The Scleroderma Research Foundation Monthly eNewsletter

eNews: May Edition

Join us at this year’s SRF Patient Forum, happening in just a week! We can’t wait to share the latest research updates, information on symptom management, how you can participate in research, and more during this half-day forum. Register today for this Scleroderma Awareness Month event.

Here’s what you need to know:

• When: Tuesday, June 6th, starting at 9:00 am PDT, 12:00 pm EDT and lasting 1/2 day
• NO COST to participate

P.S. There’s already great resources available on our forum site, including information from our sponsors and our community partners—take a look!

What You Can Do for Scleroderma Awareness Month

In addition to joining us for the Patient Forum, we also invite you to #SayScleroderma for Scleroderma Awareness Month. Not enough people know what scleroderma is or does. Lack of awareness causes delays in treatments and diagnosis. But together we can change this. 

Here's a few ways you can start spreading the word now:

1. Download the social media toolkit on our website. This has instructions and examples for spreading awareness on social media.

2. Share your story. Use photos, videos, and words to tell people why you care about saying scleroderma.

3. Keep the conversation going. Throughout the month—whether online or in person—ask your friends, families, and neighbors to join you and #SayScleroderma.

Visit our website to download the toolkit & learn more.

Invitation for People Living with Scleroderma to Participate in a Virtual Public Meeting

People who are living with scleroderma are invited to participate in a virtual public meeting on June 8, 2023 from 9 am-1 pm Eastern US Time as part of an important ongoing project to formally review current methods of studying different aspects of scleroderma. Patients will have the opportunity to ask questions and leave comments.

This public meeting is being held to elicit input from the multiple stakeholders including patients, clinicians, investigators, non-profit Foundations, industry partners, the US Food and Drug Administration (FDA), and the US National Institutes of Health (NIH) on the current status of outcome measures for clinical trials that would lead to approval of drugs for use by patients with scleroderma. 

The meeting will include a presentation by SRF Board Chair, Luke Evnin, PhD (dx 1998) about the importance of developing validated outcomes for use in scleroderma clinical trials in order to achieve FDA approval for new treatments. 

This project is sponsored by the US National Institutes of Health and the Scleroderma Clinical Trials Consortium and has directly involved patients as research partners who have served on Task Forces alongside physician-investigators and members of the biopharmaceutical industry.  

Funding Research to Understand Scleroderma-Associated Interstitial Lung Disease (ILD)

To better understand scleroderma-associated ILD, the SRF funds the work of Paul Wolters, MD Professor of Medicine at the University of California, San Francisco. There is growing interest in understanding the shared mechanisms of differing ILD subtypes and whether this may provide insights into prognosis and effective treatment.

Dr. Wolters’ lab has demonstrated many similarities between idiopathic pulmonary fibrosis (IPF) and a subset of non-IPF ILD that has a disease pattern called usual interstitial pneumonia (UIP), which includes 25-30% of scleroderma ILD patients (SSc-UIP).

Currently. Dr. Wolters’ group is using single-nuclei-RNA-seq to identify additional shared pathways and cell types between SSc-ILD and IPF. We look forward to how Dr. Wolters' group's learnings can help those with scleroderma.

Playing Pickleball for a Cure

Join us in giving a big hand to SRF Cure Crew members Beth and Lisa for hosting a pickleball tournament fundraiser—raising over $37,000 for scleroderma research!

Read more about how they tapped into the Pickleball craze to raise funds and awareness for scleroderma research.

Research is at the center of all we do to find a cure.

Ways to Support Research

Employer Matching / Planned Giving