Scleroderma Foundation eLetter

Did You Know we have links to Sister Organizations on our Web site? Search the list.

Photo of the Week

"On July 25–27, I was extremely fortunate to attend the Scleroderma Foundation's 2008 National Conference in Manhattan Beach, California. I arrived a day early and stayed a day later so I would have time to sight-see. I saw things like the Hollywood sign, Mann's Chinese Theatre, the Kodak Theatre, Tim McGraw's star on the Walk of Fame and Fisherman's Village in Marina del Rey. I even stood on Rodeo Drive. My favorite things were the Manhattan Beach Pier, the Santa Monica Pier, and standing in the Pacific Ocean at Venice Beach." Evette Britton, Tennessee Chapter Board member

Commemorative Stamp for Scleroderma

Grabber Warmers has created a very special online offer for you. If you would like to purchase any products from their Web site, you will receive free shipping and 15% off your total order. Enter code SCFO2009 during checkout to receive the discount. This offer is valid until 12/31/09). Use this link to get the discount.


Friday, September 5, 2008– Issue #260	eLetter Archive

Attention SF Research Grant Applicants!

There are less than two weeks left to submit your application for consideration for the Scleroderma Foundation's research grant funding program!! New and established researchers are encouraged to apply for this valuable research opportunity. All eligible entries will be evaluated by an academic peer review committee, and all acceptances will be based on merit and availability of funds. To access more information about the program and/or to download application materials, go to www.scleroderma.org/research/researchhome.shtm.

Grant Application Deadline: Sept. 15, 2008 by 5 p.m. EST.

SCLERODERMA FOUNDATION
ADVOCACY ACTION ALERT

Lifetime Insurance Caps Bills Introduced in the U.S. Congress

Health Insurance Coverage Protection Act

HR 6528 Sponsored by Rep. Anna Eshoo (D-14th CA

S 2706 Sponsored by Sen. Byron Dorgan (D-ND)

Rep. Anna Eshoo and Senator Byron Dorgan have introduced legislation to address the aggregate spending limits placed on insurance policies after which the policy no longer provides coverage. This issue is of particular interest to those with rare diseases who require often high cost orphan drug therapies and chronic care.

New Approaches May Help Tame Scleroderma

NEW YORK — The marked decrease in mortality relating to renal crisis in patients with scleroderma because of the widespread use of ACE inhibitors has been accompanied by a huge increase in deaths from lung disease.

Telephone Counseling Improves Lung Transplant Quality of Life

Telephone Counseling
Telephone-based counseling significantly improved the psychological well-being and quality of life of people awaiting lung transplantation, according to the largest clinical trial of its kind, conducted by researchers at Duke University Medical Center and Washington University in St. Louis.

Low Versus High-dose Iloprost Therapy Over 21 Days in Patients with Secondary Raynaud's Phenomenon and Systemic Sclerosis: A Randomized, Open, Single-center Study

ABSTRACT
Objective. We compared the efficacy of different dosages of longterm iloprost treatment on Raynaud's phenomenon (RP), ulcer healing, skin thickening, and progression of internal organ sclerosis in patients with systemic sclerosis (SSc).

The Nationwide Series Races T.S. Hanna

With Tropical Storm Hanna threatening the entire east coast, Nascar hopes she will not affect the Sprint and Nationwide Series races scheduled for the Richmond International Raceway this coming weekend. Bobby and the entire Rensi Motorsports/Peanut Shop of Williamsburg team are gearing for the Emerson Radio 250 held at this historic venue located in Virginia.

Richmond International Raceway is a 3/4-mile D-shaped, asphalt race track located just outside Richmond, Virginia in Henrico County. It hosts the NASCAR Sprint Cup Series and Nationwide Series. "America's Premier Short Track" also hosts the Indy Racing League IndyCar Series, and the United States Auto Club Silver Crown and National Sprint Car Series. It is also one of a few race tracks to host all of its events under the lights. The track has sold out the last 32 NASCAR Sprint Cup Series races.

You can watch Bobby and all the action tonight, September 5, at 7:30 p.m. on ESPN2. Check your local listings for the broadcast time in your area.

Upcoming Events

	September 6 (Sat.) Educational Forum (Liverpool, N.Y.)
	September 6 (Sat.) Educational Meeting with Dr. David Collier (Denver, Colo.)
	September 7 (Sun.) "Stepping Out to Cure Scleroderma" (Burlington, Vermont.)
	September 13 (Sat.) Patient Education Day (Chicago, Ill..)
	September 13 (Sat.) Ride for Scleroderma" Motorcycle Ride (Henderson, Minn.)
	September 14 (Sun.) "Stepping Out to Cure Scleroderma" (Topsfield, Mass.)
	September 15 (Mon.) 3rd Annual Teeing It Up "Fore" Scleroderma, Golf Outing (Chicago, Ill.)
	September 20 (Sat.) "Stepping Out to Cure Scleroderma" (Olive Branch, Miss.)
	September 20 (Sat.) "Stepping Out to Cure Scleroderma 5K Family Fun Walk" (Seattle, Wash.)
	September 21 (Sun.) Michigan Chapter's Fall Education Event (Birmingham, Mich.)
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_260.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.