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Newsroom |
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| Recent ISN Website News and New Patient Stories |
| Attention Scleroderma Researchers! $50 million available in 2010 for the Peer Reviewed Medical Research Programs: Global Funding |
| Four different types of research grants are available from the Department of Defense (DoD) Peer Reviewed Medical Research Program (PRMRP) for a select group of rare diseases, including scleroderma. This includes clinical trials, concept awards, Investigator-Initiated Research, and Technology/Therapeutic Development. Reposted 09/07/10. |
| Pulmonary Hypertension Research Panel in U.S. — Qualified participants will earn $50.00, plus opportunity to earn more! |
 WWMR, a division of IntrinsiQ, is searching for patients diagnosed with PAH or their caregivers to serve on their research panel. Qualified participants will earn $50.00, plus the opportunity to earn more money by participating in future research studies. Participants must either be diagnosed with PAH, or be a caregiver for someone living with PAH. To learn more, and to see if you qualify, call WWMR toll free at 1-888-947-2339 and select option 4, or email PAH_Panel@wwmr.com. (Also see: ISN Newsletter: Do you have PAH? and Pulmonary Hypertension Research Registries) Posted 09/06/10.
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| ISN Sclero e-Newsletter: News you can use! |
 ISN Sclero e-Newsletter is now free to everyone who registers for it! Just submit your email address and you will begin receiving it by email. Our newsletters cover a wide range of scleroderma-related topics. The March 24 issue features information on advances in scleroderma research and alternative therapies. It also promotes our current Pampered Chef fundraiser so it is a good issue to forward to your family and friends since they can participate in it as well. Sign up for the free Sclero e-Newsletter now! It only takes a second to garner a lifetime free membership! Posted 09/05/10. |
| Do you have diffuse scleroderma and are between the ages of 18 and 69 (inclusive)? |
| The SCOT Trial (Scleroderma: Cyclophosphamide Or Transplantation) is still recruiting patients who have diffuse scleroderma. The SCOT trials are comparing the potential benefits of stem cell transplant and high-dose monthly cyclophosphamide (Cytoxan) in the treatment of scleroderma. (Also see: SCOT Trial) Reposted 09/04/10. |
| Do you have digital (finger) ulcers? |
| The scleroderma DISTOL trial is still recruiting patients who have active digital ulcers. Reposted 09/03/10. (Also see: DISTOL Trial) |
| Actelion Pharmaceuticals is Tackling Scleroderma Now! |
 The International Scleroderma Network thanks Actelion Pharmaceuticals for their generous grant to tackle scleroderma and pulmonary hypertension now! Reposted 09/02/10. |
| New Facebook Event Page for ISN Scoring for Scleroderma 5th Annual Fundraiser by Lisa Bulman! |
| New Facebook Event Page for Scoring for Scleroderma 5th Annual Fundraiser to benefit the nonprofit International Scleroderma Network is off to a great start! The Scoring for Scleroderma fundraiser, which is a women's soccer tournament, is scheduled for Friday, September 17, 2010. Our indoor fields, located at The Bridgewater Dome in Bridgewater, Massachusetts have been donated, and our Platinum Sponsor is WWMR/IntrisiQ. We are expecting at least 50 to 60 people to participate as well as other goods to be donated, such as water and soccer balls. We are all very excited and looking forward to this being another great success! Register as a Soccer Player here. Posted 09/01/10 by Lisa Bulman, ISN Fundraiser. |
| New Personal Stories |
| Mars: Scleroderma with Full Gastrointestinal Involvement I finally started total parenteral nutrition (TPN, or tubal feeding) in May 2010 and it was an absolute success... |
| Sonya D: Surviving Daughter of Systemic Scleroderma Patient (Portugal) She had difficulty eating, drinking and digesting her food, but yet doctors had no clue... |
| Hazel: Morphea Scleroderma In 1962 when I was just twelve years old, my mother took me to our family doctor with what looked like a blister under my right eye... |
| Angela R: Linear Morphea Scleroderma I am twenty-five now and only have the two spots that I deal with pretty easily. I just hope it doesn't get worse... |
| Heather A: Scleroderma (South Africa) My fingers started to curl up and I could not wear any rings on my fingers anymore as they were so swollen... |
| More New Stories: May-July 2010 |
Submit Your Patient, Caregiver or Survivor Story in:
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Italiano | Polski | Russian | Spanish | Turkish | Other Languages |
| We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes. |
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| Go to Website News: August 2010 |
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Player Registration for 5th Annual Scoring for Scleroderma Soccer Tournament in Bridgewater, Massachusetts.
