Scleroderma Foundation eLetter
eLetter #405
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Greetings!  

Early Bird Conference Registration
Ends Tuesday, June 21 


Early Bird Deadline - 2011The last day to book your conference program registration at the early bird discounted rate is Tuesday, June 21. Be sure you don't miss out on the excellent programming at this year's National Patient Education Conference in San Francisco July 8-10. Register today!  

 

More Conference Workshops Added to the Lineup!

 

Katsumoto-HaydenTamiko Katsumoto, M.D., will give a lecture on "Overlapping Conditions in Systemic Sclerosis."  She is actively involved in the Scleroderma Clinic at the University of California San Francisco, Department of Medicine, Division of Rheumatology.  Her research encompasses basic and translational studies relating to scleroderma pathogenesis.

 

Leslie Hayden Malloy, Ph.D., C.C.N., nutritionist, will host "Nutritional Needs for Scleroderma." She has been interested in nutrition and has worked in the health care field for 30 years. Dr. Hayden graduated from University of California Davis in February 2001 with a doctorate in nutrition science and endocrinology. She has published several papers on Vitamin A metabolism in breast cancer cells. Dr. Hayden has a strong background in Dietetics and teaches nutrition science at both San Francisco State University and Santa Rosa Junior College. She has a private consulting business in Petaluma California and is most passionate about her work with patients experiencing chronic conditions. Her mission is to help individuals increase their "health span" through better nutrition.

Actelion Athletes Conquer Escape from Alcatraz Triathlon 

On Sunday, June 5, 25 Actelion employees joined 2,000 fellow athletes in San Francisco's Escape from Alcatraz triathlon, consisting of a 1.5-mile swim from Alcatraz Island in the frigid San Francisco Bay, a hilly 18-mile bike ride and an 8-mile run including a grueling 400-step staircase. These Actelion Athletes dedicated the race to the Scleroderma Foundation to raise awareness of this debilitating disease and its associated diseases, like pulmonary arterial hypertension (PAH).   

Actelion Athletes at Alcatraz

The athletes formed eight teams of three and split the race segments - swimming, biking, and running - so that each member participates in one segment.  In this year's Escape from Alcatraz race, the Actelion Athletes dominated the co-ed division with three teams in the top 10, placing tenth (Ro-Ho-xDo), ninth (The Placebo Effect) and third (Humuhumunukunukuapua'a). John Marino, vice president of the Eastern Business Unit, who participated in all three segments by himself, achieved a personal record in this event of finishing under 4 hours!

 

Actelion Athletes was formed three years ago by three co-workers who were training and competing in a triathlon and it quickly grew into a company-wide program.  Throughout the past few weeks, we've introduced you to a few of the men and women (newsletter  1,  2,  3,  4 and 5) who dedicated every stroke, pedal and step they took to the Scleroderma Foundation and patients who battle scleroderma and its associated diseases.

 

"Knowing we had the support of the Scleroderma Foundation community really kept us going to do our best and finish strong," said Ernie Ross, senior director of market access and Actelion Athlete.  "It was truly a privilege to dedicate this race to all of those brave individuals who have to fight their disease every day."   

 

Actelion Awards Grants to 2011 ENTELLIGENCE Investigators for Research in PAH

 

Actelion Pharmaceuticals US, Inc. and the ENTELLIGENCE Steering Committee recognized four young researchers and their mentors for their efforts in advancing research in PAH. Each researcher will receive a 12-month mentored grant of up to $100,000 in support, funded through the ENTELLIGENCE program supported by Actelion.

 

Read the full press release

Video: Scleroderma and Social Security Disability Insurance 

Jonathan Ginsberg, a lawyer from Atlanta, Ga., discusses a recent case about scleroderma and Social Security Disability Insurance in this video.  

Click the image to view the video on YouTube.
Click the image to view the video on YouTube.

You can also check out resources from SocialSecurity.gov about the "Effect of Work on SSDI Benefits." 

Be an Empowered Patient 

Inspire Company LogoInspire, the online community where you can meet others affected by scleroderma, recently interviewed Kevin Pho, M.D., about using Web information to empower yourself as a patient and being more active in your treatment.

Read the entire Q&A with Dr. Pho now. Dr. Pho is a popular Web blogger on KevinMD.
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