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eLetter #783 | October 12, 2018  

YouTube 2018 Pediatric Silver

 

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

2018 Support Group Leader Judy Laible

Cos Mallozzi (left), Scleroderma Foundation Chairman, with Judy Laible, Support Group Volunteer of the Year


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

2018_KGS2_logo_WEB
 

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

Join Inspire!
 

"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

Duke Health Logo


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.

Stepping Out Logo 2018 Be Part of the Cure
 

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!

Terry Perkins Chesapeake Virginia

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

Voice Fall 2018 Cover

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.

CLINICAL TRIAL PARTICIPATION

Scleroderma Lung Study III
 

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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Actelion JSN 2018


Boehringer Ingelheim 2018 Platinum National Sponsor


Bayer 2018

2018 Gilead

 

United Therapeutics 2018 Bronze Conference Sponsor

reata_horizontal_logo-2018-Bronze Natl


Arena Pharmaceuticals 2018 Corp Conf Sponsor

 

Corbus 2018 Corp Conf Sponsor

 

Genentech 2018 Corp Conf Sponsor

 

   

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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