National Scleroderma Foundation

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eLetter #985 | August 2, 2022

	We're Back in the CFC! The Combined Federal Campaign (CFC) offers federal employees and military personnel (including retirees) the opportunity to donate to the Foundation through payroll deductions, credit/debit card payments, or e-check/bank transfers. Giving to the Foundation through the CFC is easy! Simply visit the CFC’s online pledge portal and choose #10089. The CFC runs annually and officially opened on September 1.
	BIPOC Support Group Meeting VIRTUAL: September 11, 2022; 4 p.m. Eastern Learn important information about traveling with a disability during the BIPOC support group's September 11 virtual meeting. SIGN UP
	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
	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. READ
	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 Applications will be accepted until September 15, 2022. 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.
	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 with Dr. Antonia Valenzuela On the latest episode of Mogil's Mobcast, Ann talks about calcinosis with Dr. Antonia Valenzuela. For those scleroderma warriors with limited cutaneous form of systemic sclerosis, or CREST, calcinosis can be a huge frustration. Dr. Valenzuela is actively working on the development and validation of the Mawdsley Questionnaire, a patient-reported outcome for calcinosis. If you are interested in taking the questionnaire to help find answers about calcinosis, please email Dr. Valenzuela at antonia.valenzuela@uc.cl.You can listen to all episodes of Mogil's Mobcast on Apple Podcasts. LISTEN