Kids Get Scleroderma, Too! Virtual Conference

VIRTUAL: October 22, 2022

Sign up now for the 2022 Kids Get Scleroderma, Too! Conference (KGS2). This virtual education conference is geared toward parents, guardians, and juveniles affected by scleroderma. Stay tuned for more information on conference programming!

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Please help us track our progress toward our FY 2023 goals!

Please take a quick pulse survey at the link. It’s just ten questions and only takes a couple of minutes to complete. Your feedback will help us shape the future of the Foundation. We appreciate your feedback!

Caregivers Connection Support Group

ZOOM: October 15, 2022; 10 a.m. Mountain

Sara Clement, Southern Colorado Support Group Leader, will be hosting the Caregivers Connection Support Group Meeting on October 15, 2022. All caregivers are welcome to join. To attend, request the Zoom link by sending an email to Sara, at sarc56@gmail.com.

Combined Federal Campaign (CFC)

CFC pledges make a real and meaningful difference to countless individuals and families in the scleroderma community.

If you are a federal employee, military personnel, or retiree, you can change lives by giving through the CFC this year. Simply visit the CFC’s online pledge portal and choose #10089 to support our mission.

Thank you so much for your generosity!

Delaware Valley Education Event

ZOOM: November 2, 2022; 7 p.m. Eastern

The Delaware Valley Chapter and the Central PA Support Group are pleased to present a presentation by Dr. Fredrick Wigley, Director of the Johns Hopkins Scleroderma Center, on November 2 at 7 p.m. Eastern. Dr. Wigley founded the Johns Hopkins Scleroderma Center with Robert A. Wise, M.D., of the Johns Hopkins Division of Pulmonary Medicine. Dr. Wigley has been honored with two American College of Rheumatology awards over the past couple of years. He received the ACR Distinguished Clinician Scholar Award in 2009 and the AC Masters Award in 2011. The presentation is free.

To attend the virtual Zoom event, please contact JoAnne LaPergola, Delaware Valley Executive Director at 609-707-8651 or jlapergola@scleroderma.org or email Dan Caruso at sclerocentralpa@yahoo.com.

Heartland Chapter 10th Annual Sclero-What? Education Day

ZOOM: October 15, 2022; 9 a.m. Central

Are you interested in learning about treating and managing scleroderma? The Heartland Chapter will host their 10th Annual Sclero-What? Education Day on October 15, 2022, which will cover topics such as  "New treatments for patients with SSc," "Gentle yoga and yogic breathing for symptom management in scleroderma," and "A Naturopathic Approach." There will also be over $800 in giveaways between speakers.

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National Scleroderma Foundation Minnesota Chapter Fall Mind Body Conference

ZOOM: October 15, 2022; 9 a.m. Central

The mind body connection can play an important role in autoimmune health. If you are interested in learning more about the mind body connection, sign up for the Mind Body Virtual Conference on October 15. The conference will cover topics such as "The Happiness Practice," "Research and Reasons for Mindfulness," and "Mind-Gut Connection." To learn more and sign up, visit the link!

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Study Tests Immunotherapy in People with Cancer and Autoimmune Diseases

If you are an individual living with scleroderma and cancer, you might be eligible to take part in a new study focused on immunotherapy that is sponsored by the National Cancer Institute. This National Cancer Institute clinical trial is testing an immunotherapy drug (an anti-PD1 inhibitor, called nivolumab or Opdivo) in patients who have both cancer and an autoimmune disease, such as scleroderma. 

The trial’s scientific evidence could help develop new treatments for patients with scleroderma and help doctors better manage and prevent side effects from promising new treatments that are given to patients with autoimmune conditions who are otherwise good candidates for immune-based treatments for their cancer. The trials will take place in centers across the country, which can be seen in the link below. For participants at the trial locations in major cancer centers throughout the United States and at Princess Margaret in Toronto, Canada, the study drug will come at no cost, and treatment should be covered by insurance. Visit this link to learn more about the trial.

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Fathers with Scleroderma Needed for Survey Research Study on Parenting

Researchers from the University of New Mexico are seeking participants for a study exploring the impact of symptoms, such as pain and fatigue, on parenting in fathers who have systemic sclerosis (scleroderma). Fathers with scleroderma who have children 18 years and younger living with them may be eligible to participate in the survey study. This study was approved by the UNM Human Research Review Committee (HRRC 21-209). For more information about the study and the eligibility requirements, please contact Janet Poole PhD, OTR/L, at jpoole@salud.unm.edu or (505) 272-8276.

Ticket to Work Webinar

Curious about how working will affect your Medicare or Medicaid benefits? Join the Work Incentive Seminar Event (WISE) webinar on October 26 at 3 p.m. Eastern to learn about healthcare and the path to employment. Learn more and sign up for the October WISE webinar at the link.

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Mogil's Mobcast with Rachel Lando

On Episode 32 of Mogil's Mobcast, Ann talks with Rachel Lando about her health journey living with scleroderma and her passion for teaching individuals with disabilities how to move. Visit the link below to learn more about Rachel!

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