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| eLetter #929 | August 6, 2021 |
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Updated Mask Advisory & Vaccine Information
Over the past 16 months, the scleroderma community has faced enormous changes and challenges caused by the pandemic. As we learned more about the virus, we endeavored to bring you timely updates and information from the Scleroderma Foundation's Medical & Scientific Advisory Board (MSAB) and government resources. While everyone 12 years of age and older is now eligible to get a free COVID−19 vaccination, it’s important to weigh emerging knowledge about the virus, vaccines, and evolving safety guidance with the risks for those with scleroderma/systemic sclerosis. Follow the link below to read updated guidance, as of August 1, 2021, regarding masks and vaccines from the MSAB's Leadership Committee.
COVID-19 UPDATE
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Strategic Plan Update
VIDEO
If you missed the August 3 Strategic Plan update presented by our new CEO, Mary Wheatley, you can still watch it on YouTube. The recording includes the question and answer session.
WATCH
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Renal Involvement and Scleroderma, with Dr. Vivek Nagaraja
VIDEO
Individuals living with scleroderma know the disease can affect many parts of the body. Watch a webinar produced by the Michigan Chapter as Vivek Nagaraja, M.B.B.S., Michigan Medicine, takes a deep dive into scleroderma overall and discusses how scleroderma can affect the kidneys, in particular.
VIDEO
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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. Opening comments from Selma Blair set the scene for two days of workshops that range from global health policy to advocating for your future to 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: 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 by scleroderma. For questions, please email Amy Gietzen, agietzen@scleroderma.org, or Natalie Puccio, nataliepuccio18@gmail.com.
REGISTER
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Proud Partner with World Lung Day
The Scleroderma Foundation is proud to be a partner in World Lung Day (WLD), September 25, a day for lung health advocacy and action. WLD is an opportunity for us all to unite and promote better lung health globally. 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
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9th PeDRA Annual Conference
VIRTUAL: October 14-15, 2021
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
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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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