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eLetter #843 | December 13, 2019  

Robert Spiera MD ACR Annual Meeting


Systemic Sclerosis Highlights from the 2019 ACR Annual Meeting

Medscape has published a video featuring Robert F. Spiera, M.D., Hospital for Special Surgery, a member of the Scleroderma Foundation's Medical and Scientific Advisory Board, reporting on the most interesting systemic sclerosis presentations made at the American College of Rheumatology's 2019 annual meeting in November.  

Spiera's reporting includes an analysis of the SENSCIS study that resulted in the FDA's approval of nintedanib for SSc-associated ILD.  He also reviews rituximab, a potential treatment for SSc-associated PAH.  Lastly, he talks about statins and Raynaud phenomenon.  

You must create a free account to log in to Medscape.  

WATCH VIDEO

Julian Capitol eletter


Empowering Children with Scleroderma

“It felt very empowering and it felt great to advocate for Julia and other patients with scleroderma,” said Julia’s father, Scott Ceresnak.

Now nine-years-old, Julia was diagnosed with scleroderma at age five.  Her family struggled with how much to share with her. However, over time and with Julia’s expressed need to be part of every decision, they knew keeping her 100% involved was the best way to empower their daughter. One decision was to attend Capitol Hill Day in Washington, D.C.  

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

DONATE TODAY

MUSC Argula Ward Bostwick


Therapeutic Challenges and Advances in the Management of Systemic Sclerosis-Related Pulmonary Arterial Hypertension (SSc-PAH)

A team of scientists from the Medical University of South Carolina (Rahul G. Argula, M.B.B.S, M.P.H., Celine Ward, M.D., and Carol Feghali-Bostwick, Ph.D.), have published findings in Dovepress from a study on screening and treating systemic sclerosis-related pulmonary arterial hypertension (SSc-PAH). Their abstract indicates that screening for SSc-PAH is "a critically useful strategy." While treatment options have improved (PA vasodilators), the benefit is not as great for individuals with SSc-PAH as it is for those with other forms of PAH.  The authors state, "This review attempts to chronicle and summarize the advances in our understanding of the optimal screening strategies to identify PAH in patients with SSc. The article also reviews the advances in the therapeutic and risk stratification strategies for SSc-PAH patients."

READ MORE

2018 Capitol Hill Day Todd Gilligan 2


Making Scleroderma Research More Efficient

Coordinating research related to scleroderma and other fibrotic diseases already funded by the National Institutes of Health would help make scleroderma research more efficient.

There is a bill in Congress right now that would do just that! The House version of the bill is H.R. 3446, the Senate version is S. 2477; both are titled National Commission on Scleroderma and Fibrotic Diseases Act of 2019. They are bipartisan and budget-neutral.

You can help by asking your U.S. Representative and Senators to cosponsor. Go to scleroderma.org/advocacy, print the advocacy letters, sign, scan, and email to advocacy@scleroderma.org. Or, mail to Scleroderma Foundation, ATTN: Advocacy, 300 Rosewood Drive, Suite 105, Danvers, MA  01923. Letters will be hand-delivered to Capitol Hill.

READ MORE

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Scleroderma Body Tool

Scleroderma can affect every system in the body.  Visit the "body tool" on the Scleroderma Foundation website to learn the potential effects on each different system.

  • Vascular
  • Oral
  • Hands
  • Musculoskeletal
  • Heart and Lungs
  • Kidney
  • Brain
  • Gastroinstestinal
  • Eyes
  • Skin

BODY TOOL

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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

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

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Fundraising via Facebook

You can now raise money using Facebook for the Scleroderma Foundation's mission to provide support, education, and research.  

100 percent of monies donated 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 Opportunity

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

Read more at clinicaltrials.gov and www.forbius.com.

 
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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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