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eLetter #783 | October 12, 2018 |
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Conference Video: "Your Child Has Been Diagnosed With Scleroderma. Now What?"
At the 2018 National Patient Education Conference we filmed Kate Silver, M.D., M.S.C.R., Medical University of South Carolina, giving a presentation on pediatric scleroderma to help parents and caregivers be the best advocates for their children. She focused on distinguishing between the two major types of pediatric scleroderma: localized scleroderma (morphea) vs. systemic scleroderma. She discussed each type in detail with a focus on tests and how to interpret results. Dr. Silver also reviewed different treatment options.
watch this video & others from the 2018 conference
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Cos Mallozzi (left), Scleroderma Foundation Chairman, with Judy Laible, Support Group Volunteer of the Year
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Support Group Volunteer of the Year
The 2018 Support Group Volunteer of the Year Award recognized Judy Laible of the Rocky Mountain Chapter, who has led the Northern Colorado Support Group with passion for five years. An early challenge was finding a permanent home for a struggling group with waning attendance. Determined to build a strong support group, Judy contacted each chapter member in her area. Five years later, she and her co-leaders continue that strategy to connect and stay connected. Support groups members are asked for input on speakers and topics, and they check in on each other. Congratulations Judy!
scleroderma.org/conference
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Kids Get Scleroderma Too
October 26 & 27, Aurora, Colorado
The Rocky Mountain and Tri-State Chapters are excited to co-host “Kids Get Scleroderma Too” on October 26 and 27, 2018, at Children’s Hospital Colorado in Aurora, Colorado. This event is for youth and teens who have scleroderma, and their parents and siblings. Juvenile scleroderma experts from around the country will lead educational sessions and group discussions. Friday night features a fun Halloween costume party for the whole family! Scholarships are available.
register today: 2018KGS2.sclerodermatristate.org
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PHA on the Road
October 27, Milwaukee, Wisconsin
PHA on the Road is a free education and networking event for individuals with pulmonary hypertension (PH) and their families. PHA will be “on the road” in Milwaukee, Wisconsin, Saturday, October 27, to make connections with families living with PH and to provide education, support, and networking opportunities – all free of charge.
Milwaukee, Wisconsin, October 27
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"Who Here Has Diffuse?"
To answer that question, join the online scleroderma support group at Inspire.com, which is managed in cooperation with the Scleroderma Foundation. The groupo has more than 40,000 members who are all affected by scleroderma in one way or another. And, they're always happy to share their experience with you.
Join the conversation at Inspire.com
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Research & Treatment Centers
Duke Scleroderma Research Center Clinic
The Scleroderma Foundation has formal affiliations with nearly 50 scleroderma research and treatment centers in the U.S. To be designated as a center, a clinic must:
- Demonstrate expertise in the care of patients with scleroderma.
- Conduct scleroderma research (clinical and/or observational and/or laboratory-based).
- Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public.
In the Durham, North Carolina area go to the Duke Scleroderma Research Center Clinic.
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Step Out to Cure Scleroderma in Oklahoma
If you live in the Tulsa, Oklahoma area, rally your family and friends to raise money to help people with scleroderma through support, education, and research. Join the Stepping Out to Cure Scleroderma walk Saturday, October 13 in Broken Arrow.
10/13 - Broken Arrow, OK
sign up to walk today!
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Reach for the Cure
“Scleroderma forced me into early retirement and disability…I loved my job as an investment manager for a utility.”
“You have two choices; you can dwell on it or do something about it. And I chose the second.”
Terry Perkins, Chesapeake, Virginia; Dx 2003
give generously to reach for the cure
watch the reach for the cure video
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Winter Voice Published Online Only
If you are a subscriber to Scleroderma Voice, you should note that the winter edition (November) will be published online only. By publishing one issue online, the Foundation reduces production costs and can use that savings toward other parts of our mission.
Subscribers (Foundation members) will receive an email with a link to read the magazine online.
If you are a paid subscriber, please provide your current email address to ensure that you receive access to the winter Voice.
Contact webmaster@scleroderma.org, or call (800) 722-4673.
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CLINICAL TRIAL PARTICIPATION
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Scleroderma Lung Study III
Combining the Anti-Fibrotic Effects of Pirfenidone (PFD) with Mycophenolate (MMF) for Treating Scleroderma-Related Interstitial Lung Disease
Scleroderma Lung Study III (SLS III) is focused on the treatment of pulmonary fibrosis and is being conducted at 17 different centers throughout United States. To participate, patients must meet the following criteria:
- Be at least 18 years old
- Have systemic scleroderma such as limited (previously called CREST syndrome) or diffuse scleroderma
- Disease duration within 7 years from first symptom (other than Raynaud’s phenomenon), such as puffy fingers or skin thickening
- Have shortness of breath
- Documented lung or pulmonary fibrosis
- Not have other serious illnesses
- Meet other eligibility criteria that you study doctor will explain to you as part of the evaluation process.
read more on ClinicalTrials.gov
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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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