Caregivers Connection 

ZOOM: 10 a.m., Mountain Time, Saturday, Nov. 19

Sara Clement, Southern Colorado Support Group Leader, will host the Caregivers Connection Support Group Meeting on Nov. 19, 2022. All caregivers are welcome to join. To attend, request the Zoom link by sending an email to Gary Keschl, at garykeschl@gmail.com.

The 20%: A Virtual Support Group for Males Living with Scleroderma

ZOOM: 7 p.m., Eastern Time, Wednesday, Nov. 23

Scleroderma diagnoses are less common among males. In fact, only 20% of individuals living with scleroderma are male. We have designed a support group, especially for males with scleroderma. In it, you will learn scleroderma tips and resources and find support from others in your position. Each meeting will focus on a different topic from mental health to intimacy and so much more. The group meets on the fourth Wednesday of the month (with some exceptions) from 7 to 8 p.m., ET.

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A Lasting Mark Foundation

Our friends at A Lasting Mark Foundation would like to spread some holiday cheer and comfort to our pediatric scleroderma community! Learn more about the incredible mission of A Lasting Mark Foundation here. A Lasting Mark Foundation would like to send a Holiday Swag in a Bag to children and teens up to 18 years old living with scleroderma. To receive your special gift, fill out the form here. Please be sure to use the code: Warmwishes. The deadline to order is Dec. 3. Our sincere gratitude goes to A Lasting Mark Foundation for this special gift!

Stem Cell Transplant in Scleroderma

ZOOM: 3 p.m., Eastern Time, Friday, Nov. 18

During this virtual educational session, you will hear from patients who have benefited from stem cell transplants, how the transplant works, and what trials are currently available.

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International Patients Survey on Proton Pump Inhibitors

Doctors with patient input from the World Scleroderma Foundation are conducting a Patient Survey on Proton Pump Inhibitors and need your help. If you have been diagnosed by a healthcare provider with systemic sclerosis and have used or are currently using a PPI, please provide your input at the survey link. The survey is also available at the QR code shown with this news item.

BIPOC (Black, Indigenous, People of Color) Support Group

ZOOM: 4 p.m., Eastern Time, Sunday, Nov. 13

Learn important information about family support during the BIPOC support group's next virtual meeting.

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We Are Hiring!

We're hiring for an executive director in the Rocky Mountain Chapter! Must reside in Colorado or Utah. Learn more about this great opportunity to serve the scleroderma community at the link below.

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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. 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.

Working from Home with Ticket to Work

ZOOM: 3-4:30 p.m., Eastern Time, Wednesday, Nov. 16

Want to work from home? A Ticket to Work service provider can help with that! Join the WISE webinar at 3 p.m., ET, on Wednesday, Nov. 16, to learn how Social Security’s Ticket to Work program can support you on your path to employment.

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Mogil's Mobcast with Amy Gietzen

On the recent episode of Mogil's Mobcast, Ann speaks with Amy Gietzen, who is an individual living with scleroderma, a support group leader and a scleroderma advocate. Amy was diagnosed with scleroderma at the age of 19. She has been a strong advocate by sharing her story with the scleroderma community. Amy started a group called Scleroderma Super Stars for patients ages 18-40 on Inspire, the world's largest and fastest growing online health community. She also started a virtual meetup group called SYNC, Young Adults Needing Connections. Listen now on Apple Podcasts.

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