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Scleroderma Foundation
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eLetter #927 | July 23, 2021  
 Ohio Sunday Sit Down

Sunday Sitdown

FACEBOOK LIVE: July  25, 1 p.m. Eastern Time (12 p.m. CT, 11 a.m. MT, 10 a.m. PT)

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.

WATCH

Michigan July Males Support Group 2021

The 20%: A Virtual Support Group for Males Living with Scleroderma

ZOOM: July 28, 2021; 7 p.m. - 8 p.m. Eastern Time
Topic: Pulmonary Fibrosis: Facts, Causes and Treatments

To support the men with scleroderma in our community, the Michigan Chapter is hosting a virtual support group series just for you. Join the July 28 virtual group from 7 to 8 p.m. to discuss pulmonary fibrosis symptoms, risk factors, possible treatments, and more. The group will also review helpful tips and reflective questions, leaving time to have all of your questions answered.

REGISTER

Ticket to Work - WISE

Needs Accommodations for Work?

WEBINAR: July 28, 3 p.m. Eastern Time

This month marks the 31st anniversary of the signing of the Americans with Disabilities Act (ADA) that prohibits discrimination based on disability in many areas including employment. Social Security’s Ticket to Work program and the Northeast ADA Center are celebrating disability inclusion in the workplace by sharing resources on reasonable accommodations for work. Join us July 28 at 3 pm EDT for the next WISE webinar to learn how job accommodations and Work Incentives can provide the supports and services you need to find and maintain employment.

REGISTER

Michigan Parents of Children with Scleroderma August 2021

Parents of Children with Scleroderma Support Group

ZOOM: August 4, 2021; 7:30 p.m. - 9 p.m. Eastern Time
Topic: Tips for Going Back to School

Returning to school can be challenging for any child. But it can be especially hard when your child has scleroderma and our world is recovering from a pandemic. Join us for an online support group on August 4 from 7:30 to 9 p.m. to find tips for a smooth and fun transition. We’ll start with welcome remarks and an opening icebreaker, move on to an educational session with helpful tips, and end with a closing mindful moment. Register now and find support and hope in the community.

REGISTER

Health Advocacy Summit 2021 August 7/ 8

Health Advocacy Summit

VIRTUAL: August 7 & 8; 11 a.m. - 5 p.m. Eastern Time

Health Advocacy Summit (HAS) will host its 2021 annual summit virtually. Selma Blair sets the scene with opening comments to two days of workshops that range from global health policy to advocating for your future and media representation of chronic illness, and much more. Founded in 2016 by Sneha Dave, HAS is run entirely by young adults with chronic medical disabilities. 

REGISTER

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SYNC Meet Up Young Adults Tri-State August 2021

SYNC: Scleroderma Young Adults Needing Connection

ZOOM: Friday, August 13 at 7:00 p.m. Eastern Time

SYNC, Scleroderma Young Adults Needing Connection, invites you to join their August meeting for a general discussion among young adults between the ages of 18 and 42 looking to connect with other individuals affected with scleroderma. For questions, please email Amy Gietzen, ageitzen@scleroderma.org, or Natalie Puccio, nataliepuccio18@gmail.com.

REGISTER

 World Lung Day 2021 Save the Date

World Lung Day - September 25

World Lung Day (WLD), September 25, is a day for lung health advocacy and action. It's an opportunity for us all to unite and promote better lung health globally. The Scleroderma Foundation is proud to be a partner in World Lung Day. The theme this year is "Care for Your Lungs." Say no to tobacco, protect them through vaccination, breathe clean air, and take regular physical exercise. 

LEARN MORE

PEDRA Annual Conference 2021

9th PeDRA Annual Conference

The Pediatric Dermatology Research Alliance (PeDRA) will hold its 9th annual conference virtually October 14-15. Free registration is available to all patient stakeholders until September 20, after which there will be a $15 fee. This applies to patients and parents as well as organizational staff and leadership. To register for free, follow this link and use the “Community Early Registration” category.

LEARN MORE

MSAB COVID-19 eLetter Graphic

Para Información Sobre COVID-19

El Comité Directivo del Consejo Médico y Científico Asesor de la Fundación Esclerodermia está de acuerdo con las recomendaciones de los CDC para aquellos que tienen una afección o toman medicamentos que debilitan el sistema inmunitario. Estudios recientes sugieren que para las personas inmunocomprometidas, en particular las que toman micofenolato mofetilo, la vacuna puede tener una eficacia inferior al 50%. Por ello, ponen énfasis en recomendar que las personas diagnosticadas con esclerodermia/esclerosis sistémica que reciban terapias inmunosupresoras como el micofenolato mofetilo y el rituximab, así como quienes convivan con ellas, sigan utilizando mascarillas, practiquen el distanciamiento social, eviten las aglomeraciones y los espacios interiores poco ventilados y sean diligentes en el lavado frecuente de manos.

Lee Mas

MSAB COVID-19 eLetter Graphic

Important Updates Regarding Mask Wearing for Immunocompromised Individuals with SSc

Updated May 17, 2021

With the recent CDC announcement of new guidelines on mask wearing, the Scleroderma Foundation's Medical & Scientific Advisory Board issued the following statement:

The Scleroderma Foundation’s MSAB Leadership Committee agrees with the CDC guidelines for those who have a condition or are on medications that weaken the immune system. Recent studies suggest that immunocompromised people, particularly those on mycophenolate mofetil, may have had less than 50% effectiveness of the vaccine. Thus, they strongly recommend that people diagnosed with scleroderma/systemic sclerosis who are receiving immunosuppressive therapies such as mycophenolate mofetil and rituximab and those who live with them should continue to wear face masks, practice social distancing, avoid crowds and poorly ventilated indoor spaces, and use diligence in frequent hand washing.

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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