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| Upcoming Events |
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.
Let's Walk and Roll for a Cure
September 15, 2007
Akron, Ohio
INDY PH Pet Walk
September 15, 2007
Indianapolis, Ind.
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 18 |
August 31, 2007 |
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| PHANews is taking a one week hiatus in September due to our webmaster running off to frolic in Hawaii so the next issue will be one week later on September 24. Aloha! | |
| WEBSITE REDESIGN SURVEY CLOSES THURSDAY |
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Community Response Tremendous!
We've heard from a little over 400 of you already! In fact, we received 100 responses to the survey in the first few hours. Thank you for taking the time to give us thoughtful feedback in our efforts to make the website even better. Sept. 6 will be the last day of the survey, so if you haven't already, please take a few minutes to let us know what you think.
(Please note that if you click the link it may not work. Our e-mail service provider seems to have problems with the link. Just cut and paste it into your Internet browser if you have problems. We apologize for the technical difficulty.) |
 PHer STORIES IN THE NEWS |
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Janice Wade Raises PH Awareness in Her Local Media
Janice Wade of Indiana contacted PHA in June because she was interested in raising awareness about PH with her local media. Armed with her PH Aware kit, she worked with local reporters to generate an article about PH. Read article
And if you live near Baltimore, Dallas, Los Angeles, Miami, Minneapolis or New York, we could use your help spreading the word about the upcoming Free PH Medical Education Sessions. See below Medical Education Sessions story for more details
August Big Month for PHer Stories in the Media
This month there have been many amazing stories from our PH community in the news. Check out these stories of inspiration and hope.
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| FREE PH MEDICAL EDUCATION SESSIONS |
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 Sessions Start Next Week!
The first Medical Education Sessions take place next Saturday, September 8 in New York, N.Y., and Baltimore, Md. Other cities where sessions will be held are Minneapolis, Minn., and Los Angeles, Calif. on September 15 and Dallas, Texas, and Miami, Fla. on October 6.
Sessions will be led by medical leaders in PH and representatives from PHA and the Scleroderma Foundation. The sessions for medical professionals will provide CME/CEU credits.
With the first round of Medical Education Sessions just a week away, PHA is hard at work getting the word out. We've written press releases and media advisories for these sessions, but we still need something extra from you -- your personal PH story will help editors understand why these events are important enough to your community to deserve a news story.
Do you live near Baltimore, New York, Minneapolis, Los Angeles, Dallas or Miami? Would you be interested in submitting your story together with PHA's press release about the Medical Education Sessions to your local media outlets?
If so, please contact us at awareness@PHAssociation.org or 301-565-3004 x113 with the city you live near, and we will send you the press release, PH educational press kits and a contact list for media in your area. The next step is to include your personal story about PH and why educating medical professionals about PH is so important. We will then help walk you through submitting these materials to your local media outlets.
Please help us get the word out about this important, free educational event. |
 AWARENESS MONTH OPPORTUNITY:
COOKIN' FOR A CURE HOUSE PARTIES |
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 Hot Off the Presses -- PHA Announces New Signature Event!
This is one cookbook you'll really want to sink your teeth into! Whether you like to cook or not, we're pretty sure that you and your friends like to eat. That's why PHA has come up with a new, and simple, way to host a special event for PHA -- Cookin' Up A Cure House Parties.
As special events go, house parties could hardly be easier, requiring as few as one or two people to make them happen. House parties can be as grand or intimate as the host wants and they're a great way to involve others in the PH community.
PHA's Cookin' Up a Cure House Party Guide features ideas for educating family and friends and raising funds to fight PH right from the host's own home. The guide gives advice on how every individual can make a difference using their kitchen table, backyard or living room! There are a variety of themes to choose from, and hosts are encouraged to use their personal style and interests to shape the event.
Fire up your grill or heat up your frying pan and get ready to have some fun while raising awareness and funds! Order your House Party Guide today! Contact Deirdre Farrell at event@PHAssociation.org or 301-565-3004 x125. |
| MEET OUR NEW NEIGHBOR |
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 8,000 Strong: A one-man crusade becomes an army in the fight against PH
Troy Williams joined PHA after his wife passed away of PH in June. He was amazed by the support of PHA's online community and realized that he had something to give back. Troy has made it his mission to fight for a cure by becoming a member, creating awareness with the local media and talking to his Congressional representatives. Read more about Troy's fight
Membership in PHA opens the door to a community of more than 8,000 patients, caregivers and medical professionals. For more information about what membership in PHA has to offer, please contact Sarah Gawlitta at membership@PHAssociation.org. You can also learn more and join online |
 PHA AUSTRALIA HOLDS SUCCESSFUL TRIVIA NIGHT & AUCTION |
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 PHA Australia held a very successful trivia night and auction. Thanks to advertising efforts prior to the event, they reached some patients who had not previously heard of them. They started the night off by talking about pulmonary hypertension and informing those who had come but had not heard of the disease. The evening was a great success -- they raised $4500 AUD. Read story |
| PH IN THE NEWS |
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Safety Information Regarding Thelin (Sitaxsentan Sodium) and the Occurrence of Liver Toxicity, Risks to the Foetus, and Important Drug-Drug Interactions
Encysive Pharmaceuticals Inc., in consultation with Health Canada, has sent a letter to health care professionals to highlight important safety information for the safe and appropriate prescribing and use of Thelin™ (sitaxsentan sodium). Read article
PNH Patients Treated with Soliris(TM) Experienced Dramatic Reduction in Blood Clots During Clinical Trials
Soliris, developed by Alexion Pharmaceuticals, Inc., is the first therapy approved for paroxysmal nocturnal hemoglobinuria (PNH), a rare, debilitating and life-threatening blood disorder defined by the destruction of red blood cells, or hemolysis. In patients with PNH, hemolysis can cause severe anemia, disabling fatigue, recurrent pain, shortness of breath, pulmonary hypertension, intermittent episodes of dark colored urine (hemoglobinuria), kidney disease, impaired quality of life and thromboses. Read article
Breakthrough Innovation Saving Lung Transplant Patients
There's a new medical innovation that is changing the fate of patients who need a new lung. Twenty-percent of people needing a lung transplant will die waiting for one. Unlike damaged kidneys or hearts, doctors say it's very difficult to keep injured lungs working long enough to get a transplant. Read article
New Drug Could Help Pulmonary Hypertension Patients
People with a lethal high blood pressure in their lungs now have a new treatment option. Doctors say the drug called Letairis is not only more convenient than other drugs they use for pulmonary hypertension, but it is less toxic. Without treatment, pulmonary arterial hypertension (PAH) is usually fatal within three years. But the drugs used to treat it can be toxic to the liver. Read article |
| EN ESPANOL: FIRST SPANISH SPEAKING PH SUPPORT GROUP |
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Usted y sus familiares estan invitados a nuestro primer grupo de apoyo de habla Español para la hipertensión pulmonar! Si vives cerca de Dallas, Texas, puedes utilizar una oportunidad de encontrar a otros pacientes de PH que hablan español. Para mas información
In September, patients will come together in Dallas to meet and chat in Spanish. Our patients have had a Spanish-language conference call support group that meets regularly, but for the first time, those more comfortable conversing in Spanish will be able to meet in person, face-to-face! For more information |
 PH RESOURCE NETWORK SYMPOSIUM UPDATE |
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| Online Registration Ends October 1
Only 45 Free Registrations Left
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| PH WIKI ON THE WEB -- CHECK IT OUT |
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As we periodically do, PHA would like to pass on the following announcement. PH Wiki is not a PHA program.
In response to the recently expressed need for additional ways to provide and access PH-related information, PH Wiki was recently launched by a small group of parents of children with PH. While the initial focus has been on topics specific to the pediatric community, this tool is open to the adult community.
This Wiki website is powered by the same software as the Wikipedia website. All users can search for information and are encouraged to write and/or edit information as well. PHWiki.org can become an efficient and effective tool to store and mine our community's collective wisdom.
The website is very easy to use and some think it is infectiously fun. John Hess is happy to help people use the site and provide interested users with initial technical training that typically takes less than 10 minutes to get them started. John can be reached at 303-875-2413.
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