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eLetter #842 | December 6, 2019  

Julia Football eLetter


Elevating Her Voice

Julia Ceresnak is a mighty third-grader who sees life like many her age, full of endless possibilities.

My dreams are to be a high school football player and to play a lot of sports. I want to be a vet when I grow up. I also want to study history.

Julia doesn’t see many obstacles getting in her way, and at age nine she shouldn’t have to. However, being diagnosed with scleroderma at an early age does add one more dream to her list:

My hope for the future is that they will find a cure for scleroderma.

Together, we can help children like Julia focus on their dreams rather than their disease.

DONATE TODAY

Advocacy Capitol Hill 2018 Markoff


Citizenship Doesn't End With Voting

The Scleroderma Foundation makes it easy to be a good citizen, we wrote a letter for you ;-).  Find it at scleroderma.org/advocacy.  Print it, sign it, scan it, and email it back to us. And, we hand deliver it.

The letter asks your U.S. Representative and Senators to cosponsor H.R. 3446 and S. 2477, which are identical bills, titled National Commission on Scleroderma and Fibrotic Diseases Act of 2019. They are bipartisan and budget-neutral and are designed to improve coordination of research related to scleroderma and other fibrotic diseases that is already funded by the National Institutes of Health.

Email the signed letters to advocacy@scleroderma.org. Or, use the U.S. Mail: Scleroderma Foundation, ATTN: Advocacy, 300 Rosewood Drive, Suite 105, Danvers, MA  01923.

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Designated Scleroderma Research & Treatment Center SF Lo


Scleroderma Research & Treatment Centers

To ensure that individuals who have scleroderma are provided with knowledgeable resources about diagnosis, care, and research, the Scleroderma Foundation's Medical & Scientific Advisory Board designates specific institutions as "Scleroderma Research and Treatment Centers" if they meet the following criteria:

  • 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.

FIND A CENTER

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Open Enrollment Ends December 15

Don't wait! Open enrollment on HealthCare.gov ends December 15. Log in TODAY, fill out an application, compare plans and premiums, and enroll.

Enter your zip code to determine whether your state has its own healthcare connector or if you must use HealthCare.gov.

2020 PLANS & PRICES

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10 Myths About Raynaud's Phenomenon
WEBINAR: Tue., Dec. 10, 1:30 - 2:30 p.m. Eastern

Get the facts for a warmer, more comfortable life. NeedyMeds' partner, the Raynaud's Association, will offer resources for support and education to help those living with Raynaud's to lead a fuller life.

REGISTER

Ticket to Work - WISE 2018


Career Preparation for College Students with Disabilities
WISE WEBINAR: Wed., Dec. 18, 3 - 4:30 p.m. Eastern

Did you know Ticket to Work offers free services and supports to help college students with disabilities achieve their career goals? If you receive Social Security disability benefits or SSI and are preparing to work, mark your calendars for December 18, at 3 p.m. ET, and join ChooseWork for the next WISE webinar to learn more!

REGISTER

TOSS scleroderma self management


Taking Charge of Systemic Sclerosis (TOSS)

Often, persons with scleroderma do not know other people with the disease. They might live in a state where there is no chapter of the Scleroderma Foundation, or their community might not have a support group. "Taking Charge of Systemic Sclerosis (TOSS) is a web-based self-management program designed to help you learn about scleroderma, to manage your symptoms, and to learn strategies to help you advocate for yourself.

Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life. Register today to gain skills and confidence to manage systemic sclerosis (SSc) symptoms and to develop strategies to advocate for yourself. Peer mentors will empower you to take control of your life and your healthcare.

LEARN MORE

Clinical Trial Opportunity

Belimumab and Rituximab Combination Therapy

Overview
  • This is a randomized, placebo-controlled trial, where patients will be randomized in a 2-to-1 fashion to treatment with rituximab 1000 mg every other week for two infusions followed by weekly belimumab (200 mg subcutaneously) or placebo infusions followed by weekly subcutaneous placebo injections
  • All patients will receive background mycophenolate mofetil
  • Study duration: 15 months
Inclusion Criteria
  • Age: 18-80 years
  • Classification of systemic sclerosis (SSc), as defined using the 2013 American College of Rheumatology/European Union League Against Rheumatism classification of SSc
  • Diffuse skin involvement
  • Disease duration of less than or equal to 3 years as defined by the date of onset of the first non-Raynaud’s symptom
  • A modified Rodnan Skin Score (mRSS) of > 14
HSS Hospital for Special Surgery logoExclusion Criteria
  • Prior use of B-cell depleting therapies
  • FVC < 45%
  • DLCO < 30%

CONTACT

Hospital for Special Surgery:

Liza Morales, Research Coordinator
(212) 774-2561, moralesli@hss.edu

Beemnet Amdemicael, Research Assistant
(212) 774-2048, amdemicaelb@hss.edu

 
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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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