Scleroderma Patients 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 scleroderma patients 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. 

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@njkhealth.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.

Thank You for Attending the 2022 National Scleroderma Conference! 

If you registered for the conference, you will have access to the content until September 17.

Thank you for attending the 2022 virtual National Scleroderma Conference, the National Scleroderma Foundation’s signature educational event. The conference's strength lies in the world-class expertise of our presenters and in the engagement of everyone affected by scleroderma, including you.

If you registered for the conference and are interested in accessing the conference content, visit the Connecting Our Journey's Airmeet platform. Use the login information from conference and you will be able to see all available recordings and slides.

If you have trouble logging into the virtual platform, please email sclerodermaconference@dynamicevents.com.

Thank you to our Patron Sponsors!

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

SPIN Newly Diagnosed and Caregivers Virtual Support Groups

Are you living with scleroderma and identify as transgender, non-binary, Two-Spirit, or another non-cisgender identity? SPIN is looking for individuals to join an advisory team to provide input on projects related to the impact of sex/gender on scleroderma. If you are interested or would like more information, please contact spingeneral@gmail.com. 

Teens & Parents Support Group

ZOOM: July 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.

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

VIRTUAL: July 27, 2022; 7- 8 p.m. 

Scleroderma diagnoses are less common amongst men. 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.

 REGISTER

Ohio Sunday Sitdown

FACEBOOK: Sunday, July 24, 2022; 1 p.m. Eastern

Join the Ohio Chapter for Sunday Sitdowns on the last Sunday of every month at 1 p.m. Eastern via Facebook Live. This is a time to connect with others who live with the challenges caused by scleroderma. Please note, given the open, unsecure nature of Facebook, do not share private, personal information during this conversation. 

WATCH

Mogil's Mobcast 

On Episode 26 of Mogil's Mobcast, Ann talks with Physical Therapist Sandy Vojik. The episode will provide breathing techniques, fascia work, and posture exercises. If you are interested in learning more, listen to Mogil's Mobcast on Apple Podcasts.

LISTEN

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.

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