The National Scleroderma Foundation's Advocacy Team Scores Big for Scleroderma Research

If you wrote to your Senators urging them to include scleroderma on the PRMRP, we are pleased to say our efforts paid off! The Senate Appropriation Committee released their draft bill for the Peer-Reviewed Medical Research Program, and scleroderma was included as a condition eligible for the study. Thank you to everyone who advocated for scleroderma. This is a big win for the community, and each step brings us closer to finding a cure.

Scleroderma Young Adults Needing Connection (SYNC) Group

ZOOM: August 12, 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 by emailing agietzen@scleroderma.org.

El Grupo Bilingüe de Apoyo

El Grupo Bilingüe de Apoyo de la Fundación Nacional de Esclerodermia le invita a su evento educativo vía zoom “Hipertensión Pulmonar,” el próximo 13 de agosto del 2022.

10:00 am (Costa Rica)
11:00 am (Colombia) (Ecuador) (Mexico) (Panama) (Peru) 12:00 pm (Bolivia) (Chile) (USA)
1:00 pm (Argentina)
6:00 pm (España) 

Por favor envíe sus preguntas al correo electrónico miamiradgroup@gmail.com antes de la reunión. A continuación, vínculo para registrarse al evento. 

REGISTRO

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.

LGBTQ+ Virtual Support Group

The National Scleroderma Foundation stands with LGBTQ+ members of our community across the country. If you are interested in starting/joining an LGBTQ+ scleroderma support group, please let us know!

Newly Diagnosed and Caregivers Virtual Support Groups

The National Scleroderma Foundation would like to invite members of our community who are interested in starting/joining a Newly Diagnosed or Caregivers virtual support group to please let us know! We will be creating a focus group for each support group to help determine best dates and times to meet, gauge participation, and find leaders and co-leaders for the support groups.

Mogil's Mobcast with Amy DeMaria

In Episode 27 of Mogil's Mobcast, Ann talks with Amy DeMaria, who is Inspire's Senior Vice President of Marketing. Inspire is the world’s largest social network for health. The platform brings together hundreds of disease communities to connect, share information, and provide support. It is an online community for individuals struggling with their disease. Inspire is a safe, secure, and anonymous website for people to connect to one another. There are over 2 1/2 million members on the platform, and the scleroderma community has over 77,000 members. 

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