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eLetter #873 | July 10, 2020  

 SF Virtual University Summer Series Logo

 Jessica Farrell PharmD portrait 2020

Jessica Farrell, Pharm.D.

Virtual University
Patient Education Summer Series

WEBINAR: July 15, 3 - 4 p.m. Eastern Time
Scleroderma Medications: What works? How to Get it?
Jessica Farrell, Pharm.D., Albany College of Pharmacy and Health Services

The second webinar in the Scleroderma Foundation's "Virtual University" Patient Education Summer Series discusses medications. Current medications used to treat individuals with scleroderma focus on the four main features of the disease: inflammation, autoimmunity, vascular disease, and tissue fibrosis. Because there are multiple sub-types and different clinical presentations of scleroderma, medication regimens vary greatly from individual to individual. This presentation will review common medications prescribed in scleroderma and will include a description of how the medication works, common side effects, and monitoring. Also addressed are ways to find reliable information on these medications and how to obtain insurance coverage/patient assistance.

REGISTER

YouTube 2020 Virtual University July 8

Virtual University Webinar Recording

VIDEO: July 8 - Telemedicine: Strategies for a Successful Visit with JoAnna Harper, Pharm.D., R.Ph., CEO of Pain Partners, LLC

Watch a video recording of the first webinar in the Scleroderma Foundation's "Virtual University" Patient Education Summer Series

WATCH

 Washington State Proclamation 2020

Fred Granados, Washington

Idaho Proclamation 2020

Jamie McGehee, Katy Koval, Dee Burlile, Idaho

Whereas and Therefore

Official proclamations always say Whereas a lot, because that's the formal way of stating the reasons supporting the proclamation. The really important part is the Therefore that comes at the end.

In celebration of World Scleroderma Day on June 29, the Northwest Chapter joined Heartland, Michigan, Ohio, Rocky Mountain, and Texas Bluebonnet chapters by securing proclamations from Governor Jay Inslee of Washington and Governor Brad Little of Idaho establishing June 29 as Scleroderma Awareness Day in their respective states.

Congratulations, Northwest Chapter!

ADVOCACY

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 Virtual Stepping Out eLetter

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Keeping Our Promise

The Scleroderma Foundation made a promise 22 years ago to everyone affected by scleroderma.  That promise is our mission to provide support, education, and research.  In the words of CEO Robert Riggs, "As scary as it all may be, and as difficult and as sad as this is, this is not a time to step down. This is a time to step up, to dig deep, to get creative, and engage people in new ways to keep our community strong."

Going for a walk in a crowd is not safe right now. So the Foundation got creative and pivoted to virtual fundraising events. Fundraise, take a victory lap, and post a selfie on social media with the hashtag #VirtualSteppingOut. And remember, donations are accepted for at least 30 days after the event and longer in many cases.

July & August Fundraising Events:

STEPPING OUT

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COVID‑19 Information & Recommendations

From the Scleroderma Foundation's Medical & Scientific Advisory Board Leadership Committee

The Foundation's Medical & Scientific Advisory Board (MSAB) Leadership Committee fully endorses recent recommendation by the American College of Rheumatology (ACR) in their “COVID-19 Clinical Guidance for Patients with Rheumatic Diseases” draft summary, which states that individuals who have rheumatic diseases, including scleroderma, who test positive for COVID-19 should temporarily discontinue sulfasalazine, methotrexate, leflunomide, immunosuppressants, non-IL-6 biologics and JAK inhibitors. The ACR COVID-19 Clinical Guidance Task Force also recommends that those who have confirmed COVID-19 may continue with anti-malarial therapies—namely hydroxychloroquine and chloroquine—and, in select circumstances, IL-6 inhibitors.

Information and recommendations from the Foundation's MSAB regarding COVID-19 and scleroderma are posted at www.scleroderma.org/covid19. This "living document" was most recently updated on May 1. Please check it from time to time for additional updates.

COVID‑19

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Birthday Giving

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

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

Birthday fundraisers are the most common, but you can create a Facebook fundraiser 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

Several lines of evidence place TGF-β, a potent pro-fibrotic cytokine, at the center of the pathogenesis of systemic sclerosis (SSc). AVID200 is a novel inhibitor of TGF-β ligands.

AVID200-01 (NCT03831438)is a Phase 1 trial designed to evaluate the safety, tolerability, and preliminary efficacy of AVID200 in diffuse cutaneous systemic sclerosis (dcSSc) patients. Currently the trial is being conducted at four centers in the United States: University of Pittsburgh Medical Center, Hospital for Special Surgery, UCLA, and University of Pennsylvania, with more centers expected to be open soon.

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

  • Be at least 18 years old
  • Be classified as having 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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