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Scleroderma Foundation
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eLetter #862 | April 24, 2020  

Volunteers Chicago Conference 2019

Thank You, Volunteers!

In celebration of National Volunteer Week (April 19 to 25, 2020), the Scleroderma Foundation extends its deepest gratitude to the thousands of volunteers who support our mission with their time, talent, and expertise.

Volunteers are the heart of the Scleroderma Foundation and participate in every operational area. Volunteers serving on chapter boards are vital to our organization; most wear multiple hats ranging from functional tasks to fulfilling their roles on the board. Our volunteer National Board of Directors plays an essential fiduciary role and sets policy and strategy. This year highlighted the extraordinary value the volunteer members of the Medical & Scientific Advisory Board add to the Foundation. Volunteers at fundraising and educational events keep our organization running smoothly. And, Support Group Leaders, who for so many are the face of the organization, create connections and help people cope with this life-threatening disease.

THANK YOU!!

VOLUNTEER

Awareness 2019 Recruit

Tell Your Story

You can help with the June scleroderma awareness campaign while you #StayatHome. Are you ready to share your story with the world? So few people know about scleroderma. Let the world get to know you, and help us raise awareness.

Send an email to our partners at Brogan & Partners Convergence Marketing.  Brogan & Partners has been a long-time collaborator with the Foundation, both nationally and with the Michigan Chapter.  

EMAIL

Boehringer Ingelheim Plain

EU Commission Approves Nintedanib for Treatment of SSc-ILD

This week, Boehringer Ingelheim Pharmaceuticals announced that the European Commission approved nintedanib for the treatment of systemic sclerosis-associated interstitial lung disease (SSc-ILD) in adults. The FDA approved nintedanib for SSc-ILD in the USA in September 2019.

PRESS RELEASE

Virtual Stepping Out eLetter

 

stepping out walking for grandma

 

stepping out two women walking

Virtual Fundraising Event Dates

To stay safe and to keep our promise to provide the highest quality support, education, and research for everyone affected by scleroderma, many of the Scleroderma Foundation's Stepping Out walks and 5Ks have become exciting VIRTUAL fundraising experiences. Some are creating open formats for participants to choose to cycle or run or walk or anything fun! 

The extraordinary circumstances that confront us all illustrate just how vulnerable individuals who have scleroderma are, and why we can't miss a step.

A list of walks that have changed to virtual fundraising events as of now are listed below. Walks hosted later in the year and taking place as planned appear after the virtual event listing. You may also contact your chapter to learn their plans if a walk site is not listed.

Virtual Fundraising Events:

Traditional Stepping Out Walks:

STEPPING OUT

Capitol Hill Day 2019 Rosemary Markoff Rep Anthony Brindisi

Rosemary Markoff with Rep. Anthony Brindisi (D-NY-22)

Ask Your Member of Congress to Support Scleroderma Research

We can take advantage of this down time to strengthen our collective voice to educate Congress about the importance of ongoing scleroderma research. You don’t need to leave home to make your voice heard.

Sign prepared letters asking your U.S. Representative and Senators to co-sponsor a bipartisan, budget-neutral bill that supports people living with all fibrotic diseases. Please complete both letters—H.R. 3446 (House) and S. 2477 (Senate).

Complete the letters online and email them to advocacy@scleroderma.org. You can also print the letters and complete by hand. Scan and email them to advocacy@scleroderma.org or send by U.S. mail to Scleroderma Foundation; Attn: Advocacy; 300 Rosewood Drive, Suite 105; Danvers, MA 01923.

Encourage your family, friends, colleagues and neighbors to complete letters too. More voices send a louder message!

Ohio Sunday Sit Down

Lucille Miller

Sunday Sitdown

Facebook Live: April 26, 1 p.m. Eastern Time

Join the Ohio Chapter for Sunday Sitdowns on the last Sunday of every month at 1 p.m. Eastern Time via Facebook Live. This is a time to connect with others who live with the challenges caused by scleroderma.

Please note, given the open, unsecure nature of Facebook, do not share private, personal information during this conversation.

SUNDAY SITDOWN

NeedyMeds

Resource Center for Finding Assistance with Healthcare Costs and Financial Hardships Related to COVID-19

NeedyMeds launched a resource center that helps you search for government and private programs that can help with healthcare costs and financial hardships caused by the COVID-19 virus.  Search by state or nationwide, or by the name of a specific program.

COVID-19 SERVICES & PROGRAMS

SF Logo Standard JPG

 

MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

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

Find the most current information and recommendations regarding COVID‑19 and scleroderma on the Foundation's website. This is a "living document" that will be updated as new information arises. Please check it from time to time.

  • Scleroderma & COVID‑19 Information & Recommendations
  • Statement "Important Information Related to COVID‑19 and Juvenile Scleroderma"
  • Message from Scleroderma Foundation CEO, Robert J. Riggs
  • "Staying Well During COVID‑19," Video, Dr. Frech
  • "Scleroderma Lung Health & COVID‑19," Video, Dr. Assassi
  • "Scleroderma & COVID‑19: A Conversation with the Experts," Video, SPIN

Spanish-language versions for adult and juvenile scleroderma are also posted.

  • Español "COVID‑2019 ("Coronavirus") Información y Recomendaciones del Comité de Asesoría Médica y Científica de la Fundación de la Esclerodermia
  • Información Importante Traducida al Español Sobre COVID‑19 y Esclerodermia Juvenil

COVID‑19

Sundar Balasubramanian

Sundar Balasubramanian, Ph.D., C.‑I.A.Y.T.

STaY Breathing!

Scleroderma Telehealth Yoga Breathing (STaY Breathing!) is the telehealth version of the ongoing Gentle Yoga & Yogic Breathing (GYYB) program for individuals who have scleroderma. In the current environment of COVID‑19, it is important to minimize exposure, which is especially relevant to those who have scleroderma. At the same time, keeping up with good exercise is the key to better health and symptom management. With this in mind, Sundar Balasubramanian, Ph.D., C.‑I.A.Y.T., is transforming the GYYB program into the telehealth mode so you can practice from home. Attendance is restricted to individuals with scleroderma. There is no charge to join. Voluntary donations will be accepted.

You may choose to attend one or more webinars from the following dates, all occur at 11 a.m. Eastern Time:

  • April 25
  • May 2, 9, 16

WEBINAR

 COVID-19 Molecule CDC

myPHteam

Have you spoken to your loved ones about COVID-19 safety measures when it comes to your health condition? Don't worry, myPHteam has you covered! Here are some tips to help them understand your position:

myPHteam

Clinical Trial Opportunities

Belimumab and Rituximab Combination Therapy

Overview

  • This is a randomized, placebo-controlled trial, where patients will be randomized in a 2-to-1 fashion to treatment with rituximab 1000 mg every other week for two infusions followed by weekly belimumab (200 mg subcutaneously) or placebo infusions followed by weekly subcutaneous placebo injections
  • All patients will receive background mycophenolate mofetil
  • Study duration: 15 months

Inclusion Criteria

  • Age: 18 - 80 years
  • Classification of systemic sclerosis (SSc), as defined using the 2013 American College of Rheumatology/European Union League Against Rheumatism classification of SSc
  • Diffuse skin involvement
  • Disease duration of less than or equal to 3 years as defined by the date of onset of the first non-Raynaud’s symptom
  • A modified Rodnan Skin Score (mRSS) of > 14

HSS Hospital for Special Surgery logoExclusion Criteria

  • Prior use of B-cell depleting therapies
  • FVC < 45%
  • DLCO < 30%

CONTACT

Hospital for Special Surgery:

Liza Morales, Research Coordinator
(212) 774-2561, moralesli@hss.edu

Beemnet Amdemicael, Research Assistant
(212) 774-2048, amdemicaelb@hss.edu

 
 
 
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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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