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Scleroderma Foundation
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eLetter #905 | February 19, 2021  

Texas Education Doctors 2021 February

Virtual Scleroderma Education Day - Texas

WEBINAR: Saturday, February 27, 2021
9 a.m. - 5 p.m. Central Time

The Foundation's Texas Bluebonnet Chapter is hosting a virtual education day on Saturday, February 27, with six presenters plus a youth/young adult panel discussion. The webinar takes place via GoToWebinar and is open to all.

Speakers include four members of the chapter's Medical Advisory Board. From the Houston Scleroderma Center: Maureen Mayes, M.D., M.P.H., and Shervin Assassi, M.D., M.S. From the UT Southwestern Medical Center in Dallas: Fernando Torres, M.D., Pulmonologist and Director of Lung Transplant Center, and Heidi Jacobe, M.D., Dermatologist. From Tulane University School of Medicine in Louisiana: Lesley Ann Saketkoo, M.D., M.P.H. And, Ginny Maril, Ph.D., Licensed Psychologist from Austin.

REGISTER

Dr. Julianna Desmarais, M.D.

Scleroderma 101 for Newly Diagnosed

WEBINAR: Saturday, February 27, 2021
10 a.m. - 11 a.m. Pacific Time

The Foundation's Oregon Chapter is offering a webinar for individuals newly diagnosed with scleroderma. The presenter is Julianna Desmarais, M.D., a general rheumatologist at OHSU (Oregon Health & Science University) and an Assistant Professor of Medicine at OHSU's Division of Arthritis and Rheumatic Diseases. This webinar is also a great primer for those with long-term diagnosis also. There will be time for questions at the end of the presentation.

The webinar takes place via Zoom, and everyone is welcome to attend, especially our friends in Alaska! To receive the Zoom meeting information, send an email to the chapter at the link below.

ZOOM INFO

Ohio Boys Kids Pediatric

Virtual Pediatric Rare Disease Fun Night

WEBINAR: February 23, 2021, 5:30 p.m. - 7:30 p.m.

The Foundation's Ohio Chapter is hosting a fun night of kids' trivia, yoga breathing and poses, and just a space to connect with other kids who are rare and unique. Wear a funny hat or eye mask for the party. Get creative. No facemasks needed for this VIRTUAL event—yay! This event is free, but a parent must register in advance. After registering, you will receive a confirmation email containing information about joining the meeting.

REGISTER

DOWNLOAD a free Eric Carle coloring page of a caterpillar or butterfly, and share your masterpiece at the end of the party.

2021 Virtual Conference image eLetter 72

2021 National Patient Education Conference

VIRTUAL: July 17-18, 2021

Tell us the topics you want to learn about during the 2021 virtual National Patient Education Conference. 

Addressing your needs is whats the conference is all about, so please share your thoughts about the information that you need to live your best scleroderma life.  

Send an email today!

EMAIL

 Black Health Matters logo

Black Health Matters Winter Summit

WEBINAR: Saturday, February 27, 2021
8:10 a.m.-5:30 p.m. Eastern

Join Back Health Matters for the largest public health event in the nation. See the leading physicians, nurses, scientists, and even celebrities provide information and share testimonials on living your healthiest life. Best of all, this event is free!

Topics include fitness, health equity, affordability of medicine, COVID-19 vaccine, diabetes, mental health, heart disease, kidney disease, sickle cell, genetics and you, gynecologic health, rare disease, financial health literacy, lupus, caregiving, CBD and you, clinical trials, patient advocacy, women's health, men's health.

REGISTER

Rare Disease Day 2021 Video

Rare Disease Day Heroes - February 28

The official Rare Disease Day 2021 video is available in 36 languages and kicks off an international patient-led movement that puts rare diseases in the spotlight. The video features six continents, six portraits, six heroes, and six lives in an effort to shine a light on the global and wide community of 300 million people and over 6,000 rare diseases represented by six heroes: Angelina, Syafiq, Regina, Tristan, Jon-Kristian, and Harvey.

VIDEO

 Stanford Medicine X

Medicine X

Patients and caregivers are invited to apply to present a 5-minute Ignite! style presentation on stage at Stanford Medicine X, which will be held April 7, 2021 as an online virtual conference at Stanford University. An Ignite! presentation aims to inform and inspire.

APPLY

SPIN CHAT

SPIN-CHAT: Adapted Home Exercise (Part I)

WEBINAR: Wednesday, February 24, 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 February 24 session features Kelsey Ellis & Delaney Duchek presenting the first of a two-part program on adapted home exercise. 

SPIN-CHAT

MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

Updated January 8, 2021

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

Ticket to Work WISE ChooseWork Looking for a Job

Looking for a Job?

WEBINAR: February 24, 2021, 3 p.m. Eastern Time

Looking for a job? Curious about the different ways to find a job? If you receive Social Security disability benefits, discover FREE employment supports available through the Ticket to Work program that can help people with disabilities create a career. 

Join ChooseWork for the next Work Incentive Seminar Event (WISE) webinar on February 24 at 3 p.m. ET to learn more apprenticeships, working for the federal government, and how Ticket to Work can help you advance your job search.

REGISTER

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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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