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| Upcoming Events |
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5th Annual Michigan Cure PH Golf Tournament
August 2, 2008
Pinckney, Mich.
Celebration of Life Party
August 9, 2008
Thornton, Colo.
Minnesota Support Group Picnic
August 9, 2008
Maplewood, Minn.
2008 Minnesota PHun Walk for a Cure
August 16, 2008
Andover, Minn.
2nd Annual Maine "Swinging for a Cure" Golf Tournament
September 13, 2008
South Portland, Maine
1st Annual Pennsylvania Cure PH Golf Tournament
September 13, 2008
Pittsburgh, Penn.
2nd Annual Walk and Roll for a Cure for Pulmonary Hypertension
September 20, 2008
Akron, Ohio
NC Cure PH Golf Tournament
September 27, 2008
Oklahoma Frisbee Golf Tournament
September 27, 2008
Oklahoma | |
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| Vol 9/Number 15 |
July 25, 2008 |
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| AUGUST E-LEARNING EVENTS |
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Exercise & Nutrition: Ways to a Healthier PH Lifestyle
August 12, 1-2 pm ET
Online Q&A Chat
Dr. Michael Mathier (University of Pittsburgh) and Senior Pulmonary Rehabilitation Therapist Sidnie Hess (INOVA Fairfax Hospital) will discuss a variety of issues regarding exercise, nutrition and PAH. These will include the types of exercise tests used to assess a patient's status and response to treatment, and recommendations about safe, manageable exercise programs to maintain optimal health in patients with PAH. We will also offer suggestions and quick tips on how to obtain and maintain healthy nutritional habits while managing PAH.
Emergency 101: How to Prepare Yourself and Others for PH Emergencies
August 26, 3-4 pm ET
Online Q&A Chat
This session will be a follow-up to the Medically Led Session Dr. Debbie Levine (University of Texas) moderated at Conference. Those who missed Dr. Levine's Conference session will be able to learn about situations when pulmonary hypertension becomes an emergency, either because of progression of the underlying disease, because of some superimposed complication, like a blood clot or pneumonia, or because of a complication of a medication or the delivery system. Those who attended Dr. Levine's Conference session are encouraged to log-on to ask follow-up questions and learn more about this important topic! Dr. Levine will be joined by Marilyn Schmidt, R.N. (BryanLGH Medical Center).
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| TOM LANTOS PH RESEARCH AND EDUCATION ACT INTRODUCED: TAKE ACTION TODAY |
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  This week, Rep. Kevin Brady (R-TX) and Rep. Lois Capps (D-CA) introduced the Tom Lantos Pulmonary Hypertension Research and Education Act (H.R. 6568) in the House of Representatives. H.R. 6568 is named after long-time PH champion, former Representative Tom Lantos, who passed away in February. This bill replaces the previous PH bill in the House of Representatives, and it is urgent that representatives show their support for their constituents in the PH community by co-sponsoring the new bill, H.R. 6568. Tom Lantos was well respected in Congress, and pulmonary hypertension is gaining wide recognition on Capitol Hill. This is the perfect opportunity for representatives to make a difference, while at the same time honoring their colleague. However, they can't co-sponsor the bill if they are unaware of it. Take a moment today to e-mail your representative and request co-sponsorship of the Tom Lantos Pulmonary Hypertension Research and Education Act. Then, consider following up with a face-to-face visit. Learn more at PHA's District Visit page or by contacting Katie: advocacy@PHAssociation.org or 301-565-3004 x749. |
| WATCH THE PREMIERE PHODCAST OF PH ON DEMAND WITH DR. ROBYN BARST AND EMILY MITCHELL |
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Periwinkle Films, in cooperation with PHA, is trying out a new opportunity for the PH community to interact and learn from each other. PH on Demand is a talk show-style prerecorded video webisode, or "PHodcast". The first PHodcast features an interview with Dr. Robyn Barst and the PH Journeys story of Emily Mitchell. Watch the premiere PHodcast of PH on Demand and give us your feedback (in the questions tab). |
| BRAZIL'S ABRAF AND PHA SIGN MEMORANDUM OF UNDERSTANDING |
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 PHA is pleased to announce that we have signed a Memorandum of Understanding (MOU) with Brazil's Associação Brasileira de Amigos e Familiares de Portadores de Hipertensão Arterial Pulmonar (ABRAF). We welcome them to the ranks of the many established international associations partnering to share best practices, heighten awareness and work towards a cure in the fight against pulmonary hypertension. ABRAF is the 16th international PH association to sign a MOU with PHA. |
| SUPPORT GROUP MEETINGS IN AUGUST |
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 PH patients are beating the heat and continuing to meet throughout the summer. The following groups have meetings in August: Nebraska/Western Iowa (August 2) Tri-State: Ariz/Calif/Nev: Las Vegas, Clark County and Colorado Region (August 2) Central Florida (August 4) Hershey, Penn. (August 4) Silver Spring, Md. (August 4) Cleveland-Inner City, Ohio (August 9) Hampton Roads, Va. (August 9) Midlands, S.C. (August 9) Delaware Valley, Penn. (August 9) Stamford, Conn. (August 12) Pittsburgh, Penn. (August 16) Dayton and Northern Ohio (August 16)
St. Louis, Mo.(August 16)
Winstom-Salem, N.C. (August 19) North Jersey, N.J. (August 21) Victoria, Texas (August 23) Northwest Michigan (August 23) Charlotte, N.C. (August 23) Asheville, N.C. (August 23) Mississippi (August 26) Greenville, N.C. (August 27) North Shore, N.Y. (August 27) Orlando, Fla. (August 28) Find a group near you. No group? Get help finding patients and/or help starting up a new group in your town. Contact Debbie Castro, supportgroups@PHAssociation.org. |
 PH IN THE NEWS |
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Organ Donation Finding Place Online in Texas, Other States
(Dallas Morning News) -- Donors can specify the body parts they want to donate and make changes online. They can also remove their names from the list online. For Stu Berwick, a 49-year-old Dallas resident, the online registries also allow people to learn more about organ donation. Read StoryNew Caregiver Guide for Chronic Lung Disease
(American Lung Association) -- The American Lung Association and Krames Publishing have teamed up to produce the Caregiver's Guide for Chronic Lung Disease. Read StoryDartmouth Researchers Discover Gene Signatures for Scleroderma
(GEN) Hanover, NH -- Distinct genetic profiles can discern different groups of patients with scleroderma, a vexing autoimmune disease in which the body turns against itself, Dartmouth Medical School researchers report. Their discovery of distinguishing molecular subtypes within the disease offers new insight into the complexity of a poorly understood and hard to treat illness and opens a window for better diagnosis and targeted therapies. Read Story
Ikaria's INOflo (Nitric Oxide) for Inhalation Approved in Japan(PRNewswire) Clinton, N.J. -- Ikaria Holdings, Inc., through its subsidiary INO Therapeutics LLC, announced that Japan's Ministry of Health, Labor and Welfare has approved INOflo(R) (nitric oxide) for inhalation for improvement of hypoxic respiratory failure with concurrent pulmonary hypertension in neonates. INOflo (brand name INOmax(R) in the United States) has been shown to improve oxygenation and reduce the need for ECMO, a highly invasive cardiopulmonary bypass procedure. Read Story
FDA Updates Definity Optison Warning
(NewsInferno.com) -- Healthcare providers were notified about labeling changes for Definity and Optison, micro-bubble contrast agents used in sonograms of the heart. The revised Boxed Warning and Warnings continue to highlight the risk of serious cardiopulmonary reactions during or within 30 minutes following the administration of Definity and Optison. Read Story
Pulmonary Arterial Hypertension More Severe in Carriers of BMPR2 Mutation
(Abkhazia Institute for Social and Economic Research) --Among patients with pulmonary arterial hypertension, those with germline mutations in the gene encoding bone morphogenetic protein receptor 2 present at an earlier age and with more severe hemodynamic compromise, according to findings from a French study. Read Study |
| ONLINE ASSISTANCE AVAILABLE FOR SOCIAL SECURITY AND SUPPLEMENTAL SECURITY INCOME (SSI) CLAIMS APPEALS |
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PH patients receiving Social Security or Supplemental Security Income assistance have the right to appeal decisions regarding their claims. Don't be daunted by the appeals process!
When the Social Security Administration (SSA) makes a decision about a claim, they send a letter to the beneficiary explaining why the decision was made. If you receive a letter that changes your benefits, you can file an appeal to have the decision overturned or changed.
The SSA provides an online guide to answer your questions about when you can appeal a decision and how to do it effectively. |
| NEW! PHA WATER BOTTLES |
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 Just in Time for Summer Our 28 oz. sports bottles are contoured and have a tapered base to fit in most cup holders. PHA water bottles are "poly-safe" and are molded from food-safe PETE, which is BPA free. Price: $7 Purchase a PHA Water Bottle
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