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| eLetter #925 | July 9, 2021 |
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Get Access to All Recordings of the 2021 Virtual National Scleroderma Conference
CONNECT & THRIVE TOGETHER - Register Today!
Saturday, July 17, 12 p.m. - 8:30 p.m.
Sunday, July 18, 12 p.m. - 5:15 p.m.
When you register for the 2021 virtual National Scleroderma Conference, you lock in 30 days access to recordings of all educational sessions and presentations. If you can't attend on the 17th or 18th, register today and watch later.
Members receive a 29% discount code. scleroderma.org/becomeamember.
Already registered? You'll receive an email with login access on the 14th of July.
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.
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Schedule at a Glance for the 2021 Virtual National Scleroderma Conference
The schedule at a glance for the 2021 virtual National Scleroderma Conference, July 17 and 18, is now on the conference website and is available as a PDF for download.
Plan your conference day. Review educational session times, titles, and speakers. Find the best time for you to visit the exhibit hall and the scientific poster hall. Don't forget to share your conference experience on social media with #SclerodermaThrive!
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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.
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July 10 is Chronic Disease Day
The Scleroderma Foundation is persistent in our fight against scleroderma through our mission to provide support, education, and research.
Will you support our efforts on July 10?
DONATE
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SYNC: Scleroderma Young Adults Needing Connection
ZOOM: Friday, August 13 at 7:00 p.m. Eastern Time
SYNC, Scleroderma Young Adults Needing Connection, invites you to join their August meeting for a general discussion among young adults between the ages of 18 and 42 looking to connect with other individuals affected with scleroderma. For questions, please email Amy Gietzen, ageitzen@scleroderma.org, or Natalie Puccio, nataliepuccio18@gmail.com.
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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
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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 immunocompromised 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
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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.
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