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Scleroderma Foundation
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eLetter #849 | January 24, 2020  

Michigan 2020 Webinar January Disability


Systemic Sclerosis:
Taking the Mystery Out of Disability

Social security has its own rules, courts, and judges. Tune in to learn from Gary W. Bimberg, Esq., a managing partner at Levine Benjamin Law Firm. Mr. Bimberg will discuss the practices and processes of social security disability law.

Produced by the Michigan Chapter

VIDEO

Ohio Sunday Sit Down


Sunday Sitdowns

Join the Ohio Chapter for "Sunday Sitdowns" January 26 and the last Sunday in every month at 1 p.m. Eastern Time via Facebook Live.  

Talking isn't a cure, but it sure helps.  Given the open nature of Facebook, do not share private, personal information during this conversation.  However, Sunday Sitdowns are a great time to connect with others who live with the challenges cause by scleroderma.  

FACEBOOK LIVE

2020 National Conference E-Alert


Conference Scholarships Applications 

Scholarship application forms are available on the National Conference website for finanical assistance 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. Detailed instructions are included on the form. 

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. 

SCHOLARSHIP

Education Icon Portrait


Scleroderma Education

Throughout the year, every chapter in the Scleroderma Foundation hosts at least one education program in their chapter area. 

Programs often include scleroderma medical experts who discuss different topics of interest to individuals who have the disease, or are a family member. 

Not everyone can attend the National Patient Education Conference, which makes a local learning opportunity a welcome occasion. 

Check the Scleroderma Foundation calendar to find education programs in your area. 

Generally, programs take place later in the year; however, the Delaware Valley Chapter is hosting a program March 28 in Philadelphia.   

CALENDAR

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

Clinical Trial Opportunities

Cumberland Pharmaceuticals ifetroban trial

Aiming to Prevent Cardiomyopathy

If you are an adult with systemic sclerosis, you may be eligible to take part in a research study sponsored by Cumberland Pharmaceuticals aimed at evaluating an oral study drug, called ifetroban, to determine if symptoms improve. Eligible subjects will be reimbursed for their time and travel. Trial Locations:

  • Baltimore, Maryland
  • Boston, Massachusetts
  • Charleston, South Carolina
  • Dallas, Texas
  • Los Angeles, California
  • New York, New York
  • Seattle, Washington

To learn more about ifetroban for systemic sclerosis (SSc), please call (615) 627-4121 or email bkaelin@cumberlandpharma.com.

 

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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