@PHAssociation.org or 301-565-3004 x127.

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