Scleroderma Foundation eLetter
eLetter #393
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Greetings!  

New Chapter Serves Scleroderma
Patients and Families in Georgia


Georgia quarterThe Scleroderma Foundation has chartered a new chapter to cover the state of Georgia. The formation of this chapter will connect scleroderma patients in the southern U.S. with the essential resources and support they need.

 

The Georgia Chapter is the 23rd chapter for the Foundation and will have headquarters in suburban Atlanta. It is the result of one family's determination to help people living with scleroderma as well as to educate the public about the disease after the death of one of its members. In 2009, the Basile family lost a sister and daughter, Kathleen Basile.

 

"Our goal is to help people with scleroderma and their families. We want to make Kathleen's wish of finding a cure a reality so no one else has to go through what she did," said Doreen Towhey, Kathleen's sister. "There are so many people in Georgia that need a support system. It isn't just the patient that battles the disease. The entire family needs support to cope and manage scleroderma. Our mission as a chapter is to raise funds for research for the cure. But, as we wait for that to happen, we want to create new support groups throughout Georgia." Doreen along with her sister, Peggy Levengood, will serve as chapter co-president.

 

With more than 2,300 members on the National Foundation's database in Georgia, the state currently only has one support group that serves the Atlanta/Duluth area. We hope to have a second support group in Newnan form later this year.

 

The chapter's website will be available Monday, April 4. For more information about the Scleroderma Foundation's Georgia Chapter or to join, call Peggy Levengood at (770) 925-7037.  

Sign Petition Today: Help Save NIH Funding 

Researcher- GenericThe Ad-Hoc Group for Medical Research has started a petition to prevent cutting lifesaving funding for National Institutes of Health-supported medical research that will be sent to members of Congress. NIH works with more than 3,000 medical schools, teaching hospitals, universities and research institutions across the U.S. to help improve the health of people all around the world.

Cutting NIH funding will immediately halt promising research on new approaches to diagnose, prevent and treat diseases like scleroderma while simultaneously eliminating jobs across the country as global competitors continue to invest aggressively in science to strengthen their own economies.

Please consider joining more than 7,800 other patients, health care providers and supporters of medical research to save NIH funding.

Sign the petition today!   

What Works for Raynaud's? 

Internal Medicine News logoUntil further testing confirms or disproves the promise of an oral formulation of treprostinil that is making its way through the developmental pipeline for management of Raynaud's phenomenon and the ischemic finger, rheumatologists will have to continue to make do with modestly efficacious agents that all are best employed in conjunction with background therapy using a long-acting calcium channel blocker titrated to the maximum tolerated dose.

Read more about this news from Internal Medicine News.

Treating Chronic Pain & Managing the Bills 

New York Times logoGiven the prevalence of chronic pain - often defined as recurrent pain that lasts more than three to six months - you might expect that by now medical science would have figured out how to alleviate it and that health insurers would routinely cover its treatment.

 

If only it were that simple. Pain is a sneaky opponent. Invisible, it cannot be detected with a blood test or a scan; sometimes it has no identifiable cause. Pain is perception, and what one person considers intolerable may be only moderately uncomfortable to another.

 

This makes treatment challenging. And insurers often do not make it any easier.

 

Read more about managing your finances with a chronic illness from the New York Times.

Lowering the Salt in Your Diet  

WebMD LogoEveryone needs some salt to function. Also known as sodium chloride, salt helps maintain the body's balance of fluids. Salt also functions in many foods as a preservative, by helping to prevent spoilage and keeping certain foods safe to eat. But nearly all Americans consume more salt than they need, according to the Dietary Guidelines for Americans.

 

Learn more about lowering your salt intake from WebMD. 

[Video] Importance of Research for Kids

Children and Clinical Studies LogoThe simple truth is...children are not little adults. But without research in children themselves, we have no choice but to treat them that way.

 

Doctors and nurses often give medicines to children even though they have not been studied and approved by the Food and Drug Administration (FDA) for use in children. This is known as "off-label" use. Most of the time, this works well but when the adult dose is adjusted to the weight of a child, there is a chance that the dose used could be ineffective or even harmful.

 

View the video about how research for kids doesn't have to be a hand-me-down approach. 

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