Check Out Our Latest Action Alert! 

In our newest Action Alert, we share how our members, volunteers, and friends can join us in urging our elected officials to support strong federal funding for scleroderma research. Click here for an easy way to send letters to your Senators and ask them to support the inclusion of scleroderma in the Department of Defense PRMRP’s (Peer-Reviewed Medical Research Program’s) eligible conditions list in FY 2023. The Action Alert will help you learn more about the PRMRP, what’s behind our advocacy funding strategy for FY23, and how your action now can make a difference.

The time to act is limited, so we ask you to reach out to your Senators by Friday, May 20th. And please let your friends and relatives know that they, too, can support scleroderma research by using the Action Alert to contact the Senators in their own states!

Research Grant Awards Highlight 

The 2022 research grant cycle set a record for the number of applications received and the amount of funds awarded. The Debra Lurvey Memorial Research Grant Award was created in June of 2021 and is presented every two years to an established researcher focusing on scleroderma-related lung research. The inaugural recipient of the Debra Lurvey Memorial Research Grant Award is:

Robert Lafyatis, MD
University of Pittsburgh
Established Investigator Award

Research Topic: Cooperative Transcription Factor Regulation of Myofibroblast Differentiation in Scleroderma-Associated Interstitial Lung Disease

You can learn more about our research grant awards and recipients here.

BIPOC Support Group Meeting

VIRTUAL: May 15, 2022; 4 p.m. Eastern

Learn about important topics such as wills, power of attorney, health proxy, and Social Security Disability filing from Mike Levengood, Attorney at Law, during the BIPOC support group's May 15 virtual meeting.

REGISTER 

Buffalo and Rochester Support Group Meeting

VIRTUAL: May 14, 2022; 1 p.m. Eastern

The Rochester Support Group invites you to their Move to the Beat of Your Own Body event with Ms. Sarah Otis on Saturday, May 14, 2022, from 1-3 p.m. Eastern.  This is a virtual interactive activity. 

REGISTER 

Pulmonary Hypertension in Systemic Sclerosis Webinar

VIRTUAL: May 4, 2022; 3 - 4 p.m. Eastern

Learn essential information about pulmonary hypertension in systemic sclerosis during a discussion with Dr. Soumya Chatterjee, Rheumatology Education Program Director, Cleveland Clinic, Ohio, organized by the National Scleroderma Foundation. The discussion will introduce how to identify the signs and symptoms of pulmonary arterial hypertension (PAH). What exactly is PAH? How is it diagnosed? How is it treated? We will explore these topics and much more.

REGISTER 

A special thanks to Janssen Pharmaceutical for sponsoring this event.

National Volunteer Month

In recognition of National Volunteer Month, we would like to highlight another one of our dedicated volunteers. We are honored to have Marilyn Sibley of the Tri-State Chapter as a strong and dedicated supporter of our foundation for the past 20 years. While she has been an essential component of our community, she attributes her hard work to her fellow volunteers, who continuously support her. We thank you, Marilyn, and all volunteers, for your tireless work to help individuals with scleroderma.

Join A Stepping Out to Cure Scleroderma Walk Near You

Stepping Out to Cure Scleroderma walks give you a way to get involved and help advance our mission. By joining a walk, you help us take one step closer to finding a cure for scleroderma. Don't miss this fun and exciting opportunity to make a difference in the life of someone affected by this disease! Click here to find and register for a walk near you. 

Thank you to our Champion Sponsors!

Mogil's Mobcast 

In the latest episode of Mogil's Mobcast, Anne speaks with guest Dr. Brett Thombs, the founder and director of the Scleroderma Patient-centered Intervention Network (SPIN). Dr. Thombs operates SPIN in collaboration with over 150 investigators, health care providers, patients, and patient advocates from 8 countries and 50 scleroderma expert centers. The program's philosophy is to help individuals with scleroderma live better with the hand that they have been dealt. This is done through research, data, tests, cohorts, and programs. To learn more about Dr. Thombs and SPIN, listen to the podcast.

LISTEN

Platinum 

Silver 

Partner