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eLetter #826 | August 16, 2019  

YouTube 2019 Keynote Endure Silver


Conference Videos on YouTube

During the 2019 National Conference, 14 workshops and presentations were video taped.  Those videos are now being posted on the Scleroderma Foundation's YouTube channel, www.YouTube.com/sclerodermaUS.  The first video to be uploaded was the opening keynote speech, "Endure: The Life & Art of Paul Klee," by Richard M. Silver, M.D., Medical University of South Carolina.

WATCH VIDEO

2019 Conference Award Advocate Davila eLetter

(L-R): Cos Mallozzi, National Chairman, Jacob Davila, Texas Bluebonnet Chapter


National Advocate of the Year

Jacob Davila, of the Texas Bluebonnet Chapter, was recognized as the 2019 National Advocate of the Year.  Jacob personifies what it means to “speak up for scleroderma.”  You can hear his voice on the steps of the Texas state capitol and in the halls of Capitol Hill in Washington, D.C.  For several years, Jacob has been active in awareness and advocacy in many ways.  He regularly works with the Foundation’s National Office to ensure advocacy connects with chapter events, social media, and fundraisers.  He also does an outstanding job interacting with young adults and bringing people together through social media.  Jacob never misses an advocacy committee meeting, and he’s the lead volunteer in the advocacy booth at the National Conference. He may be quiet, but he roars a resounding message to Speak Up for Scleroderma at every opportunity. Congratulations, Jacob!

CONFERENCE AWARDS

Disaster Preparedness Checklist sq


Preparing for an Emergency When You Have Lung Disease or Sleep Disorder

A helpful guide from the American Thoracic Society can help you plan ahead for an emergency if you have lung disease or a sleep disorder. This two-page document covers a range of information to consider so you can react confidently if you have to evacuate or shelter in place.

HOW TO PREPARE

Ticket to Work - WISE 2018


Putting It Together: Ticket to Work’s Resume and Interview Tips

Wednesday, August 28, 3-4:30 p.m. ET

Do you have questions about writing your resume or preparing for a job interview and addressing gaps in employment? Join Choose Work for the next WISE webinar, “Putting it Together: Ticket to Work’s Resume and Interview Tips.”  The webinar also covers how to discuss disability with an employer and how Social Security’s Ticket to Work program can help job seekers succeed on the path to financial independence. Join the conversation and share the registration link today!

REGISTER

Advocacy Capitol Hill 2018 Markoff

Rosemary Markoff,
Capitol Hill Day 2018


National Commission on Scleroderma and Fibrotic Diseases Act

The National Commission on Scleroderma and Fibrotic Diseases Act, H.R. 3446, introduced in the U.S. House of Representatives by Rep. Peter T. King (R-NY-2), is a bipartisan, budget-neutral bill that would establish a commission to improve coordination of NIH-supported research related to scleroderma and other fibrotic diseases.  

You can help move the bill through committee by downloading and signing the advocacy letter asking your U.S. Representative to cosponsor the bill.  Mail the signed letter to the Scleroderma Foundation, 300 Rosewood Drive, Suite 105, Danvers, MA  01923.  Advocacy letters will be hand-delivered to each Representatives' office on Capitol Hill.

DOWNLOAD & SIGN ADVOCACY LETTER

Stepping Out Tri-State 2019 Mom & Baby


Step Out and Be Part of the Cure

When you walk you make a difference in the lives of whole families impacted by this life-threatening disease.  Only by raising money can we provide emotional support and disease education to address the needs of individuals with scleroderma today, while fostering research to discover the cause, understand the mechanism, and overcome the disease forever.

Find a Stepping Out to Cure Scleroderma fundraising event near you. Ask your family, friends, and coworkers to join your walk team and to help you raise money.

Below are links to upcoming walks. Online registration typically closes a day or two before the walk date, but you may register on-site on the day of the walk.

Aug. 17:  San Diego CA
Aug. 18:  Germantown WI
Sept. 7:   Springfield IL
Sept. 8:   North Shore MA, Philadelphia PA
Sept. 14: Snohomish WA
Sept. 15Westfield MA
Sept. 21Dixon IL
Sept. 29Boston MA
Oct.    5:  Kansas City MO

FIND MORE WALKS

Discover Understand Overcome square


Research Grant Deadline: September 16

If you are involved in scleroderma research or research that involves fibrotic diseases, the Scleroderma Foundation offers two distinct awards: the New Investigator Grant and the Established Investigator Grant.

Funding choices are based on scientific merit and are made by a peer-review panel that follows the method used by the National Institutes of Health. 

Grant applications must be received by 5 p.m. Eastern Time, Monday, September 16, 2019, in the Scleroderma Foundation's National Office. Postmarks do not satisfy the requirement.

APPLY OR LEARN MORE (800) 722-4673

 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 (NCT03831438) 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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