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Scleroderma Foundation
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eLetter #718 | June 30, 2017  

VIDEO: View Educational Programming about Scleroderma

Lung Week at ATS
The American Thoracic Society (ATS) and the Scleroderma Foundation presented a free live patient education webinar about scleroderma on June 10. This webinar was presented as part of the "Scleroderma Week at the ATS" program, an educational activity designed to foster communication between clinicians, researchers, patients and patient advocates about lung and airway disorders. In these video sessions, learn about the different types of scleroderma, the impact of GI function and nutrition, and the oral manifestations of scleroderma.

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StethoscopeWhat is a Rheumatologist?

A rheumatologist is a specialty physician who treats musculoskeletal diseases and autoimmune conditions, like rheumatoid arthritis, gout, lupus and scleroderma. If your primary care physician suspects an underlying rheumatic condition, you may be referred to a rheumatologist for further examination and testing.

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We're Extending the World Scleroderma Day Virtual Walk

Virtual WalkWorld Scleroderma Day was June 29 but we're extending our "World Scleroderma Day Virtual Walk" through the rest of the summer. Last year, our event raised raised nearly $15,000 to support the Foundation's programs and services. Now's your chance to form a "virtual" fundraising team to help people living with this disease.

Any participant who raises $75 or more by Sept. 1 will receive a special t-shirt as a thank you for your participation. This is a great way to take part in the Foundation's signature "Stepping Out to Cure Scleroderma" events if you are physically unable to attend one of our walks or don't have a walk near you.

Register now

Need Some Fundraising Tips?

Not sure how to get started with fundraising? Here are 5 easy ways to quickly get to $500!

  1. Show your dedication by donating $25 to your own fundraising effort (That's $25)
  2. Call six family members and ask each to donate $25 to support you (Another $150)
  3. Send an email to five friends asking for a $10 donation each! (That’s another $50)
  4. Write a social media post and tag 10 friends asking them to give up their daily coffee for a week and instead donate $25 to your fundraising effort. (There's another $250 to beating scleroderma)
  5. Ask your employer to match that $25 donation you made to yourself earlier in the week. (That's another $25)

Research Study Updates

Contribute to Scleroderma Research from Home

HouseWould you like to contribute to scleroderma/systemic sclerosis research from the comfort of your home? If you have been diagnosed, researchers need your help! Donating is easy and fast, and you will receive $50 compensation for your time.

You may qualify to participate if you:

  • Are between the ages of 18 and 65
  • Have been diagnosed with scleroderma or systemic sclerosis

We can’t advance research without the help of people like you! Please visit us here to sign up and see if you qualify to participate, or call (818) 804-2463 to speak with a Research Coordinator today.

Foods Choices and Scleroderma

breakfastMany people living with scleroderma perceive that what they eat influences their symptoms related to scleroderma. This study is inspired by people attending the Scleroderma Foundation Patient Conference who expressed a desire for research such as this to be conducted.

If you are a person with scleroderma and you experience related gastrointestinal symptoms such as bloating, cramping, nausea, vomiting, regurgitation, diarrhea, constipation etc., you may be interested in participating in this research study.

This is a national study run by the New Orleans Scleroderma Patient Care and Research Center (Lesley Ann Saketkoo, M.D., M.P.H., Tulane University Lung Center) using telephone counseling and online questionnaires to assess the impact of various diets that might impact symptoms in scleroderma. 

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July 4July 4 Holiday Office Hours

Please note: Our National Office will be closed on Tuesday, July 4, in observance of Independence Day. We will re-open for normal business hours at 8:30 a.m. Eastern Wednesday, July 5.

Have a safe holiday weekend with your family and friends!

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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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