Scleroderma Young Adults Needing Connection Group Meeting

ZOOM: September 9, 2022; 7 p.m. Eastern

If you are between the ages of 18 and 40 with scleroderma, join the Scleroderma Young Adults Needing Connection (SYNC) group. You can learn more and sign up at the link below.

SIGN UP

National Scleroderma Conference Fleece

Did you attend the 2022 Connecting Our Journeys National Scleroderma Conference? Don’t forget to order your complimentary fleece (one per registration)! To redeem your fleece, visit the link from our post-conference email. The webstore will be closing Friday, September 2. If you have any questions, please contact Caryn Anatriello at canatriello@scleroderma.org.

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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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!

NIAMS Funding Webinar

Date: Wednesday, September 14, 2022
Time: 1 to 3 p.m. Eastern

Attend an informational webinar on the NIH maximizing opportunities for Scientific and Academic Independent Careers Program FOA.

Potential applicants to the NIH MOSAIC Program to Enhance Diversity K99/R00 (PAR-21-271, PAR-21-272, and PAR-21-273) and UE5 (PAR-21-277) Funding Opportunity Announcements are invited to attend an upcoming webinar on planning submissions to this program. Participation in the webinar is encouraged and optional, but it is not required for application submission.

During this webinar, you will learn about the MOSAIC program and the process for writing a K99/R00 or UE5 application.

JOIN

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.

NOTE: Requires a one-time study visit at National Jewish Health in Denver, Colorado.

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.

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