Homepage | Forward to a Friend | Make a Donation |
|
eLetter #927 | July 23, 2021 |
|
|
Sunday Sitdown
FACEBOOK LIVE: July 25, 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
|
|
The 20%: A Virtual Support Group for Males Living with Scleroderma
ZOOM: July 28, 2021; 7 p.m. - 8 p.m. Eastern Time Topic: Pulmonary Fibrosis: Facts, Causes and Treatments
To support the men with scleroderma in our community, the Michigan Chapter is hosting a virtual support group series just for you. Join the July 28 virtual group from 7 to 8 p.m. to discuss pulmonary fibrosis symptoms, risk factors, possible treatments, and more. The group will also review helpful tips and reflective questions, leaving time to have all of your questions answered.
REGISTER
|
|
Needs Accommodations for Work?
WEBINAR: July 28, 3 p.m. Eastern Time
This month marks the 31st anniversary of the signing of the Americans with Disabilities Act (ADA) that prohibits discrimination based on disability in many areas including employment. Social Security’s Ticket to Work program and the Northeast ADA Center are celebrating disability inclusion in the workplace by sharing resources on reasonable accommodations for work. Join us July 28 at 3 pm EDT for the next WISE webinar to learn how job accommodations and Work Incentives can provide the supports and services you need to find and maintain employment.
REGISTER
|
|
Parents of Children with Scleroderma Support Group
ZOOM: August 4, 2021; 7:30 p.m. - 9 p.m. Eastern Time Topic: Tips for Going Back to School
Returning to school can be challenging for any child. But it can be especially hard when your child has scleroderma and our world is recovering from a pandemic. Join us for an online support group on August 4 from 7:30 to 9 p.m. to find tips for a smooth and fun transition. We’ll start with welcome remarks and an opening icebreaker, move on to an educational session with helpful tips, and end with a closing mindful moment. Register now and find support and hope in the community.
REGISTER
|
|
Health Advocacy Summit
VIRTUAL: August 7 & 8; 11 a.m. - 5 p.m. Eastern Time
Health Advocacy Summit (HAS) will host its 2021 annual summit virtually. Selma Blair sets the scene with opening comments to two days of workshops that range from global health policy to advocating for your future and media representation of chronic illness, and much more. Founded in 2016 by Sneha Dave, HAS is run entirely by young adults with chronic medical disabilities.
REGISTER
|
Advertisement |
|
|
|
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.
REGISTER
|
|
World Lung Day - September 25
World Lung Day (WLD), September 25, is a day for lung health advocacy and action. It's an opportunity for us all to unite and promote better lung health globally. The Scleroderma Foundation is proud to be a partner in World Lung Day. The theme this year is "Care for Your Lungs." Say no to tobacco, protect them through vaccination, breathe clean air, and take regular physical exercise.
LEARN MORE
|
|
9th PeDRA Annual Conference
The Pediatric Dermatology Research Alliance (PeDRA) will hold its 9th annual conference virtually October 14-15. Free registration is available to all patient stakeholders until September 20, after which there will be a $15 fee. This applies to patients and parents as well as organizational staff and leadership. To register for free, follow this link and use the “Community Early Registration” category.
LEARN MORE
|
|
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 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
|
Advertisement |
|
|
|
|
|
|
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.
|
|
|