Photo of the Week

Dr. Jim B. Duke and family from Ocala, Fla. have found hosting events at their home is a great way to invite community members to learn more about scleroderma and raise funds for research. As Dr. Duke explains, “The two most effective ways that our family has found to raise awareness are the Cooking up a Storm for Scleroderma dinners and the teal wrist bands. There is no better way to spread the word than to have a beautiful night full of fun, food, and fellowship. ….a recipe for success!”

Stepping Out to Cure Scleroderma Walks Gearing Up

Find a walk near you!

Commemorative Stamp for Scleroderma

The Scleroderma Foundation is pursuing a commemorative stamp for scleroderma.
We need your help!

Friday, April 10, 2009– Issue #291

eLetter Archive

2009 National Patient Education Conference Scholarships
Are Available

Walter A. Coyle 1922–2009

Thanks to the generous support of Scleroderma Foundation chapters to the Walter A. Coyle Memorial Scholarship Fund and a grant from MediQuest, scholarships will be available to the 2009 National Patient Education Conference in St. Louis.

Conference scholarships are intended for people who would not be able to attend without outside financial assistance. We regret we are unable to assist all those who apply for conference scholarships; however, the Foundation will use the resources our of scholarship funds to assist as many applicants as we are able.

A patient-led committee will administer the award process based on available funds. Download the application here. The application deadline is May 28, 2009.

Public Meeting on Clinical Trial Registration and Results Reporting

The National Institutes of Health (NIH) will hold a public meeting on Monday, April 20, 2009, from 9:00 a.m. to 5:00 p.m. to gather input from interested parties on current issues in the development of regulations to expand clinical trial registration and results reporting through the National Library of Medicine’s ClinicalTrials.gov system. The expansion of clinical trial registration and results reporting was mandated by Title VIII of the U.S. Food and Drug Administration Amendments of 2007 (FDAAA).

PHA on the Road

PH Patients and Families Education Forum will present information on the mechanisms, diagnosis and treatment of PH in a regional face-to-face setting. The goal of PHA on the Road is to increase patients’ understanding of PH and educate patients on the programs and support offered by PHA.

REGISTER TODAY and please join them as they visit four cities in 2009!

Maureen Mayes, M.D.

David Leader, D.M.D.

Scleroderma Foundation National Conference Speaker Update

Scleroderma 101: An Overview, Maureen D. Mayes, M.D.

Dental Issues Related to Scleroderma, David Leader, D.M.D.

"Great Sleep Magazine" Seeks Participants in Sleep Study

High Desert Publishing is launching a nationwide sleep survey targeting sleep-deprived people.

Their goal is to find out the overall commonalities in demographics and behavior characteristics of our nation of sleep sufferers. To assure confidentiality, they will not track any e-mail addresses of respondents. They are using the information gathered through the survey to help them in the creation of the "Great Sleep Magazine."

Stomach Condition Can be Difficult to Treat

DEAR DR. GOTT: In April 2000, I was diagnosed with gastroparesis. The recovery was very difficult, and I still have some gastric problems and off and on stomach issues. What is gastroparesis, and how is it treated?

The 10th annual National Women's Health Week will kick off on Mother's Day, May 10, 2009 and will be celebrated until May 16, 2009. National Women's Checkup Day will be Monday, May 11, 2009. The eight-week Woman Challenge, an online physical activity program, starts May 10, 2009. You can register your organization and then add events to their Web site! more...

Upcoming Events

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

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