Connect and Thrive Together!

Virtual National Scleroderma Conference: July 17‑18, 2021

We are pleased to announce the theme for the 2021 virtual National Scleroderma Conference, "Connect and Thrive Together." This theme reflects one of the most important aspects of the conference, when people affected by scleroderma connect, they create a powerful energy that helps them thrive throughout the year.

You can connect and thrive during two days of workshops, panels, and speakers, Saturday and Sunday, July 17 and 18. Registration will open soon. Program information will follow. Stay in the know by subscribing to Conference eAlerts.

CONFERENCE eALERTS

Jonathan A. Garlick, D.D.S., Ph.D.

2021 Research Grant Awards

Mark Flapan Award, Jonathan A. Garlick, D.D.S., Ph.D., Tufts University School of Dental Medicine

The Mark Flapan Award, presented annually to a scleroderma researcher whose proposal is ranked highly by the Peer Review Committee, is named in honor of the late psychologist, who had scleroderma and contributed greatly to the Foundation’s scleroderma publications and literature.

The 2021 Mark Flapan awardee is Jonathan A. Garlick, D.D.S., Ph.D., Tufts University School of Dental Medicine. His project is titled "Functional Analysis of Cellular Diversity and Cell-Cell Interactions in Scleroderma 3D Skin-Like Tissues." Learn more about Dr. Garlick's project and the other 2021 research grant recipients on the Foundation's website.

RESEARCH

The 20%: A Virtual Support Group for Males Living with Scleroderma

Scleroderma diagnoses are less common among men. In fact, only 20 percent of those who have scleroderma are males. If you, a friend or loved one falls into this category, the Scleroderma Foundation is here to support you.

We’re designing a support group especially for males with scleroderma. In it, you’ll learn scleroderma tips and resources and find support from others in your position. We’ve planned out a variety of topics, but we’d love to get your input on topic options, support group timing and more. If you’re a male with scleroderma, please complete our survey to help us decide the vision, structure and logistics of the group. Results are anonymous and will be shared with members during the first group meeting.

Complete the survey and keep an eye out for more details.

SURVEY

Now is the Time to Share Your Story

Now is the time to share your scleroderma story with your U.S. Senators before the fiscal year 2022 budget is submitted. Ask your Senators to work with their colleagues to support $5 million for scleroderma research again. Your voice matters!

You can help advocate for scleroderma research funding if you live in Alabama, Kentucky, Rhode Island, Arkansas, North Dakota, or Montana. Senators from these states are on the Congressional committee that makes these decisions. 

For more information, contact advocacy@scleroderma.org.

Find your Senators' contact information at: SENATE.GOV

El Grupo Bilingüe de Apoyo de Miami (Miami Bilingual Support Group)

ZOOM: Abril 18, 2021, 11 a.m. ET
Terapia Con Ritmo en Pacientes con Esclerodermia

El Grupo Bilingüe de Apoyo de Miami está celebrando su reunión mensual virtual a través de zoom el próximo 18 de abril del 2021 a las 11 a.m. (tiempo de Miami), con la fisioterapeuta Luz Osorio en una sesión de ejercicios respiratorios además de estiramientos para mantenerse ágil y evitar rigidez de las articulaciones.

REGISTRARSE

The Miami Bilingual Support Group is holding its monthly virtual meeting via Zoom on April 18, 2021, at 11 a.m. (Miami time), with physiotherapist Luz Osorio for a session of breathing exercises in addition to stretching to stay agile and avoid joint stiffness.

REGISTER

Metin Akay

Shervin Assassi, M.D., M.S.

Screening for Skin Disease on Your Laptop

New Artificial Neural Network Design Can Differentiate Between Healthy and Diseased Skin

In an April 6, 2021 article, the University of Houston reports "...A new deep neural network architecture that provides early diagnosis of systemic sclerosis (SSc), a rare autoimmune disease marked by hardened or fibrous skin and internal organs. The proposed network, implemented using a standard laptop computer (2.5 GHz Intel Core i7), can immediately differentiate between images of healthy skin and skin with systemic sclerosis."

Metin Akay, the John S. Dunn Endowed Chair Professor of Biomedical Engineering stated “Our preliminary study, intended to show the efficacy of the proposed network architecture, holds promise in the characterization of SSc." The work is published in the IEEE Open Journal of Engineering in Medicine and Biology.

Shervin Assassi, M.D., M.S., of the McGovern Medical School, University of Texas, a frequent presenter at Scleroderma Foundation education programs, said "This is work that we have completed with our colleagues at the University of Houston. It is important to mention that this approach analyzes histology slides (skin biopsy) that can be classified as diseased vs. healthy utilizing machine learning approaches."

READ

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

BIPOC Virtual Scleroderma Support Group

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

The Foundation started the BIPOC Virtual Support Group to address the needs of Black, Indigenous, and People of Color affected by scleroderma. In addition to Marilyn Sibley, Erion Moore, Demi Montgomery, and Jacob Vidal Davila, Sy Fuller and Demetra Newton also serve as facilitators for the group.

Demetra Newton was born and raised in Atlanta, Georgia, where she graduated from West Fulton High and attended Morris Brown College. She has two daughters and is a member of the Scleroderma Foundation Georgia Board of Directors. She is also the support group leader for Newnan/Peachtree City and is a member of the patient advocacy committee. After retiring from the healthcare system with Wellstar Kennestone Hospital in 2007, Demetra has focused on educating herself to help bring awareness to scleroderma.

Syqueeta Fuller was diagnosed with systemic scleroderma in 2004 that progressed into her lungs. In 2017, Syqueeta underwent a double lung transplant at Ronald Reagan UCLA Hospital in Westwood, California. Despite these struggles, Sy has dedicated herself to advocating and increasing awareness and education for the scleroderma community. Sy graduated nursing school and has a passion for helping other.

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

PAH vs. PH: What's the Difference?

Do you know the difference between PH and PAH? It can be confusing, since some people — even health journals and doctors — use PH and PAH interchangeably. Click over to myPHteam to learn what differentiates the two conditions and ways to manage symptoms.

myPHteam

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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