Scleroderma Foundation

In This Issue

REGISTER FOR THE NATIONAL CONFERENCE NOW!

Linda Lee Wells Memorial Education Workshops – Speaker Update

5 Rules for Living with Chronic Illness and Depression

Bosentan (Tracleer®) Receives Positive CHMP Opinion for Pediatric Formulation

Distinct Autoimmune Syndromes in Morphea

What Is Bursitis? What Causes Bursitis?

H.R. 2408 – 20 Cosponsors Now Signed on!

Upcoming Events

National Conference Hotel Update

Photo of the Week

Stepping Out Walks

Photo of the Week

Barb Heenan, Omaha Nebraska Support Group Leader (middle) and friends spreading awareness at the recent Royals game.
Barb Heenan, Omaha Nebraska Support Group Leader (middle) and friends spreading awareness at the recent Royals game.

National Conference Hotel Rate Extended to June 29!

more.

Stepping Out to Cure Scleroderma Walks Gearing Up

Find a walk near you!

Scleroderma Bill H.R. 2408Update!

Thomas.gov lists 14 co-sponsors, however, we just got word that six more representatives have signed on!

Pfizer, Inc. Logo

2009 Communications Sponsor

Scleroderma Foundation eLetter

Friday, June 19, 2009– Issue #301

eLetter Archive

EARLY BIRD REGISTRATION FOR THE NATIONAL PATIENT EDUCATION CONFERENCE IS JUNE 26—YOU ONLY HAVE ONE WEEK LEFT!

Register TODAY for the National Patient Education Conference and save $50 by clicking here.

Maribeth Duncan

Maribeth Duncan, MSN, APRN-BC

Richard Brasington, M.D.

Richard Brasington, M.D.

Linda Lee Wells Memorial Education Workshops – Speaker Update

"Clinical Trials: Are They Right for You?" by Richard Brasington, M.D. and "Living with PH," by Maribeth Duncan, MSN, APRN-BC

StethoscopeClinical Trials: What are States Doing? February 2009 Update

What is a Clinical Trial?

A clinical trial is a research study on human patients to test the safety and effectiveness of new treatments.  These trials offer patients access to new and potentially life saving drugs and cures.

Dr. Elvira Aletta

Dr. Elvira Aletta

5 Rules for Living with Chronic Illness and Depression: An Interview with Elvira Aletta

Question: I know that you have dealt with chronic illness personally and professionally, and this is an area of specialty for you. Do you have five good rules for living with both chronic illness and depression?

Bosentan (Tracleer®) Receives Positive CHMP Opinion for Pediatric Formulation

ALLSCHWIL, SWITZERLAND - Actelion Ltd (SIX: ATLN) announced today that the Committee for Medicinal Products for Human Use (CHMP), the scientific committee of the European Medicines Agency (EMEA), issued a positive opinion for the pediatric formulation of bosentan (Tracleer®) for the treatment of pulmonary arterial hypertension (PAH).

Heidi Jacobe, M.D.

Heidi Jacob, M.D.

Distinct Autoimmune Syndromes in Morphea

A Review of 245 Adult and Pediatric Cases

Justin J. Leitenberger, BS; Rachael L. Cayce, BS; Robert W. Haley, MD; Beverley Adams-Huet, MS; Paul R. Bergstresser, MD; Heidi T. Jacobe, MD

Objective  To determine the prevalence of extracutaneous manifestations and autoimmunity in adult and pediatric patients with morphea.

What Is Bursitis? What Causes Bursitis?

Bursitis happens when the bursa is inflamed. The burse acts as a cushion between bones, tendons, joints and muscles - bursae are fluid-filled sacs (the plural of bursa is bursae). People with bursitis will feel pain at the site of inflammation. The medical word "bursa" comes from the Latin bursa, meaning a purse, which is what a bursa resembles. According to Medilexicon's medical dictionary, bursitis is "inflammation of the bursa."

Upcoming Events

June 20 (Sat.) "Stepping Out to Cure Scleroderma" Walk (Clemson, S.C.)
June 20 (Sat.) "Stepping Out to Cure Scleroderma" Walk (Poughkeepsie, N.Y.)
June 27 (Sat.) "Stepping Out to Cure Scleroderma" Walk (Syracuse, Utah)
June 27 (Sat.) "Stepping Out to Cure Scleroderma" Walk (Dallas, Texas)
June 28 (Sun.) "Stepping Out to Cure Scleroderma" Walk (Plymouth, Mass.)
June 28 (Sun.) "Stepping Out to Cure Scleroderma" Walk (Highland Park, Ill.)
June 28 (Sun.) "Stepping Out to Cure Scleroderma" Walk (Stamford, Conn.)
June 28 (Sun.) "Stepping Out to Cure Scleroderma" Walk (Willoughby, Ohio)
July 11 (Sun.) "Stepping Out to Cure Scleroderma" Walk (Portland, Ore.)
July 11 (Sun.) "Stepping Out to Cure Scleroderma" Walk (San Diego, Calif.)
July 17–19 (Fri.–Sun.) Scleroderma Foundation National Patient Education Conference (St. Louis, Mo.)
Complete SF Calendar

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

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