Scleroderma Foundation eLetter

Did You Know?

Did you know that you can become a member of the Scleroderma Foundation for a minimum donation of $25?

June Is Scleroderma Awareness Month

June is Scleroderma Awareness Month, and in honor of this, many events are being held across the country to promote awareness and advocate for research.

Chapters and support groups all over the nation are doing a great job promoting the Scleroderma Foundation’s mission of support, education, and research in a variety of ways, such as walks, picnics, and dinner parties. To become involved in any of these activities and/or to find a local event taking place in your area, please visit the Scleroderma Foundation’s calendar of events.

Photo of the Week

Shannon Abert, Texas Chapter Board Secretary, and Phyllis McCullough, Texas Chapter Board member, attended the May 10 walk in Corpus Christi, Texas.


Friday, May 30, 2008– Issue #246	eLetter Archive

Janet Poole, PhD, OTR/L

Persons with Scleroderma Needed for Research Study

Researchers from the University of New Mexico are seeking participants for a study to evaluate a self-management program for people with scleroderma. To be eligible, you must have been diagnosed with limited or diffuse scleroderma, be 21 years of age, communicate in reading and writing in English, reside in the United States, and be willing to complete the study protocol.

Daniel Furst, M.D.

JoAnna Harper-Chapek

Scleroderma Foundation National Conference Speakers Update

"Scleroderma Tests," by Daniel Furst, M.D. and "Pharmacology/
Understanding your Medications," by JoAnna Harper-Chapek

Gilead Announces New Letairis® (Ambrisentan) Data for the Treatment of Patients With Pulmonary Arterial Hypertension (WHO Group 1) With WHO Functional Class II or III Symptoms

Analysis of Ambrisentan Use in Patients Previously Receiving Placebo in the ARIES-1 and ARIES-2 Studies Presented at the International Conference of the American Thoracic Society.

U.S. Dept. of Transportation – Final Rule Allowing Air Concentrators on Flights

The U.S. Department of Transportation took another step in the right direction this month by issuing a final rule requiring airlines to accept certain approved portable oxygen concentrators onboard flights. The rule will apply to U.S. air carriers worldwide and to foreign air carriers whose flights begin or end in the U.S. Five portable oxygen concentrators have been approved for passengers to carry aboard aircraft: AirSep FreeStyle, AirSep LifeStyle, Inogen One, Respirnics EverGo and Sequal Eclipse.

Undiagnosed Diseases Program

Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program pursues two goals:

To provide answers to patients with mysterious conditions that have long eluded diagnosis
To advance medical knowledge about rare and common diseases

From left: Lin Stratton, Philanthropic chair of the central California council and 2008 state philanthropic chair and Frannie Waldron, Scleroderma Foundation CEO

Beta Sigma Phi Continues Its Support of the Scleroderma Foundation

The California Councils of Beta Sigma Phi held their annual statewide convention May 16–18 in Fresno, California. The sisters of Beta Sigma Phi have been supporting the work and mission of the Scleroderma Foundation since 1980. In fact, they were the first major, national organization to “adopt” scleroderma as a cause when the California Councils decided to support what was then the United Scleroderma Foundation.

Bobby Hamilton, Jr.

Bobby Hamilton, Jr. Versus The Monster Mile

Bobby Hamilton, Jr. and the Rensi Motorsports/Smithfield #25 Ford Fusion move north to compete in the Heluva Good! 200 at the famed Dover International Speedway in Dover, Delaware.

Dover is unique in many ways. It is exactly one mile long. Technically this means that it is neither a superspeedway nor a short track. And while most NASCAR track surfaces are asphalt, this speedway surface is concrete which is notoriously hard on cars, bringing about its nickname of The Monster Mile. One thing is certain—exciting racing.

Be sure to watch Bobby compete on Saturday, May 31. It can be seen on ESPN2 at 2:30 p.m. Be sure to check your local listings for the time in your area.

Upcoming Events

	June 1 (Sun.) "Stepping Out to Cure Scleroderma" Family Picnic (Omaha, Neb.)
	Many walks during the week of June 1—8. Please check our calendar for a location near you!
	June 7 (Sat.) Bowl-a-thon for Scleroderma, Benefitting the Nevada Chapter (Henderson, Nev.)
	June 14 (Sat.) "Cooking Up a Storm for Scleroderma" (Durham, N.C.)
	June 14 (Sat.) "Stepping Out to Cure Scleroderma" Walk (Clemson, S.C.)
	June 14 (Sat.) "Stepping Out to Cure Scleroderma" Walk (Poughkeepsie, N.Y)
Complete SF Calendar

Scleroderma Foundation, 300 Rosewood Drive, Suite 105, Danvers, MA 01923
Phone 978-463-5843 · 800-722-HOPE (4673)

If you cannot view the eLetter, or the links do not work, you can read it on the Web at www.scleroderma.org/e-letters/eLetter_246.htm. If someone has forwarded this eLetter to you, and you wish to subscribe to this FREE weekly publication, go to www.scleroderma.org/e_letter_signup.shtm.