Forgot password?
   Please leave this field empty
Support Education Research
Please leave this field empty
Scleroderma Foundation
Homepage | Forward to a Friend | Make a Donation
eletter banner.jpg
eLetter #895 | December 11, 2020  

Trophy Star

Maureen Mayes M.D.

Recognition for Outstanding Service

Every year at the National Patient Education Conference, the Scleroderma Foundation takes time to recognize individuals and chapters for their outstanding service during the preceding year. Unfortunately, the pandemic removed that opportunity to thank awardees in person, and so we present to you here another 2020 National Award.

Lifetime Achievement Award
The Scleroderma Foundation’s 2020 Lifetime Achievement Award is presented to Maureen D. Mayes, M.D., M.P.H. A professor of Medicine at the University of Texas, McGovern Medical School, Dr. Mayes is the founder and director of the Scleroderma Clinical and Research Program, where she pursues her primary clinical interest in the diagnosis and treatment of scleroderma. Dr. Mayes also conducts basic science research on the genetics of scleroderma, and clinical treatment trials to find better therapies. She has published over 250 articles and reviews in the medical literature, and many people living with scleroderma know her as the author of the definitive “The Scleroderma Book: A Guide for Patients and Families.”

For more than 25 years, Dr. Mayes, has actively volunteered on behalf of patient advocacy organizations. She was a Board member of the United Scleroderma Foundation in the early 1990s and has gone on to serve the Scleroderma Foundation as a member of its Medical & Scientific Advisory Board for the past 22 years. Her long history of service to the Foundation as a trusted advisor to chapter leadership and the national organization, as well as her commitment to education, clinical care, and scientific discovery are truly exemplary. Congratulations, Dr. Mayes, on being recognized with the Scleroderma Foundation’s 2020 Lifetime Achievement Award.

AWARDS

 Lap Top Little Guy

Young Adult Panel: Managing Your Disabilities and Knowing Your Physical and Emotional Limits

WEBINAR: Saturday, December 19, 2020; 7 p.m. - 8:30 p.m. Eastern (6 p.m. CT, 5 p.m. MT, 4 p.m. PT)

Join a panel of young adults in discussing topics such as managing your disabilities and knowing your physical and emotional limits. The panel also talks about what it feels like to be treated poorly or differently because you may not look "sick."

REGISTER

emotional help

University of Michigan Ginsberg Center

What are the Barriers that Confront You in Accessing Mental Health Care?

The Scleroderma Foundation is conducting a survey to help answer the following questions:

  • What are barriers that people with scleroderma face in accessing mental health services?
  • What mental-health related services are wanted that the Scleroderma Foundation can provide?

Your responses will be used to help guide the Scleroderma Foundation in creating mental health resources, programs, and services for those persons living with scleroderma in the United States. We ask that only persons living with scleroderma complete this survey and only do so once so we can obtain accurate data.

The survey should only take seven minutes and your responses are completely anonymous. Unless you choose to enter your name and email address, only your responses, the date, and time will be collected. The survey will close on December 31, 2020. Questions marked with an asterisk (*) are required. Only individuals over the age of 18 may take this survey. If you have any questions about the survey, please contact Laura Dyas: LDyas@scleroderma.org.

SURVEY

Virtual Support Group

Virtual Scleroderma Support Group

ONLINE: Saturday, December 12, 2020; 10 a.m. - 12 p.m. Pacific Time

The Scleroderma Foundation Oregon Chapter welcomes you to join their next virtual support group meeting, hosted on Zoom. You can join for free via video, audio, or typing text. Dress in your favorite Christmas sweater or your holiday best (or your pajamas!) and let's have a great discussion! The meeting room will open 15 minutes early and the meeting will officially begin at 10 a.m. Pacific Time. Oregon Chapter support groups are always open to family members, caregivers, and medical professionals.

REQUEST ZOOM LINK

SYNC Meet Up Young Adults Tri-State December 2020

SYNC Meet Up

ONLINE: Friday, December 18, 2020; 4 p.m. Pacific Time (5 p.m. Mountain, 6 p.m. Central, 7 p.m. Eastern)

Young adults between the ages of 18 and 42 are invited to attend the SYNC Meet Up, a virtual meeting hosted by the Scleroderma Young Adults Needing Connection (SYNC) group. The group meets monthly.

To request meeting details, send an email to agietzen@scleroderma.org or to sdtristate@sclerodermatristate.org.

Advertisement
Mitsubishi Tenabe Decode Ad 2020
 

SF Logo Standard JPG

 

MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

From the Scleroderma Foundation's Medical & Scientific Advisory Board Leadership Committee
Reviewed July 1

The Foundation's Medical & Scientific Advisory Board (MSAB) Leadership Committee fully endorses recent recommendation by the American College of Rheumatology (ACR) in their “COVID-19 Clinical Guidance for Patients with Rheumatic Diseases” draft summary, which states that individuals who have rheumatic diseases, including scleroderma, who test positive for COVID-19 should temporarily discontinue sulfasalazine, methotrexate, leflunomide, immunosuppressants, non-IL-6 biologics and JAK inhibitors. The ACR COVID-19 Clinical Guidance Task Force also recommends that those who have confirmed COVID-19 may continue with anti-malarial therapies—namely hydroxychloroquine and chloroquine—and, in select circumstances, IL-6 inhibitors.

Information and recommendations from the Foundation's MSAB regarding COVID-19 and scleroderma are posted at www.scleroderma.org/covid19. This "living document" was most recently reviewed on July 1. Please check it from time to time for additional updates.

COVID‑19

 HealthCare.gov logo

If You Need Health Insurance, Don't Miss the December 15 Deadline to Apply

The deadline to apply for health insurance via HealthCare.gov is December 15, 2020. 

Visit the HealthCare.gov website to review options and start a new plan, or renew or change an existing plan. 

HEALTHCARE.GOV

myPHteam logo

In Case You Missed It

Q&A topic on myPHteam: "Anyone On Medication To Help With Breathing?" 

Click over to join myPHteam and share your experience.

myPHteam

Ticket to Work - WISE

Choose Work!

WEBINAR: December 16, 2020, 3 p.m. Eastern Time

We’ve all been told that when you’re looking for a job, it’s important to keep a positive attitude. 

However, depending on where you live, winter can affect your outlook. 

Join ChooseWork for the next webinar, December 16 at 3 p.m. ET, to learn how Ticket to Work program service providers can help you battle the winter blues during your job search.

WISE WEBINAR

2019 DFW Stomp Out Scleroderma - Briana

Stomp Out Scleroderma!

During this season of giving and giving thanks, we hope you will consider supporting the Scleroderma Foundation with an end of calendar year gift.

Don't forget there is a CARES Act enhanced charitable giving incentive for the 2020 calendar year.*

Make your charitable donation here.


*The Scleroderma Foundation recommends consulting a qualified financial advisor regarding charitable giving standards and regulations.

 Advertisement
Kadmon Trial 2020 kadmonscleroderma.com
 
 
 
QUICK LINKS
 
Advocacy
Contact Us
Become a Member
About Scleroderma
Calendar of Events
Online Chat
Store
Make a Gift
Home
 
SOCIAL MEDIA
 
Facebook
Twitter
Instagram
YouTube
 
 
SPONSORS
 
Diamond National Sponsors

Actelion Plain

Boehringer Ingelheim Plain

 

Corporate Sponsors

Corbus Pharmaceuticals Logo

Horizon Therapeutics logo

 

 

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.

Powered by Blackbaud  Unsubscribe | Visit our web site | Contact Us | Donate
300 Rosewood Drive, Suite 105, Danvers, MA 01923 tel: 800-722-HOPE (4673)
© 2021 All rights reserved.