Scleroderma Foundation

In This Issue

Volunteers to Visit Capitol Hill, Oct. 7–8

Newsmaker: Thomas A. Medsger, Jr., M.D.

People with Scleroderma Needed for Research Study

Fact Sheet Released on Pulmonary Hypertension and Stem Cell Therapy

Food Diet for Acid Reflux

Juvenile Systemic Sclerosis

Raynaud Phenomenon

List of Autoimmune Diseases

Donate Your Vehicle

New Book and CD in Our Store!

Scleroderma Student Essay Contest

Upcoming Events

Stepping Out Walks

Advocacy Update

PHOTO OF THE WEEK

From left: Emily Lindner, Springfield Support Group; Dan Wadlington, Public Information Officer for Congressman Roy Blunt (R-MO; 7th); and Mary Blades, Missouri Chapter President. Mary, Emily, and Tom Lindner (not shown) visited with Mr. Wadlington to "ask him to convey to the Congressman how much, as constituents, we need him to sign on to HR 2408, not only for us, but for the thousands of people that suffer from scleroderma," said Mary.
From left: Emily Lindner, Springfield Support Group; Dan Wadlington, Public Information Officer for Congressman Roy Blunt (R-MO; 7th); and Mary Blades, Missouri Chapter President. Mary, Emily, and Tom Lindner (not shown) visited with Mr. Wadlington to "ask him to convey to the Congressman how much, as constituents, we need him to sign on to HR 2408, not only for us, but for the thousands of people that suffer from scleroderma," said Mary.

Scleroderma Student Essay Contest

Choosing scleroderma as a research topic helps to not only spread the word about the disease, but also helps to inform others about how they too can join the fight against scleroderma. You can win a Wii system or even a trip to Boston!

Stepping Out to Cure Scleroderma Walks – There Are More Left!

Find a walk near you!

Scleroderma Legislation

Learn more about these bills.

S. 1545

H.R. 2408

Pfizer, Inc. Logo

2009 Communications Sponsor

Scleroderma Foundation eLetter

Friday, September 18, 2009– Issue #314

eLetter Archive

U.S. CapitolVolunteers to Visit Capitol Hill on October 7 and 8

A group of Scleroderma Foundation volunteer advocates will make office visits to members of the U.S. House of Representatives and the U.S. Senate on Capitol Hill in Washington, D.C., Oct 7–8 to urge them to become co-sponsors of two scleroderma-specific bills, H.R. 2408 and S. 1545.

Thomas A. Medsger, Jr., M.D., Scleroderma Foundation's Lifetime Achievement Award winner.

Newsmaker: Thomas A. Medsger, Jr., M.D.

Thomas A. Medsger, Jr., M.D., was recently featured in the "Pittsburgh Tribune-Review" for the "Lifetime of Achievement" award he received from the Scleroderma Foundation.

Dr. Medsger is a Gerald P. Rodnan Professor of Medicine at the University of Pittsburgh School of Medicine and director of the Scleroderma Research Program, where, over the past 35 years he has followed about 4,000 patients.

Dr. Medsger is also a member of the Western Pennsylvania Chapter and serves the Chapter in three capacities: as a member of the Chapter’s Medical Advisory Board, as the treasurer of the Board of Directors, and as the interim president.

Woman at workPeople with Scleroderma Needed for Research Study on Challenges to Keep Working

Researchers from the University of New Mexico are seeking participants for a study to identify challenges and adaptations made by persons with scleroderma to continue working.

PHA NewsFact Sheet Released on Pulmonary Hypertension and Stem Cell Therapy

During the past few months, there has been much discussion in the PHA community about adult stem cell therapy for pulmonary hypertension patients. PHA's Scientific Leadership Council (SLC) issued a statement in May 2009 stating that stem cell use has not been adequately studied and neither the efficacy nor safety of stem cells to treat PAH has been established.

Food Diet for Acid Reflux

Food Diet for Acid Reflux

Affecting millions of people around the world, the way to combat acid reflux is to work out a diet for it. Ideally the food plans for acid reflux diet should include, a list of all the foods that are safe to eat and the ones to avoid. Here, is a look at how you can incorporate a food diet for acid reflux, with minimal hassles.

Acid reflux also referred to as Gastro Esophageal Reflux Disease, is a condition caused by the back flow of the acid, from the stomach into the esophagus.

emedicine from WebMD logo

Juvenile Systemic Sclerosis

Juvenile systemic sclerosis (JSSc) is a rare connective tissue disease of unknown etiology. Characteristic features include fibrosis of the skin, subcutaneous tissues, and internal organs as well as abnormalities of the vascular and immune systems occurring in children 16 and younger. This disease is one of the most severe rheumatologic conditions diagnosed in children.

Raynaud Phenomenon

Raynaud Phenomenon

Raynaud phenomenon manifests as recurrent vasospasm of the fingers and toes and usually occurs in response to stress or cold exposure. The phenomenon is named for Maurice Raynaud, who, as a medical student, defined the first case in 1862 as "episodic, symmetric, acral vasospasm characterized by pallor, cyanosis, suffusion, and a sense of fullness or tautness, which may be painful."

List of Autoimmune Diseases

List of Autoimmune Diseases

At a glance, the term 'Autoimmune Diseases' sounds ironic. How can immune and diseases come together? We have always known that where there is immunity, there are no diseases. Immunity is supposed to protect us from external factors that cause diseases. And all this is true somehow, because autoimmune diseases are the diseases that are caused because of the malfunctioning of our own body. How?

Cars 4 Causes

Do You Have a Vehicle to Donate?

Cars 4 Causes ® is the #1 choice for donating your car, truck, boat, RV, or motorcycle—running or non-running—to the Scleroderma Foundation. Cars 4 Causes has partnered with Scleroderma Foundation. Cars 4 Causes specializes in car donations and your donation through Cars 4 Causes will help raise money for the Foundation.

"Journey to Wholeness—The Stages of Illness," by Cindy ConeyNew Book and CD in Our Store!

"The Wild Woman's Guide to Living with Illness"
by Cindy Coney

Buy book.

CD – "Journey to Wholeness—The Stages of Illness"
by Cindy Coney

Buy CD.

Upcoming Events

Sept. 19, (Sat.) "Stepping Out to Cure Scleroderma" Walk (Longview, Texas)
Sept. 19, (Sat.) "Stepping Out to Cure Scleroderma" Walk (Corpus Christi, Texas)
Sept. 19, (Sat.) 3rd Annual "Stepping Out To Cure Scleroderma" 5K Family Fun Walk (Seattle, Wash.)
Sept. 20, (Sun.) Third Annual Vermont Walk-A-Thon To Cure Scleroderma (Burlington, Vermont)
Sept. 21, (Mon.) "Fight for Lexi" Charity Golf Tournament benefitting the Scleroderma Foundation, Southern California Chapter. (Dove Canyon, Calif.)
Sept. 24–26, (Thurs–Sat.) Pulmonary Hypertension Association 2009 PH Resource Network Symposium (Arlington, Va.)
Sept. 25, (Fri.) A Night At JD’s Key Club, Benefitting the Michigan Chapter (Pontiac, Mich.)
Sept. 26, (Sat.) 2nd Annual Scleroderma Foundation, Northwestern Patient Education Day (Chicago, Ill.)
Sept. 26, (Sat.) Sixth Annual Harvest Dance To Cure Scleroderma (Plymouth, Mass.)
Sept. 26, (Sat.) "Stepping Out to Cure Scleroderma" Walk (Lake Geneva, Wis.)
Sept. 26, (Sat.) Patient Education Seminar (Sacramento, Calif.)
Sept. 26, (Sat.) 7th Annual "Stepping Out to Cure Scleroderma" Walk (Sacramento, Calif.)
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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