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Scleroderma Foundation
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eLetter #860 | April 10, 2020  

isolation emotional health support senior man cat

 

Living with Scleroderma: Ways to Cope with Anxiety and Isolation

Video Forum: April 13, 2020, 2 - 3 p.m. Eastern Time

To help individuals affected by scleroderma during this time of social distancing and staying at home, the Foundation's Tri-State Chapter and the Hospital for Special Surgery's (HSS) Scleroderma, Vasculitis and Myositis Center is hosting a free video forum via Skype.

Featuring Juliette Kleinman, L.C.S.W., A.C.S.W., senior social work manager, HSS, and Susan Rodriguez, L.C.S.W., social worker, HSS.  Moderated by Jessica K. Gordon, M.D., M.Sc., associate professor of clinical medicine, HSS.

SKYPE MEETING

MSAB COVID-19 eLetter Graphic

 

COVID‑19 Information & Recommendations

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

Raynaud Phenomenon Brochure 2019

 

Raynaud Phenomenon

There are many related conditions that individuals with scleroderma are susceptible to. 

One of the more common conditions is Raynaud Phenomenon

A Raynaud event typically starts after cold exposure, or an emotionally stressful situation, in one or several digits and then spreads symmetrically to all fingers of both hands. 

It is common for numbness, tingling, and clumsiness of finger use to accompany the digital color changes.

Learn more about Raynaud Phenomonen symptoms and treatments in an comprehensive pamphlet produced by the Scleroderma Foundation in consultation with Fredrick Wigley, M.D., director of the Johns Hopkins Scleroderma Center in Baltimore, Maryland.

RAYNAUD PDF

SPIN COVID-19 Survey

 

Mental Health During the COVID‑19 Pandemic

SPIN (Scleroderma Patient-centered Intervention Network) invites you to participate in its most recent research endeavor. Whether you are a SPIN Cohort participant or not, you are invited to take part in the SPIN‑COVID‑19 Study. Your answers will help SPIN better understand the impact of the COVID‑19 outbreak on mental health in people living with scleroderma. You may also be eligible to try out the new SPIN-CHAT Program (COVID‑19 Home-isolation Activities Together). Follow this link to find out more:

survey.co1.qualtrics.com/jfe/form/SV_9pEX6I6Lo6t0fBz

Three SPIN‑COVID‑19 participants who complete all scheduled questionnaires will be randomly selected to win a free trip to a scleroderma patient congress in 2021 (flight, hotel and conference registration)!

Michigan Medicine

 

PAtient Survey of experiences of Raynaud's Phenomenon (PASRAP)

The University of Michigan Scleroderma Program invites you to participate in the PAtient Survey of experiences of Raynaud's Phenomenon (PASRAP) survey. It is hoped this will improve understanding of the condition and improve treatment decision making for clinicians. If you have already completed this PASRAP survey from another source, please do not complete it again. If you have questions about the survey, please contact ssc-coordinator@umich.edu. The Scleroderma Foundation is not conducting this survey and cannot answer questions related to it.

SURVEY

TOSS scleroderma self management

 

Taking Charge of Systemic Sclerosis (TOSS)

Often, persons with scleroderma do not know other people with the disease. They might live in a state where there is no chapter of the Scleroderma Foundation, or their community might not have a support group. "Taking Charge of Systemic Sclerosis” (TOSS) is a web-based self-management program designed to help you learn about scleroderma, to manage your symptoms, and to learn strategies to help you advocate for yourself.

Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life. Register today to gain skills and confidence to manage systemic sclerosis (SSc) symptoms and to develop strategies to advocate for yourself. Peer mentors will empower you to take control of your life and your healthcare.

LEARN MORE

Sundar Balasubramanian

 

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, Dr. Sundar Balasubramanian 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 11, 18, 25
  • May 2, 9, 16

WEBINAR

Virtual Stepping Out eLetter

 

Kansas City Stepping Out

 

stepping out walkers water

 

Virtual Fundraising Event Dates

To stay safe and to keep our promise to provide life-changing 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

 
 
 
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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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