Thank You, Volunteers!

Martin Luther King, Jr. said, “Everybody can be great. Because anybody can serve…You only need a heart full of grace. A soul generated by love.”

These words are especially meaningful as we celebrate Volunteer Appreciation Month throughout April. The Scleroderma Foundation—indeed, the worldwide scleroderma community—is strong, vibrant, engaged, and supportive because of volunteers. In fact, many people with scleroderma volunteer their time by sharing their journeys living with this disease. They do so to bring help, comfort, and hope to others who face the challenges of a scleroderma diagnosis.

We salute all of our volunteers at every level of the organization for their tremendous gifts of time, talent, and treasure, which are the engines of hope and caring that propel the scleroderma community forward. On behalf of the National Board of Directors and the National Office team, thank you for all that you do!

Sincerely,
Robert J. Riggs, CEO
Scleroderma Foundation

VOLUNTEER

Ido Amit, Ph.D.

2021 Research Grant Awards

The Marta Marx Fund for the Eradication of Scleroderma, Ido Amit, Ph.D., Weizmann Institute of Science

Each year, the highest scoring research proposal receives funding in the name of the Marta Marx Fund for the Eradication of Scleroderma, which was established in 2000 by the late Rudolph Juhl, a New York stockbroker, in honor of his sister, Marta Marx. The 2021 Marta Marx awardee is Ido Amit, Ph.D. of Weizmann Institute of Science. His project is titled "Comprehensive Single Cell Analysis of Skin and Blood of Scleroderma Patients: Towards Identification of Disease Molecular Mechanisms, Prognostic Biomarkers and Potential Therapeutic Targets." Learn more about Dr. Amit's project and the other 2021 research grant recipients on the Foundation's website.

RESEARCH

ATS PAR Check-Up: Conversations with Lung Disease Patients, Health Disparities Edition

WEBINAR: Tuesday, April 20, 3-4 p.m. Eastern Time

The Public Advisory Roundtable (PAR) of the American Thoracic Society (ATS) presents a live webinar in the series “ATS PAR Check-Up: Conversations with Lung Disease Patients.” Please join us to hear from Terry, a cystic fibrosis patient, and his wife Michele about their journey to his CF diagnosis, which occurred later in his life. They will discuss some of their personal experiences with disparities and deficiencies in the health care system while trying to obtain care for Terry. Others on the webinar are prominent ATS member Linda Chlan, Ph.D., R.N., associate dean of nursing at the Mayo Clinic College of Medicine and Science; Michele Manion, executive director of the PCD Foundation; and Siri Vaeth, executive director of the Cystic Fibrosis Research Institute.

REGISTER

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. Eastern Time. To receive the meeting link, send an email to group facilitator Amy Gietzen.

LINK

Demi Montgomery

Jacob Vidal Davila

Join the BIPOC Virtual Scleroderma Support Group

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

In addition to Marilyn Sibley and Erion Moore, Demi Montgoery and Jacob Vidal Davila serve as faciliators for the BIPOC Virtual Scleroderma Support Group.

Demi Montgomery is a member of the Ohio Chapter’s Board of Directors and the National Advocacy Committee, and is the driving force behind State Bill 133. She resides in Dayton, Ohio, where she serves on the state awareness, advocacy, and social media committees. In 2020, Demi received the Foundation's Advocate of the Year Award.

Jacob Vidal Davila is a member of the Foundation's Texas Bluebonnet Chapter Board of Directors, and serves as Director of Advocacy and Public Awareness. He's also chair of the Youth/Young Adult Committee, and is part of the Support Groups and Social Media Committees. Jacob resides in Humble, Texas, where he is leader of the Houston/Texas Scleroderma Support Group and Houston Stepping Out Walk. In 2019, Jacob was honored with the Outstanding National Advocate Award.

REGISTER

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 Time.

REGISTER

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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