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

ZOOM: August 24, 2022; 7 p.m. EST

Scleroderma diagnoses are less common amongst 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, we 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. Eastern.

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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 for a new study sponsored by the National Cancer Institute focused on immunotherapy.

The National Cancer Institute has sponsored a clinical trial to test 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 will include 260 people with severe cancer and an autoimmune disease, and 36 spots are reserved for individuals with advanced cancer and scleroderma. The researchers hope that they will learn more about how to treat patients with cancer and rare conditions, like scleroderma. The 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 treatment of their cancer.

There are centers across the country, which can be seen in the link below. The trial is also open at the NIH Clinical Center in Bethesda, Maryland. If patients enroll on a trial at the NIH’s Bethesda location, trial participants can be flown back and forth for treatment and receive a hotel voucher to assist with any overnight stays. There is no cost for the medication or medical care provided at the Bethesda location. (In fact, the NIH Clinical Center in Bethesda doesn’t even have a billing department). However the trial is also open at major cancer centers throughout the United States and at Princess Margaret in Toronto, Canada. Regardless of location, patients will not have to pay for the study drug at all and treatment should be covered by insurance. Visit the link to learn more about the trial.

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Teens & Parents Support Group

ZOOM: August 27, 2022; 6 p.m. Mountain

Calling all teens looking to connect with other teens living with scleroderma. The Albuquerque support team will have Teen & Parent Support Group meetings each month on the 4th Wednesday via Zoom at 6 p.m. Mountain. The group will be led by Debra Droux, Maria Tafoya, and Jackie Martinez. Email nmsclero@gmail.com or call 505-503-3545 to receive the Zoom meeting information. We ask that a parent or caregiver be present with their teen when the meeting starts.

Kids Get Scleroderma, Too! Virtual Conference

VIRTUAL: October 22, 2022

Save the date 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 registration dates and programming!

Become a Member

For only $25 a year ($35 USD for those living outside of the USA), you can support our mission and gain special access to our quarterly magazine, the Voice, along with a discounted registration fee to our annual National Scleroderma Conference.

Become a member yourself or give the gift of membership to a friend or family member by completing our online membership form or calling us toll-free at (800) 722-HOPE [4673].

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Individuals With Scleroderma Without Lung Disease Needed to Study a Non-invasive Lung Function Test to Predict Early Airway Injury.

National Jewish Health Rheumatology investigators are conducting a study of individuals with scleroderma without known lung disease to determine if a new lung function test (called Lung Clearance Index) can detect subtle small airway abnormalities that may predict development of lung scarring.
ClinicalTrials.gov NCT 04535245
 

Qualifications include:

-Diagnosis of scleroderma without lung disease by a board-certified rheumatologist.
-Men or women ages 21-75
-Must be able to perform seated breathing tests.

For more information and to enroll in this study, please contact:

Mary Gill RN at Gillm@njhealth.org or Principal investigator Richard Meehan MD at (303) 398-1443.  

Co-investigators: Liudmila Kastsianok MD, Mehrnaz Maleki MD, Lauren Zell-Baan MPH, PhDc, and Kristen Demoruelle MD PhD.

Now Accepting Scleroderma Research Grant Applications

If you hold a faculty-equivalent position and are newly pursuing a career in scleroderma-related research, apply to our New Investigators Grant. Anyone who is an established researcher both inside and outside the field of scleroderma research who wishes to propose pilot studies to obtain preliminary data dealing with a highly innovative and/or highly relevant theme related to scleroderma should apply for our Established Investigator Grants.

To learn more about our research grants or apply, visit our website. We will accept applications until September 15, 2022.

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.

Mogil's Mobcast Talks With Helen Golston

On the recent episode of Mogil's Mobcast, Ann speaks with Helen Golston, who has been living with scleroderma for twenty-six years. During the episode, Helen will share her experience with scleroderma. Listen now and learn more about Helen's positive attitude when dealing with scleroderma.

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