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Scleroderma Foundation
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eLetter #848 | January 17, 2020  

MLK Jr


Holiday Observance

In observance of Martin Luther King, Jr. Day, the Scleroderma Foundation National Office will be closed, Monday, January 20.  

During this time, calls to (800) 722-4673 will go to voice mail.  Foundation staff will respond to voice mail and email on Tuesday, January 21.  

I HAVE A DREAM

2020 National Conference E-Alert


Conference Scholarships Applications 

On January 22, scholarship application forms will be posted to the Foundation website to apply for support to attend the National Patient Education Conference in Bellevue, Washington, July 17-19, 2020.

March 18 is the deadline for applications to be received in the Foundation's national office.  

Scholarships are for first-time attendees who have scleroderma, including children and adults, and for a parent/guardian of a minor child who has scleroderma. 

APPLICATION

Healio Rheumatology


Majority of Employed Patients with Scleroderma Report Unmet Workplace Needs

A January 14, 2020 article in Healio Rheumatology reports that a high percentage of individuals who have systemic sclerosis and who are working face challenges receiving accommodations to help them be productive in their jobs.

READ MORE

Stepping Out Logo 2018 Be Part of the Cure


Be Part of the Cure! 

You become part of the cure when you raise money at a Stepping Out to Cure Scleroderma walk or 5K run.  Stepping Out is the signature fundraising event for the Scleroderma Foundation.  Stepping Out is a time to rally family and friends, and whole communities to generate funding for the Foundation's mission:  support, education, and research. 

Visit the Foundation website to learn walks and 5K runs during 2020.

STEPPING OUT

Ticket to Work - WISE 2018


Debunking the Three Biggest Myths About Disability Benefits and Work
Webinar: January 22, 3 - 4:30 p.m. ET

Do you have questions about disability benefits and work? Choose Work will debunk myths and provide valuable information in this month’s Work Incentives Seminar Event (WISE) webinar. If you receive Social Security disability benefits (SSI or SSDI) and want to work, mark your calendars to learn more.

REGISTER

Facebook button


Facebook Fundraising

Celebrate your birthday and raise money on Facebook for the Scleroderma Foundation's mission to provide support, education, and research.

100 percent of monies donated via Facebook birthday fundraisers are passed on to the Scleroderma Foundation. There are no fees associated with Facebook fundraising.

Birthday fundraisers are the most common option, but you can create a Facebook fundraising event to benefit the Foundation for any reason you choose.

FACEBOOK FUNDRAISING

Clinical Trial Opportunities

Phase Two Study of EHP-101

Emerald Health Pharmaceuticals logoSan Diego, California-based Emerald Health Pharmaceuticals Inc., a clinical-stage biotechnology company developing medicines based on cannabinoid science, announced this week that the U.S. Food and Drug Administration (FDA) has cleared its investigational new drug application for treatment of patients with systemic sclerosis. The FDA action allows the company to commence a Phase 2 study in the United States. The study is planned to be conducted at multiple centers in the United States.  Site selection activities are currently underway. 

EMERALD PRESS RELEASE

Safety and Tolerability Study of AVID200, a Novel TGF-beta 1 & 3 Inhibitor, in Patients with Diffuse Cutaneous Systemic Sclerosis

Forbius logoThis Phase 1 trial is designed to evaluate the safety, tolerability, and preliminary efficacy of AVID200 in diffuse cutaneous systemic sclerosis (SSc) patients. Currently the Phase 1b trial is being conducted at two centers in the United States, University of Pittsburgh Medical Center (cmz15@pitt.edu) and Hospital of Special Surgery (McCullaghE@HSS.EDU), with more centers expected to be open soon.

To participate in the trial, the following criteria must be met:

  • Be at least 18 years old
  • Have SSc with a total ≥ 9 according to the American College of Rheumatology/European League Against Rheumatism (ACR/EULAR) criteria for the classification of SSc
  • Have diffuse cutaneous SSc (dcSSc) subset
  • Disease duration < 5 years since the onset of first SSc manifestations (other than Raynaud's phenomenon) at the time of enrollment
  • Have a MRSS ≥ 15, and with a score that has not decreased by > 5 points in the past 2 months (8 weeks)
  • Have a skin score ≥ 2 on at least one forearm
SPIN Eating Well with Scleroderma Focus Group 2020
 
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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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