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Photo of the Week

SF Staff at NASCAR Race

National staff members Frannie Waldron, Elysia Cappellucci and Mary Ann Berman were in New Hampshire to watch Team Rensi driver Bobby Hamilton, Jr. race.

Scleroderma Foundation eLetter

Friday, July 4, 2008– Issue #25

eLetter Archive

Rajan Saggar, M.D.

Rajan Saggar, M.D..

Cindy Coney, M.Ed.

Cindy Coney, M.Ed.

Scleroderma Foundation National Conference Speakers Update

"Maximizing Life, Minimizing Stress" by Cindy Coney, M.Ed. and "Pulmonary Hypertension" by Rajan Saggar, M.D.

Attention Individuals Using Actelion's PAH Medications:

Actelion Pharmaceuticals

Ever wish you could discuss with other individuals your questions or concerns regarding your Actelion PAH medications?  Well, wait no more! 

Shal Jacobovitz, President of Actelion Pharmaceuticals, announced this past Tuesday, July 1st, that Actelion will be launching a new patient support service entitled: Sure Steps Connect:  A Web Program for Patients on Actelion PAH Medications.

Pulmonary Hypertension Association logo

Scleroderma Foundation at PHA Conference in Houston, Texas

Thanks to its ongoing partnership with the Pulmonary Hypertension Association, The Scleroderma Foundation took part in the Association’s 8th International PHA Conference this past June in Houston, Texas.

MediQuest Therapeutics

FDA Grants Priority Review for MediQuest’s Drug Application to treat Raynaud’s Disease

BOTHELL, WA – MediQuest Therapeutics Inc. today announced that it has been granted priority review status from the U.S. Food and Drug Administration (FDA) for its New Drug Application (NDA) for MQX-503, a topical formulation designed to treat Raynaud’s Disease.

Setting limits on caregiving

When and How To Say "No" to Caregiving

How does a caregiver know when he or she can no longer manage the daily caregiving routines and planning responsibilities? What signals alert the caregiver that he or she is in trouble of getting lost in caregiving? Can a caregiver who cherishes a loved one set limits on responsibilities without feeling guilty or morally bankrupt? These are questions at the heart of successful, long-term caregiving.

Orphan drug act

OPINION: The Orphan Drug Act Has Been a Huge Success

The Wall Street Journal - In more than 32 years with McDonald's, I worked my way up from grill man to president and CEO by focusing on providing shareholder value while fulfilling a need. In that vein I'd like to recognize the 25th anniversary this year of a groundbreaking piece of legislation that has made it easier for drug companies to do exactly that.

NIAMS Scientists Find Potential New Way to Block Inflammation in Autoimmune Disease

Researchers from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part of the National Institutes of Health (NIH), have identified a promising new target for autoimmune disease treatment — a cell-surface receptor called DR3.

The Nationwide Series Returns to Daytona

With eighteen races completed, the NASCAR Nationwide Series starts the second half of its season with the Daytona 250 at the famed Daytona International Speedway. It is one of the two tracks the circuit that uses restrictor plates to slow the cars down due to the high banking, the other being Talladega Superspeedway. However, there are some differences in the racing at the two tracks, as Daytona is narrower and more handling-oriented than Talladega, which allows the huge packs to break up somewhat on long runs, which makes "the Big One" that plate tracks are famous for less frequent and usually on a start or restart, as opposed to Talladega, where such huge wrecks occurs in almost every race in almost any situation.

You can celebrate the Fourth of July and watch Bobby Hamilton Jr. and the Team Rensi Motorsport/Smithfield #25 Ford Fusion on Friday at 7:30 p.m., EST on ESPN2. Check your local listings for the time in your area.

In the meantime, check out the great photo (click for larger version) of The Scleroderma Foundation’s Mary Ann Berman along with Bobby Hamilton Jr. next to the #25 car (note Scleroderma logo on the car as well as on Mary Ann’s hat. Also note Mary Ann’s T-shirt which sports the Rensi and Smithfield logos. See the "Photo of the Week" for the huge Scleroderma logo on the back of the shirt.)

Upcoming Events

July 12 (Sat.) "Stepping Out to Cure Scleroderma" walk (Portland, Ore.)
July 13 (Sun.) "Stepping Out to Cure Scleroderma" walk" (San Diego, Cal.)
July 19 (Sat.) Moose Pass, Alaska - Scleroderma Picnic
July 25-27 (Fri.-Sun.) National Conference (Manhattan Beach, Cal.)
Complete SF Calendar

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

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