Registration to Remain Open During 2021 Conference Weekend

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.

We encourage you to register today so that you can take full advantage of the conference experience, but to make it even more convenient to participate, registration will stay open until Sunday the 18th at 4 p.m. Eastern Time. Remember that registered attendees lock in 30 days access to recordings of all educational sessions and presentations.

• Person Living with Scleroderma $36
• General Admission $70
• Business/Academia $175

Download the Program at a Glance

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

In addition to access to educational sessions, the conference includes a scientific poster hall with presentations by researchers, who may ask questions. And, there is an exhibit hall with sponsors and businesses that have services of interest to people with scleroderma. The conference also includes a "Selfie Booth" where you can take a pic and post it to the "community" wall and on your social media account. Tag the Foundation on Facebook, Twitter, and Instagram posts, and be sure to include #SclerodermaThrive.

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.

Jeanne Theisen Joins National Board

Jeanne Theisen of Long Beach, California, was recently elected to the Scleroderma Foundation’s national board of directors. He business acumen and experience promise to be a great asset for the Foundation. Jeanne is National Sales Director for B Squared Design & Printing. A sales leader throughout her career, Jeanne’s previous positions include business development consultant with Manetu, Inc., and 11 years at Hewlett Packard, first as Global Account Executive for Enterprise Accounts and then as Northeast Sales Manager. Before that, she held positions at IKON Office Solutions and Xerox Corporation. Jeanne is a graduate of Rutgers University. See the full Board list online.

SCLERODEMA.ORG

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.

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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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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.

myPHteam

Do you ever feel dizzy or light-headed, especially when exercising? Although there are many causes of these symptoms, they can be some of the major symptoms of pulmonary hypertension. Learn more about what to be aware of when it comes to dizziness and light-headedness via this resource on myPHteam.

myPHteam

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.

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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

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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