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Scleroderma Foundation
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eLetter #911 | April 2, 2021  

Discover Understand Overcome eletter

2021 Research Grant Awards

The Scleroderma Foundation is extremely pleased to announce eight research grant awardees for 2021. The proposals from these scientists received the highest ranking from the Peer‑Review committee for quality of scientific design and the prospect of advancing the body of knowledge on scleroderma. Each week, the eLetter will highlight one of the eight projects. 

Ido Amit, Ph.D., Weizmann Institute of Science
Jonathan A. Garlick, D.D.S., Ph.D., Tufts University School of Dental Medicine
Hans Dooms, Ph.D., Boston University
Harry Karmouty-Quintana, Ph.D., University of Texas Health, Science Center at Houston
Mengqi Huang, Ph.D., University of Pittsburgh
Kimberly Showalter, M.D., M.S., Hospital for Special Surgery
Stephanie Stanford, Ph.D., University of California, San Diego
Yan Wang, M.D., Ph.D., Cleveland Clinic Foundation

Learn more about scleroderma research

 BIPOC Facilitators 2021 Marilyn SibleyMarilyn Sibley

BIPOC Facilitators 2021 Erion MooreErion Moore

Meet the Facilitators of the BIPOC Virtual Scleroderma Support Group

ZOOM: Sunday, May 2, 4 p.. Eastern

Marilyn Sibley is a member of the Scleroderma Foundation Tri-State Chapter’s Board of Directors where she serves as Secretary. She serves on the the Strategic Planning Committee and the Patient Education and Support Committee. A resident of Rochester, NY, Marilyn is also the leader of the Rochester Scleroderma Support Group and the Rochester Stepping Out walk.

Erion Moore comes from California, but now is a part of the Scleroderma Foundation Oregon Chapter. He enjoys meeting and strategizing with others who have scleroderma to help manage their health and care. He has been an active member of the Scleroderma Foundation for several years.

REGISTER

Michigan Parents of Children with Scleroderma April 2021

Parents of Children with Scleroderma

TOPIC: Accepting the Unknown in Your Life
ZOOM: April 7, 2021, 7:30-9 p.m. Eastern Time

In the midst of scleroderma’s many unknowns, you can find comfort, understanding, and peace. Join us for an online support group to connect with others who understand you and learn helpful acceptance tips. We’ll start with welcome remarks and an opening icebreaker. Then we’ll 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

 ATS Meet the Experts 2021

Meet the Experts: Going Virtual with Patients and Families

ZOOM: Saturday, May 15, 2021, 10 a.m. - 1:30 p.m. Eastern Time

The American Thoracic Society (ATS) Public Advisory Roundtable (PAR) is pleased to invite you to its 15th annual free patient and family forum. This year's talk will focus on patients and families and how they navigate health care access in a post-pandemic world. The panel includes Jaspal Singh, M.D., Samantha Connolly, Ph.D., Justin Ortiz, M.D., Neeta Thakur, M.D., Charles A. Powell, M.D., and DorAnne Donesky, Ph.D. This live virtual patient education event is being held in conjunction with the ATS 2021 International Conference. Morning talks will go from 10 a.m. to 12 p.m. Eastern Time. Afternoon breakouts will go from 12 p.m. to 1:30 p.m. Eastern.

REGISTER

ATS PAR Lung Week 2021 YouTube

Pulmonary Vascular Diseases Pulmonary Hypertension & Scleroderma MYTHBUSTERS

Watch the March 24 virtual roundtable discussion hosted by the American Thoracic Society (ATS) and presented as part of “Lung Disease Week at the ATS," a program designed to facilitate information exchange between patients and experts on matters relating to lung and airway disorders. This roundtable discussion was a collaborative effort between the ATS Public Advisory Roundtable (PAR), the Scleroderma Foundation, and the PH Aware Global Association.

VIDEO

Michigan Webinar 2021 April

Holistic Approach to Stress Management

VIDEO: with Ashraf Girgis, M.S.N., S.M.C. & T., N.D.

In today’s non-stop culture, it’s hard to go a day without feeling stressed. Luckily, Dr. Ashraf Girgis has tips to get to the root of the problem and help you handle stress holistically. Watch our April webinar to learn the physiology of stress, six steps to living with stress and more. Dr. Girgis is a naturopathic doctor, stress management consultant and therapist, and a member of the Michigan Chapter Medical Advisory Board.

VIDEO

SYNC Meet Up 04-09-21

SYNC Meet-Up

VIRTUAL: April 9, 2021, 7 p.m. Eastern Time

The young adult group, SYNC (Scleroderma Young Adults Needing Connection), will hold a virtual meeting on April 9 at 7 p.m. To receive the meeting link, send an email to group facilitator Amy Gietzen.

LINK

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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