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Scleroderma Foundation
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eLetter #907 | March 5, 2021  

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Actemra Approved by FDA for SSc‑ILD

In a March 4, 2021, press release, Genentech announced that the F.D.A. approved Actemra® (tocilizumab), a biologic medication, for treatment of systemic sclerosis-associated interstitial lung disease (SSc‑ILD). Actemra slows the rate of decline in pulmonary function in adults with SSc‑ILD. Administered via subcutaneous injection, it is the first biologic therapy approved by the FDA for the treatment of SSc‑ILD. Approval was based on data from the focuSSced trial, a Phase III randomized, double-blind, placebo-controlled clinical trial of 212 adults with SSc.

READ

 YouTube 2020 Virtual University December 19 Young Adults

Coping with Mental Health Issues and Living with a Chronic Illness

GoToMeeting: Sat., March 6, 2021, 7 - 8:30 p.m. Eastern

Join our group of young adult panelists as they talk about the effects that chronic illness has on an individual's mental health. This discussion will cover topics such as how do we cope with chronic illness, struggles around coping, and how the people we love (and who love us) are affected. This panel discussion will be facilitated by Amy Gietzen.

GoToMeeting, Access Code: 419‑546‑813

New to GoToMeeting? Install GoToMeeting

Or dial in on your phone (United States): 1 (571) 317‑3122.

Dr. Tracy FrechDr. Christina Zampitella

     Frech             Zampitella  

Dr. Daniel FurstElaine Furst, R.N., B.S.N., M.A

Furst               Furst

20th Annual Cheri Woo Scleroderma Education Seminar

WEBINAR: Saturday, March 13, 2021
10 a.m. ‑ 3:30 p.m. Pacific Time

Organized by the Foundation's Oregon Chapter, the annual Cheri Woo Scleroderma Education Seminar takes place virtually this year and is free. Speakers include Tracy Frech, M.D., M.S., University of Utah Hospital, 2020 Scleroderma Foundation Doctor of the Year, presenting Systemic Sclerosis Digestive Issues; Christine Zampitella, Psy.D., F.T., The Center for Grief and Trauma Therapy, Integrative Psychology Group, presenting Disenfranchised Grief; Daniel Furst, M.D., M.A.C.R., ACR Fellow, presenting Changes in Treatment: Past (2000) vs. present (2020-2021); and Elaine Furst, R.N., B.S.N., M.A., presenting Sexuality in Scleroderma.

The webinar takes place via Zoom, and everyone is welcome to attend, especially our friends in Alaska!

REGISTER

Michigan Webinar 2021 March Thombs

Making Tough Healthcare Decisions: A Toolkit by Dr. Thombs

VIDEO

Individuals with scleroderma and their caregivers often face difficult or unfamiliar healthcare decisions. But you can feel more prepared and empowered. Watch our March webinar with Brett Thombs, Ph.D., Jewish General Hospital McGill University, Montreal, Quebec, for a deep dive into making healthcare decisions, conducting discussions with your doctors and specialists, and more.

VIDEO

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Share Your Vaccination Photo!

Have you received your COVID-19 vaccine? Please share a photo of that special moment on social media and tag the Scleroderma Foundation with #scleroderma. This is a great way to encourage others to join the vaccination club.

If you have questions about the COVID-19 vaccines and scleroderma, please read the formal recommendations from the Foundation's Medical & Scientific Advisory Board on scleroderma.org/covid_vaccine.

SPIN CHAT

SPIN-CHAT: Worry Management (Part II)

WEBINAR: Wednesday, March 10, 7 p.m. Eastern Time

The SPIN-CHAT (COVID-19 Home-isolation Activities Together) program continues its 11-week webinar series related to coping during COVID-19, tailored to the needs of the scleroderma community. The March 10 session is part two of Worry Management with Ghassan El-Baalbaki

SPIN-CHAT

Scholarship Annabelle Carter Memorial Foundation

Anna Belle Carter Memorial Scholarship

Anna Belle Carter was a wonderful 13-year-old living a full life with scleroderma, who passed away in July 2020 from COVID-19. The Anna Belle Carter Memorial Foundation was established by her family to financially assist deserving students who are affected by scleroderma in furthering their education goals at an accredited college, university, or technical school to attain an undergraduate degree, an initial graduate degree, or certification. The ABCMF awards scholarships on the basis of academic potential and demonstrated achievement, exemplary citizenship, personal character and need. 

Read complete application criteria.

All applications are due by April 14, 2021, to be reviewed and awardees selected by May 5, 2021.

APPLY

Children's Friend Seven Hills Foundation graphic

Children's Friend Seven Hills Foundation

¿Es Usted Padre o Madre de un Niño con Problemas de Salud Mental, Problemas Médicos y/o una Enfermedad Rara?

Participe en nuestro cuestionario digital: Experiencias del Acceso al Tratamiento de Salud Mental. Tardará en rellenar este cuestionario unos 10-20 minutos. La información que nos proporcione nos ayudará a entender mejor las dificultades que distintas familias enfrentan, lo que posiblemente nos permitirá aumentar el acceso de las mismas a los servicios de salud mental.

No dude en contactar a Maria Martinez Calderon, L.M.H.C., y Kim Hager, L.I.C.S.W., a Children’s Friend, Inc. al (508) 753-5425, si tuviera alguna duda.

ENCUESTA

Children's Friend Seven Hills Foundation graphic

Children's Friend Seven Hills Foundation

Are you a parent of a child with a mental health condition, a medical condition, and/or a rare disease?

Participate in a Survey: Experiences in Accessing Mental Health Treatment. This online survey takes approximately 10-20 minutes and will contribute to a greater understanding of difficulties families face with the hope of increasing families’ access to mental health services. Thank you for your willingness to participate in the survey and provide valuable feedback!

Please contact Maria Martinez Calderon, L.M.H.C., and Kim Hager, L.I.C.S.W., at Children's Friend, Inc. at (508) 753-5425 with further questions.

SURVEY

MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

Updated February 10, 2021

The American College of Rheumatology released clinical guidance on the COVID-19 vaccines. This information is available on the ACR website and has been added to the Foundation's website.

Information and frequently asked questions regarding the COVID-19 vaccines have been addressed by the Scleroderma Foundation's Medical & Scientific Advisory Board, to be used in consultation with your rheumatologist or other health care provider.

These guidelines, along with more information and recommendations for individuals affected by scleroderma about COVID-19 are posted at scleroderma.org/covid19. Please check this page from time to time for updates.

COVID‑19

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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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