June 29 is World Scleroderma Day

World Scleroderma Day is a time to speak up, speak out, and spread the word about scleroderma to help raise awareness and find a cure.

Visit the Foundation's social media sites and share and retweet our awareness messages; and please include #SclerodermaAwareness in your posts.

FACEBOOK • TWITTER • INSTAGRAM

Whitfield is Main Stage Speaker at 2021 Virtual National Scleroderma Conference

CONNECT & THRIVE TOGETHER
Saturday, July 17, 12 p.m. - 8:30 p.m.
Sunday, July 18, 12 p.m. - 5:15 p.m.

Michael L. Whitfield, Ph.D., is the Main Stage speaker at the 2021 virtual National Scleroderma Conference. He will discuss his research to improve understanding of scleroderma and cancer pathogenesis and developing novel methods for diagnosis to aid treatment decisions. His investigation is conducted at his Whitfield Laboratory, Geisel School of Medicine, Dartmouth University, where he is chair and professor of biomedical data science and professor of molecular and systems biology. Whitfield earned his doctoral degree in 1999 at the University of North Carolina at Chapel Hill and did post-doctoral work at Stanford University in 2003. 

Register today (rates increase July 9):

• Person Living with Scleroderma $30
• General Admission $50
• Business/Academia $125

Members receive a 29% discount code. scleroderma.org/becomeamember.

We are grateful for our generous sponsors:
Presenting Sponsor, Boehringer Ingelheim
Gold Sponsor, Janssen Pharmaceutical Companies of Johnson & Johnson
Corporate Partner, Talaris Therapeutics
Partners, Horizon Therapeutics and Genentech

Black and Rare: Scleroderma in the African-American Community

WEBINAR: Tuesday, June 29, 2021, 1 - 2 p.m. Eastern Time

Join the Rare Disease Diversity Coalition for a panel discussion on "Black & Rare: Scleroderma in the African-American Community." Presented by the Black Women’s Health Imperative’s (BWHI) Rare Disease Diversity Coalition (RDDC), the webinar features experts and individuals who have scleroderma, who will unpack the clinical knowledge gathered around scleroderma, how the disease affects the African-American community, and ways to mobilize stakeholders to ensure that Black patients get the best treatment and care available. Speakers:

• Virginia Steen, M.D., Chair, Medical & Scientific Advisory Board, Scleroderma Foundation
• Francesco Boin, M.D., Cedars-Sinai Medical Center
• Christopher S. King, M.D., Inova Fairafax Hospital
• Robert J. Riggs, C.E.O., Scleroderma Foundation
• Vanessa Fields, Person with Scleroderma
• Demeshia "Demi" Montgomery, Patient Advocate
• Adrianna Hopkins, Anchor, WJLA-TV (Moderator)

REGISTER by June 28

Nutritional Tips & Strategies

BIPOC Support Group
ZOOM: Sunday, July 11, 2021; 4 p.m. Eastern Time

Please join the Scleroderma Foundation BIPOC Support Group when guest speaker Susan Nyanzi, Dr.P.H., M.C.H.E.S., A.C.S.M., F.R.S.P.H., will discuss nutritional tips and strategies for individuals living with scleroderma. Dr. Nyanzi graduated from Loma Linda University School of Public Health with a Doctorate in Public Health with a sub-specialty in chronic disease management. As a public health professional, Dr. Nyanzi specializes in integrated lifestyle counseling for the prevention and management of chronic degenerative disorders such as scleroderma, diabetes, heart disease and rheumatoid arthritis. She additionally consults with individuals who have scleroderma on how to best manage their disease through nutrition and physical activity. As a person with scleroderma, Dr. Nyanzi is board member of the Foundation's Southern California Chapter. She has presented on scleroderma at local and national conferences, seminars, and support groups.

REGISTER

Research Study to Evaluate an Online Fatigue Intervention Program

Researchers from the University of New Mexico seek participants for a study to evaluate an online fatigue intervention program for adults. To participate, be a U.S. resident, 18 or older, have systemic sclerosis (SSc, systemic scleroderma). Study involves attending and participating in a 1½ hour virtual meeting once a week for 6 weeks, completing questionnaires at the start and end of study, and an interview at the conclusion. Compensation is offered.

CONTACT: Janet Poole, Ph.D., O.T.R./L., jpoole@salud.unm.edu, (505) 272-8276, or Kristine Carandang, O.T.R./L., carandangkm@gmail.com, (626) 722-8761.

Seminario web en español del Día Mundial de la Esclerodermia

ZOOM: Martes 29 de Junio a las 11 a.m. (Hore Miami)

Únase al primer seminario web en Español en conmemoración del Día Mundial de la Esclerodermia y organizado por el Grupo de Apoyo Bilingüe de la Fundación Esclerodermia, la Asociación Española de Esclerodermia, Esclerosalud - Esclerodermia y Raynaud Argentina, la Asociación Colombiana de Esclerodermia y la Asociación Mexicana de Orientación, Apoyo y lucha contra la esclerodermia. Presione el siguiente enlace para registrarse al evento:

ZOOM

Sunday Sitdown

FACEBOOK LIVE: June 27, 1 p.m. Eastern Time (12 p.m. CT, 11 a.m. MT, 10 a.m. PT)

Join the Ohio Chapter for Sunday Sitdowns on the last Sunday of every month at 1 p.m. Eastern Time via Facebook Live. This is a time to connect with others who live with the challenges caused by scleroderma.

Please note, given the open, unsecure nature of Facebook, do not share private, personal information during this conversation.

WATCH

Para Información Sobre COVID-19

El Comité Directivo del Consejo Médico y Científico Asesor de la Fundación Esclerodermia está de acuerdo con las recomendaciones de los CDC para aquellos que tienen una afección o toman medicamentos que debilitan el sistema inmunitario. Estudios recientes sugieren que para las personas inmunocomprometidas, en particular las que toman micofenolato mofetilo, la vacuna puede tener una eficacia inferior al 50%. Por ello, ponen énfasis en recomendar que las personas diagnosticadas con esclerodermia/esclerosis sistémica que reciban terapias inmunosupresoras como el micofenolato mofetilo y el rituximab, así como quienes convivan con ellas, sigan utilizando mascarillas, practiquen el distanciamiento social, eviten las aglomeraciones y los espacios interiores poco ventilados y sean diligentes en el lavado frecuente de manos.

Lee Mas

Important Updates Regarding Mask Wearing for Immunocompromised Individuals with SSc

Updated May 17, 2021

With the recent CDC announcement of new guidelines on mask wearing, the Scleroderma Foundation's Medical & Scientific Advisory Board issued the following statement:

The Scleroderma Foundation’s MSAB Leadership Committee agrees with the CDC guidelines for those who have a condition or are on medications that weaken the immune system. Recent studies suggest that immunocomprimised people, particularly those on mycophenolate mofetil, may have had less than 50% effectiveness of the vaccine. Thus, they strongly recommend that people diagnosed with scleroderma/systemic sclerosis who are receiving immunosuppressive therapies such as mycophenolate mofetil and rituximab and those who live with them should continue to wear face masks, practice social distancing, avoid crowds and poorly ventilated indoor spaces, and use diligence in frequent hand washing.

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

Thank You to Our Conference Sponsors!

The Scleroderma Foundation is grateful for the generous support of our sponsors for 2021 virtual National Scleroderma Conference.

Presenting Sponsor: Boehringer Ingelheim
Gold Sponsor: Janssen Pharmaceutical Companies of Johnson & Johnson
Corporate Partner: Talaris Therapeutics
 Partners: Horizon Therapeutics and Genentech

Learn about the July 17 & 18 National Scleroderma Conference

Chronic Disease Day Signature Livestream Event

FACEBOOK: Tuesday, July 13, 1 p.m. Eastern Time

Mark your calendars for the signature Chronic Disease Day livestream event featuring policymakers, experts, and community advocates discussing issues impacting the chronic disease community post COVID-19. Hear special remarks from:

• Rep. Lauren Underwood (D-IL), U.S. Rep.
• Clorinda Walley, President of Good Days
• Julia Savacool, HealthCentral

REGISTER

Platinum Corporate Sponsor

Gold Corporate Sponsor

Silver Corporate Sponsor