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Scleroderma Foundation
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eLetter #894 | December 4, 2020  

Tracy Frech MD MS Headshot
Tracy Frech, M.D.
Trophy Star

Jet Ski for Julia Tom Cronin
Tom Cronin
Jet Ski for Julia Ceresnak
Julia Ceresnak

Recognition for Outstanding Service

Every year at the National Patient Education Conference, the Scleroderma Foundation takes time to recognize individuals and chapters for their outstanding service during the preceding year. Unfortunately, the pandemic removed that opportunity to thank awardees in person, and so we present to you here select 2020 National Awards.

Doctor of the Year
The 2020 Doctor of the Year Award was presented to Tracy Frech, M.D., in recognition of her outstanding work as a physician and caregiver to the scleroderma community. Dr. Frech is associate professor of medicine and Director of the Systemic Sclerosis Clinic at the University of Utah Hospital in Salt Lake City and Director of Clinical Trials for the Division of Rheumatology. Dr. Frech is an active member of our Medical and Scientific Advisory Board and is a tireless volunteer advisor and teacher, giving frequent lectures at education events hosted by the Foundation and its chapters throughout the country. The award also recognizes her deep commitment to helping those living with scleroderma to become stronger advocates for themselves in the ever-changing healthcare environment. Congratulations, Dr. Tracy Frech, for being recognized as the 2020 “Doctor of the Year.”

Fundraiser of the Year
The 2020 Fundraiser of the Year is Tom Cronin of Shelter Island, NY, for his extraordinary fundraising campaign, "Jet Ski for Julia," to raise funds in honor of his great niece, Julia Ceresnak, who has systemic scleroderma. Julia, who is nine now, was diagnosed at age five. When Tom learned of her diagnosis, he just knew he had to do something to make a difference. What Tom did was big! He and his buddy, Jason (known as Tobey), meticulously planned Jet Ski for Julia, a jet ski trip worthy of a Guinness World Record from Shelter Island (on Long Island) to Key West and back. The trip had tremendous challenges and risks, both logistical and physical, but Tom and Tobey were up to the challenge and Julia kept them inspired. Tom's fundraising exceeded a remarkable $35,000 and his efforts spread great awareness. Thank you and congratulations, Tom Cronin, Tobey, and Julia!

AWARDS

Giving Tuesday Heart Globe

Thank You!

The Scleroderma Foundation is deeply grateful to all who celebrated Giving Tuesday on December 1 by making a generous donation to advance our mission of support, education, and research.

If you missed the date, no worries, it's not too late to donate!

GIVING TUESDAY

emotional help

University of Michigan Ginsberg Center

What are the Barriers that Confront You in Accessing Mental Health Care?

The Scleroderma Foundation is conducting a survey to help answer the following questions:

  • What are barriers that people with scleroderma face in accessing mental health services?
  • What mental-health related services are wanted that the Scleroderma Foundation can provide?

Your responses will be used to help guide the Scleroderma Foundation in creating mental health resources, programs, and services for those persons living with scleroderma in the United States. We ask that only persons living with scleroderma complete this survey and only do so once so we can obtain accurate data.

The survey should only take seven minutes and your responses are completely anonymous. Unless you choose to enter your name and email address, only your responses, the date, and time will be collected. The survey will close on December 31, 2020. Questions marked with an asterisk (*) are required. Only individuals over the age of 18 may take this survey. If you have any questions about the survey, please contact Laura Dyas: LDyas@scleroderma.org.

SURVEY

Beyond Breathless Boehringer Ingelheim

Queen Latifah & Bernie Williams Appear in "Beyond Breathless" A&E Documentary

Boehringer Ingelheim announced the December 5, 2020 premiere of "Beyond Breathless," a documentary featuring award-winning actress, musician, and TV producer Queen Latifah and New York Yankees legend Bernie Williams to spotlight the journey of those who are impacted by ILD (interstitial lung disease) through the real experiences of people living with rare lung diseases, their loved ones, and healthcare professionals. Both Queen Latifah and Bernie Williams lost a parent to ILD. 

The documentary premieres on A&E, December 5, 2020, at 12 p.m. Eastern Time.

PRESS RELEASE

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MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

From the Scleroderma Foundation's Medical & Scientific Advisory Board Leadership Committee
Reviewed July 1

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 reviewed on July 1. Please check it from time to time for additional updates.

COVID‑19

 Clinical Trial News

Acceleron Receives FDA Orphan Drug Designation for ACE-1334 for the Treatment of Systemic Sclerosis

Acceleron Pharma Inc., a biopharmaceutical company, announced in a December 1, 2020, press release that the U.S. Food and Drug Administration (FDA) granted Orphan Drug designation to ACE-1334 for the treatment of patients with systemic sclerosis. The company intends to initiate a Phase 1b/Phase 2 trial in patients with systemic sclerosis-associated interstitial lung disease (SSc-ILD) in 2021. ACE-1334 has shown robust anti-fibrotic activity in multiple preclinical models of fibrosis. ACE-1334 recently completed an ascending-dose Phase 1 clinical trial in healthy volunteers. The FDA has granted Fast Track designation to ACE-1334 in patients with systemic sclerosis-associated interstitial lung disease (SSc-ILD) as well as Orphan Drug designation for the treatment of systemic sclerosis.

PRESS RELEASE

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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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