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Scleroderma Foundation
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eLetter #861 | April 17, 2020  

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

resources reading lap top 

Virtual Support Group Meetings

Many scleroderma support groups around the country are adapting to local Stay at Home directives by using online meetings tools. Contact your local support group leader or chapter to learn if they are using this approach.

To participate in an online meeting, your computer needs a webcam, speakers, and microphone. Laptops generally come with these features built in.  Tablets and smart phones can often be used to access online meetings, too, by using an app from the same site.

A list of all scleroderma support groups, group leaders, and their contact info appears on the Scleroderma Foundation website.  Chapter websites include lists of local groups.

GROUPS

Elizabeth Volkman MD Portrait

Elizabeth R. Volkmann, M.D., M.S.

Balancing Your Immune System:
A Special Webinar on Nutrition for Scleroderma Patients

Webinar: April 24, 3 p.m. Eastern Time

You're invited to join a live webinar with Elizabeth R. Volkmann, M.D., M.S., University of California, Los Angeles, on nutrition and its role in supporting the immune system.

Collaboratively sponsored by Scleroderma Foundation, Scleroderma Research Foundation, and Scleroderma Canada.

WEBINAR

Janet Poole April 2020 Webinar Thumbnail

Janet Poole, Ph.D., O.T.R./L.

Taking Care of Yourself at Home: Maintaining Hand and Face Mobility

April 16 Webinar Recording

Watch a recording of the webinar given by Janet Poole, Ph.D., O.T.R./L., Professor of Occupational Therapy and Department Chief of Pediatrics at the University of New Mexico, providing helpful instruction on managing the impact scleroderma has on your hands and face.

Collaboratively sponsored by Scleroderma Foundation, Scleroderma Research Foundation, and Scleroderma Canada.

VIDEO

Michigan 2020 Webinar April Oral Health

Scleroderma and Oral Health

Webinar Recording

To help individuals with scleroderma achieve better oral health, it’s important for dentists and doctors to work together. Watch the April webinar produced by the Michigan and Tri-State Chapters to learn tips for collaboration and overcoming dental challenges from David Leader, D.M.D., M.P.H.

VIDEO

Advocacy Demi Senator Portman Capitol Hill Day

Demi Montgomery (left) with Senator Rob Portman (R-OH)

Ask 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!

Awareness 2019 Recruit

Tell Your Story

You can help with the upcoming scleroderma awareness campaign for June without leaving the comfort of your home. Are you ready to share your story with the world? So few people know about scleroderma. Let the world get to know your story, and help us raise awareness while you stay at home.

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

Ticket to Work - WISE 2018

Ticket to Work: Support on Your Journey to Employment

Webinar: April 22, 3 p.m. Eastern Time

Are you looking for FREE employment support? Do you receive SSDI (Social Security Disability Income) or SSI (Supplemental Security Income) and you want to work? Ticket to Work provides access to employment support services for Social Security Disability beneficiaries who want to work. Join ChooseWork for the next Work Incentive Seminar Event (WISE) webinar to learn more about how Ticket to Work can support you on your path to work. Webinar topics:

  • Choosing work, whether you’re returning to work or looking for your first job
  • Social Security rules and programs that may help you as you pursue your goals and financial independence
  • Your path to work, with information on the different phases of the journey and where you can find support

The webinar will also provide information about choosing a service provider, setting and pursuing work goals, and resources available to help you transition to the workplace.

WEBINAR

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

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 18, 25
  • May 2, 9, 16

WEBINAR

 Clinical Trial Opportunities

ClinicalTrials.gov

Clinical Trials mapYou can track clinical trials for scleroderma, systemic sclerosis (SSc), pulmonary hypertension, and more at ClinicalTrials.gov. This robust website is published and maintained by the National Institutes of Health, U.S. National Library of Medicine. Search options include trials that are recruiting, country, state, and more. States highlighted in red in the map (left) have the most scleroderma-related trials. This concentration in specific states is solely the result of the geographic location of the institutions that focus on scleroderma research.

You can also find information about scleroderma-related clinical trials on scleroderma.org/centers, where designated "Scleroderma Research and Treatment Centers" list the trials taking place in their institutions.

CLINICAL TRIALS

 
 
 
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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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