National Scleroderma Foundation

Celebrate with us!

The new year marks the start of our 25th anniversary! To kick off our anniversary in style, a few of our members and staff have a message to share. Stay tuned for more to come!

Quarterly stakeholder updates

Many of you have attended our quarterly stakeholder updates to hear about progress in our exciting work to strengthen our organization, to build capacity for growth in support of individuals affected by scleroderma, to expand our education programs and to build greater resources for research funding.

You can sign up now for our 2023 sessions!

Announcing our new membership model!

We are excited to announce that as of Jan. 1, the National Scleroderma Foundation has a new membership program!

Our new membership program has two levels you can join at, brings many more exciting benefits to members and offers a digital subscription to our signature publication, Scleroderma Voice magazine, to everyone who becomes a member.

Champion Members ($35 domestic, $45 international per year) receive 10 member benefits, while Friend Members (free of charge) receive five. To learn more about the benefits you’ll receive as a member, please visit scleroderma.org/benefits.

To sign up as a Champion Member today, visit scleroderma.org/membership.

To sign up as a friend, visit scleroderma.org/friend.

Our membership drive will occur annually in January, February and March of each year, so be sure to sign up now! Becoming a Member of the Foundation is a way for our community to engage with the organization and with their local chapter.

Pre-existing members received important communications regarding how these changes will affect their membership in December. If you have any questions about how our new membership model or how it will affect you, please email us at development@scleroderma.org or give us a call us at (800) 722-HOPE.

Last chance to give through CFC

Forgot to make your year-end gift? Don’t worry. You still have one week to make your gift through the Combined Federal Campaign (CFC)!

The CFC for federal employees and military personnel (retirees included), is open until Jan. 15.

Simply visit the CFC’s online pledge portal and choose #10089 to support the Foundation.

Thank you for supporting our mission.

Become a support group leader

Curious about becoming a Support Group Leader? One Scleroderma Support Group Leader Education (SPIN-SSLED) program graduates shared, "I recommend this training to help build your confidence, to gain understanding on the purpose of support groups, and to get different perspectives from other support group leaders. After the training and through our regular meetings, I feel more confident and although there is always room for improvement, I know that I have the right team to help guide me there."

Learn about SPIN-SSLED

Mogil's Mobcast with Dr. Lesley Ann Saketkoo

On the recent episode of Mogil's Mobcast, Ann talks with Lesley Ann Saketkoo, MD, MPH, who is the director and founder of New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center. They will discuss the importance of exercise and explore the scientific explanation for its benefits to the body.

Listen to the episode

Did you know?

The National Scleroderma Foundation is the leading nonprofit supporter of peer-reviewed research to discover the cause, understand the mechanism and overcome scleroderma forever.

Promising proposals are reviewed for:

Significance: Does this study address an important issue related to scleroderma?
Approach: Are the design, methods, and analyses appropriate and adequate?
Innovation: Does the research represent new ideas and technologies?
Investigator: Are reviewers properly trained and sufficiently experienced?
Environment: Does the scientific environment contribute to its success?

Learn more about how the Foundation is advancing research and treatment.

BIPOC (Black, Indigenous People of Color)

ZOOM: 4 p.m., Eastern Time, Friday, Jan. 13

Learn important information and connect with others during the BIPOC support group's next virtual meeting. This week's topic will focus on keeping your health healthy and will feature guest speakers Mary Miller, DDS Cheif Dental Officer, and Latoya Scott, DDS, MPH.

Caregiver Support

ZOOM: 7 p.m., Eastern, monthly on the fourth Thursday

Q1 2023 dates: Jan. 25, Feb. 23, March 23

This group provides a source of emotional and social support and resources for those caring for a loved one with scleroderma. We will share self-care strategies and tools to reduce stress and enhance coping. We welcome adults, spouses, family members or friends in the caregiver role to attend.

In case you missed it, read “Creating Spaces for Our Caregivers” featuring Rachel Meyn Ugarte and her mother, Elizabeth and learn how this virtual group came to be.

Email support group leader Debbie Haussler at caregivers@scleroderma.org to be added to the calendar invite with the Zoom link.