Capitol 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!
Outstanding Chapter Awareness Award - Rocky Mountain Chapter (Colorado)
Every 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!
PAH in Systemic Sclerosis - Learn More in a Special Section in the Upcoming Issue of the Scleroderma Voice
Pulmonary 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
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 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.
The 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.
Back to School & 504 Plan Guide for a Child with Celiac Disease
Celiac 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).
Dee 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
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.
The Scleroderma Foundation is a qualified national nonprofit operating under 501(c)(3) status. The foundation’s federal tax identification number is 52-1375827. Our primary goal is to raise funds for our three-fold mission of support, education and research. The foundation has 20 active chapters and 160 support groups across the country.