Scleroderma Foundation

In This Issue

Scleroderma Foundation National Conference Speaker Update

FDA101: Clinical Trials and Institutional Review Boards

2009 Hales Lung Conference Clinical and Pathophysiologic Aspects of Diffuse Parenchymal Lung Disease

Exercising When You Have a GI Disorder

Limitations to the 6-Minute Walk Test in Interstitial Lung Disease and Pulmonary Hypertension in Scleroderma

Living Separate Lives "Together"

Is Your Skin Dry?

CPF Launches National PSA to Educate Public on Pulmonary Fibrosis

2009 National Patient Education Conference Scholarships
Are Available

Photo of the Week

Stepping Out Walks

Commemorative Stamp for Scleroderma

Photo of the Week

Meeting between Colorado chapter leaders and Rep. Diane DeGette
Colorado Chapter leaders meet with Representative Diane DeGette. From left to right: Bryan Thomas who's mother died from scleroderma;
Dr. Ben Wood, who has scleroderma;
Rep. DeGette; Betsy McGrath-Craig, Support Group Leader; Rita Miller, Chapter President.

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!

Pfizer, Inc. Logo

2009 Communications Sponsor

Scleroderma Foundation eLetter

Friday, April 17, 2009– Issue #292

eLetter Archive

Gary Barg

Gary Barg

Edward Lilly, M.D.

Edward Lally, M.D.

Scleroderma Foundation National Conference Speaker Update

For Caregivers Only – Gary Barg

For Male Patients Only – Edward Lally, M.D.

FDA logoFDA 101: Clinical Trials and Institutional Review Boards

Clinical trials test potential treatments in human volunteers to see whether they should be approved for wider use in the general population. A treatment could be a drug, medical device, or biologic, such as a vaccine, blood product, or gene therapy.

University of Maryland - Baltimore logo2009 Hales Lung Conference Clinical and Pathophysiologic Aspects of Diffuse Parenchymal Lung Disease

Date: April 27, 2009 7:30 AM - 5:30 PM
Location: HSF II Auditorium at the
University of Maryland Baltimore

An exercise classExercising When You Have a GI Disorder

Staying physically fit is a constant struggle for Stephanie Horgan, who, like millions of Americans with gastrointestinal disorders, has to plan her diet, her exercise routines, and her entire life around her condition.

Limitations to the 6-Minute Walk Test in Interstitial Lung Disease and Pulmonary Hypertension in Scleroderma

Objective. To determine factors that influence 6-minute walk distance (6MWD) in patients with scleroderma (systemic sclerosis, SSc)-interstitial lung disease (ILD), SSc-pulmonary hypertension (PH), and idiopathic pulmonary fibrosis (IPF).

Living Separate Lives "Together"

When advanced care means Caregiver.com logoliving apart
from your spouse

Marriages that last for a lifetime are rare and precious. Older couples have experienced joys, weathered many storms and have endured the tests of time. Understandably, the impact on the marriage relationship can be overwhelming when advanced care forces one spouse to move to a care facility, causing a separation.

Is Your Skin Dry?Is Your Skin Dry?

Living in the Rockies can produce dry and itchy skin. Lotion will often do the trick. However, for some people dry skin can mean something else…Sjögren’s syndrome. Sjögren’s syndrome is an autoimmune disease in which the body’s immune system attacks the moisture-producing glands, causing inflammation and dryness of the eyes, mouth and other tissues.

Coalition for Pulmonary FibrosisCPF Launches National PSA to Educate Public on Pulmonary Fibrosis

The Coalition for Pulmonary Fibrosis (CPF) today launched a new public service announcement (PSA) to increase awareness of PF, which affects more than 128,000 Americans.

2009 National Patient Education Conference Scholarships
Are Available

Walter A. Coyle, 1922–2009

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.

Upcoming Events

April 18 (Sat.) Patient Education Forum (Long Island, N.Y.)
April 26 (Sun.) "Stepping Out to Cure Scleroderma" Walk (Houston/Conroe, Texas)
April 26 (Sun.) Scleroderma Educational Forum (New York, N.Y.)
April 26 (Sun.) Chicago Food Fight for Scleroderma (Chicago, Ill.)
May 2 and 3 (Sat. and Sun.) Oregon Chapter Plant Sale (Portland, Ore.)
Complete SF Calendar

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Phone 978-463-5843 · 800-722-HOPE (4673)

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