National Scleroderma Foundation

Offices closed for Martin Luther King Jr. Day

On Monday, Jan. 16, the National Scleroderma Foundation joins the rest of nation in honoring the life of Dr. Martin Luther King Jr. Offices will be closed that day in observance of the holiday.

CEO Update

I hope you had a wonderful holiday season and are having a good start to 2023. We have lots of exciting things happening at the National Scleroderma Foundation this month.

• 25th Anniversary kickoff
• New membership program
• In-person meetings and events
• Mission Pillar highlights
• Amazon Smile

Read the full CEO Update!

REMINDER: 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!

New membership model underway!

Our new membership program, which started Jan. 1, has two levels you can join at and brings many more exciting benefits to members. A membership includes a digital subscription to our signature publication, Scleroderma Voice magazine.

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.

Just a few more days to give through CFC

You have until Jan. 15 to make your gift through the Combined Federal Campaign!

The CFC is for federal employees and military personnel (retirees included).

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

Thank you for supporting our mission.

Looking for a support group?

Did you know that support is one of the National Scleroderma Foundation’s three pillars? Find a support group near you or connect virtually. You can find information about our support groups on our website.

Find a support group

Journey through Pulmonary Fibrosis

Being diagnosed with a rare disease can often leave people with more questions than answers. This is especially true for those living with pulmonary fibrosis. In an effort to build and give a voice to this courageous community, the ‘Journeys Through Pulmonary Fibrosis’ podcast series brings together the inspirational people living with this condition, their caregivers and the researchers and healthcare providers working tirelessly to support them.

Listen to the episode

ImmunoCARE Study

Scripps Research, in partnership with Cue Health, is launching ImmunoCARE, a study focused on reducing severe COVID-19 outcomes within the immunocompromised population. Their hypothesis is that access to sensitive, at-home nucleic acid amplification tests, telemedicine and rapid delivery of antiviral treatments will reduce transmission and improve outcomes for immunocompromised individuals.

By engaging individuals who face higher COVID-19 risks due to their immunocompromised status, they hope to learn how to minimize unwanted outcomes of potential exposures and focus on opportunities that empower patients.

Learn more about the study.

BIPOC (Black, Indigenous People of Color)

ZOOM: 4 p.m., Eastern Time, Sunday, Jan. 15

The BIPOC support group's next virtual meeting will be at 4 p.m. Eastern, Sunday. This week's topic will focus on keeping your teeth 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.