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Scleroderma Foundation
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eLetter #728 | September 15, 2017  

Save the Date!

Capitol BuildingCapitol Hill Day is scheduled for April 16-18, 2018. Detailed registration and scholarship information will be announced later this fall. To receive timely scleroderma-related advocacy news, please sign up to receive action alerts. Watch for future eLetters for grassroots advocacy training opportunities that will help you be an effective advocate in your local community as well as on Capitol Hill. Save the date!

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Outstanding Chapter Awareness Award - Rocky Mountain Chapter (Colorado)

Cyndy and RobertEvery year, the Rocky Mountain Chapter of the Scleroderma Foundation tries to increase the number of health fair locations where they host scleroderma information tables, such as the American Dental Association national convention in Denver last year.  Executive Director Cyndy Besselievre equips her board and other volunteers with training and talking points so they can spread scleroderma awareness and make themselves known in the larger healthcare community. Congratulations Rocky Mountain!

Learn more about the chapter

PAH in Systemic Sclerosis - Learn More in a Special Section in the Upcoming Issue of the Scleroderma Voice

Voice Fall 2017 CoverPulmonary arterial hypertension (PAH) is a serious but rare condition that develops in approximately 8% to 12% of patients with systemic sclerosis. Learn more about risk factors, screening tests, and treatment options for PAH in a special section of the Scleroderma Voice magazine, the member magazine of the Scleroderma Foundation. The special section also includes a tear-out questionnaire to share with your physician. The next issue of the Voice is coming to your mail box in early October. If you don’t receive the Voice, click here to become a Scleroderma Foundation member or renew your annual membership.

CareZone Health Info Organizer App

CareZone logoCareZone is a smartphone app that helps you organize your healthcare information. Create lists of medications and dosages with reminders, track blood glucose, pain, and other important stats. 

Learn more

Oxygen Therapy Q&A

Oxygen TherapyThe American Thoracic Society published an informational guide to oxygen therapy that uses a series of questions and answers to help you understand the basics of this treatment. It includes a checklist and an additional resource list.

Read more

Back to School & 504 Plan Guide for a Child with Celiac Disease

504 PlanCeliac disease occurs in about four percent of people who have scleroderma. Managing it can be particularly challenging for children in school. The Celiac Disease Foundation produces a Back-to-School and 504 Plan Guide to help parents navigate the process with school officials as provided for by the Americans with Disabilities Act (ADA).

Learn more

Together, We Can Make a Difference

Dee BurlileDee Burlile may only be 5’ 2” but she packs a powerful punch. As a person with scleroderma, Dee knows well the obstacles that patients and families face. That’s why she works with the Scleroderma Foundation to advocate for change.

“The support provided by the Scleroderma Foundation has changed my life.” 
--Dee Burlile

Read more about Dee and how you can help at www.scleroderma.org/hope.
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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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