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eLetter #853 | February 21, 2020  

Rare Disease Day 2020 Childhood 

 

Rare is Strong Ever Day

February 29 is Rare Disease Day. You can increase awareness and understanding of rare diseases, including scleroderma, by sharing these messages on your social media accounts.

  • 72% of rare diseases are genetic
  • 70% of genetic rare diseases start in childhood
  • 300 million people live with a rare disease worldwide
  • Over 6,000 different rare diseases

Visit the Rare Disease Day website to download social media graphics, including a Facebook Frame and Twibbon.

RARE DISEASE DAY

Rare Disease Week on Capitol Hill 2020 

 

Rare Disease Week on Capitol Hill

More than 800 rare disease advocates will be in Washington, DC for Rare Disease Week on Capitol Hill 2020. Here are ways that you can be a part of Rare Disease Week and participate right from your own home.

  1. Monday 2/24: Watch the FDA's Rare Disease Day Public Meeting livestream.
  2. Tuesday 2/25: Watch the Rare Disease Congressional Caucus briefing livestream.
  3. Wednesday 2/26: Watch the Rare Disease Week Legislative Conference livestream.
  4. Thursday 2/27: Email and/or call your Members of Congress and ask Congress to support the Rare Disease Community.
  5. Friday 2/28: Watch the Rare Disease Day at NIH livestream.

RARE DISEASE WEEK

 Ohio Sunday Sit Down

 

Talking Isn't a Cure, But it Sure Helps

Sunday Sitdowns: February 23, 1 p.m. Eastern Time

Join the Ohio Chapter for Sunday Sitdowns the last Sunday in every month at 1 p.m. Eastern Time via Facebook Live.

Please note, given the open nature of Facebook, please do not share private, personal information during this conversation. However, Sunday Sitdowns are a great time to connect with others who live with the challenges cause by scleroderma.

SUNDAY SITDOWN

Ticket to Work - WISE 2018 

 

Choosing a Service Provider That's Right for You

WISE Webinar: Wed., Feb. 26, 3-4:30 p.m. ET

How can a Ticket to Work service provider help you reach your work goals? Find out during this month’s WISE (Work Incentives Seminar Event) webinar. Choose Work will talk about the free services and supports available to eligible people with disabilities and share how you can connect with a service provider that’s right for you. Click the link below for more information and to join us.

WEBINAR

2020 National Conference E-Alert

 

Apply for a Conference Scholarship!

March 18 is the deadline for conference scholarship applications to be received in the Foundation's national office. Detailed instructions are included on the form, which is available on the National Conference website.

The National Patient Education Conference takes place in Bellevue, Washington, July 17-19, 2020.

Join others with scleroderma who are "Climbing Toward a Cure!" Learn from the top scleroderma experts in the world. Connect with others who have scleroderma. Talk with researchers in person.

SCHOLARSHIP

 Janet Pope MD 4x6 Portrait

 

Proposed '15% rule' outlines common organ complications in scleroderma

Healio Rheumatology, an online medical magazine, has published a story that reports on a presentation given by Janet Pope, M.D., M.P.H., University of Western Ontario, Often, who is a member of the Scleroderma Foundation's Medical & Scientific Advisory Board.  Dr. Pope advanced a theory at the 2020 Rheumatology Winter Clinical Symposium that she called the 15% Rule of Thumb, which helps identify the subset of individuals who have scleroderma who also have a digital ulcer or complicated digital ulcer, PAH, inflammatory arthrtitis, myopathy or myositis, or Sjogren Syndrome.  

Read the full article on Healio Rheumatology.

READ

Stepping Out Logo 2018 Be Part of the Cure

 

Be Part of the Cure!

You can become part of the cure by raising money at a Stepping Out to Cure Scleroderma walk or 5K run. Stepping Out is a rallying point for family, friends and coworkers to generate funding for the Foundation's mission: support, education, and research.

Several new dates have been added to the calendar!

STEPPING OUT

More than Scleroderma Boehringer Ingelheim

More than Scleroderma Boehringer Ingelheim Jovana

 

More Than Scleroderma

A series of 12 scleroderma education programs are being offered in different locations around the country from February through April by one of the Scleroderma Foundation's partners, Boehringer Ingelheim.  These programs are free and open to individuals affected by scleroderma and their family and friends.  The Foundation is not managing registration and is not responsible for the content.  When you register for a "More than Scleroderma" program, you are providing your contact information to a third party, Boehringer Ingelheim.

To learn more and to register, call (855) 415-7492.

 Clinical Trials Gov

 

Modernizing ClinicalTrials.Gov

The National Library of Medicine (NLM) is asking for public comment in its current effort to modernize ClinicalTrials.gov, the world’s largest public clinical research registry and results database. The modernization will help improve user experience with an updated platform that will help grow and enhance efficiency. The focus of the modernization includes improving website functionality, submission processes, and use of data standards.

If you would like to find out more information on the project and are interested in submitting a comment, you should visit https://grants.nih.gov/grants/guide/notice-files/NOT-LM-20-003.html.

Please send your submissions to NLM by no later than Saturday, March 14, 2020.

birthday cake teal

 

Celebrate Your Birthday!

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 fundraising event to benefit the Foundation for any reason you choose.

FACEBOOK FUNDRAISING

Clinical Trial Opportunities

Safety and Tolerability Study of AVID200, a Novel TGF-beta 1 & 3 Inhibitor, in Patients with Diffuse Cutaneous Systemic Sclerosis

Forbius logoSeveral 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
 
 
 
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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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