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Scleroderma Foundation
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eLetter #834 | October 11, 2019  

 

Columbus Day


Columbus Day

In observance of Columbus Day, the Scleroderma Foundation National Office will be closed Monday, October 14. 

Calls to (800) 722-4673 and emails to SFinfo@scleroderma.org will be answered on Tuesday, October 15.

SCLERODERMA.ORG

US House Interior

US Senate Interior


Keep the Momentum Going

Thank you to all who mailed in signed letters to encourage their U.S. Representative and Senators to co-sponsor H.R. 3446 and S. 2477, which are identical bills, titled National Commission on Scleroderma and Fibrotic Diseases Act of 2019.

If you have not yet acted, please do so today. There is one letter for the House and one for the Senate.  The more cosponsors each bill has, the faster it will move through committee and onto the floor for a vote.

The bills are bipartisan and budget-neutral, and are designed to improve coordination of research related to scleroderma and other fibrotic diseases already funded by the National Institutes of Health.

Download and sign both letters today to ask your U.S. Senators and Representative to cosponsor. For full impact, the Foundation will hand deliver the letters, so please mail them to the Scleroderma Foundation, ATTN: Advocacy, 300 Rosewood Drive, Suite 105, Danvers, MA  01923.

HR3446 LETTER - S2477 LETTER

YouTube 2019 Furst Research

Daniel Furst, M.D.


New and Exciting News from the World of Scleroderma Research
2019 National Conference Video

Daniel Furst, M.D., University of California, Los Angeles, presented "New & Exciting News from the World of Scleroderma Research" at the Scleroderma Foundation's 2019 National Conference in Chicago, Illinois.  His presentation, along with 13 others, was videotaped and is now posted on the Foundation's YouTube channel.

WATCH VIDEO

Rachel Ho

Rachel Ho with her Shih Tzu, Simba


Rachel Ho: Outstanding Patient Support

The 2019 Outstanding Patient Support award was presented to Rachel Ho. Rachel is a long-time support group leader who does an excellent job facilitating meaningful patient education opportunities. As a resident of Northern California, Rachel has graciously and frequently represented the Scleroderma Foundation to accept philanthropic gifts from the sisters of Beta Sigma Phi. Congratulations, Rachel!

AWARDS

Education Icon Portrait


Scleroderma Education Programs

Learn Local. Each chapter in the Scleroderma Foundation offers at least one scleroderma education program every year. There are seven now through November in seven different states.

CALENDAR

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Health Advocacy Summit Group


Health Advocacy Summit

Health Advocacy Summit facilitates day-long, no-cost advocacy events for young adults with invisible chronic and rare diseases. The events bring together speakers on storytelling, navigating school and workplace, overcoming emotional barriers, health policy, and more.

Please visit www.healthadvocacysummit.org to register and follow us on Instagram and Facebook @healthadvocacysummit and Twitter @HA_Summit to keep updated! Please email Sneha at sneha@healthadvocacysummit.org with any questions.

Ticket to Work - WISE 2018


Putting it Together: Choosing a Service Provider That's Right for You"

WEBINAR: October 23, 3 - 4:30 p.m. Eastern Time

Are you thinking about working or are you already looking for work? Discover how a Ticket to Work service provider can help! This month, Choose Work’s WISE webinar will share information about the FREE services and supports that are available for eligible people with disabilities. Get answers to questions about finding the right service provider to help you reach your work goals.

REGISTER TODAY

Dr. Torok

Kathryn Torok, M.D.


Managing the Needs of a Pediatric Scleroderma Patient

WEBINAR: October 24, 2019, 7 - 8:30 p.m. Eastern

Kathryn Torok, M.D., director of the Pediatric Scleroderma Clinic at Children's Hospital of Pittsburgh, works daily with children who have scleroderma. In this October webinar, she’ll share information about managing the needs of pediatric scleroderma patients. When you sign up, you’ll receive a confirmation email with additional instructions to join the webinar on event day.

REGISTER TODAY

Raynaud Quiz


October is Raynaud's Awareness Month

An estimated 5 to 10 percent of the population has Raynaud’s, and nine out of ten are female. How can you tell if you have Raynaud Phenomenon?  Take this quiz and then talk to your doctor.  

TAKE QUIZ

September Campaign - lightbox


I Can See My Daughter Living a Quality Life

When Isabella was diagnosed with scleroderma last year at the age of 13, she and her mother, Genieva, struggled to find reliable information. They also felt alone, because scleroderma is a rare disease, until they found the Scleroderma Foundation. They connected with webinars and learned a lot through the Foundation’s website, and they discovered the Foundation’s National Patient Education Conference. A scholarship funded by generous donors enabled them to attend and to meet other young people and individuals just like them whose lives were changed by scleroderma.

“I was sitting alone during the lunch ceremony and two women came over and sat with me. I was able to share my experience for the first time with two people who really understood. ...I’ve been living with the idea that my daughter was living on a timeline. After talking with these two women, who have been living with scleroderma for many years, it gives me hope. I can now see my daughter living a quality life and growing older.” (Genieva Manzano)

Your donations help to provide much needed educational programs and other resources for families affected by scleroderma.

PLEASE GIVE TODAY

 Clinical Trial Opportunity

Forbius logoSafety 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 (NCT03831438) and 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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