Winter Happenings at the Foundation: CEO Update December 2024
GivingTuesday is Here!
Amgen Rare Disease is generously offering a $25,000 match for GivingTuesday.
Don’t wait—make your matched gift today at scleroderma.org/givingtuesday and help bring us closer to a future free from scleroderma!
Happy Holidays from the National Scleroderma Foundation !
The holiday season is here and soon a new year will begin. The holidays are a great chance to gather with friends and loved ones, share stories from the year and begin thinking about the possibilities the new year will bring.
Our dedicated team at the Foundation is doing this same kind of reflection as we plan for an exciting 2025. As we reflect, we're constantly reminded about the strength that comes from working with our community. All of us have so much to be proud of this year. Our commitment and efforts to support research are leading to important progress. Our support groups continue to connect and engage—providing a space to share ideas, worries and achievements. The National Scleroderma Conference helped some of the newest members of our community build networks and connections that will serve them throughout their journey with scleroderma.
We are continuing to work hard and innovate for the new year. Below is just some of the work that we have been doing over the last month to make sure that we're making the greatest impact that we can in improving the lives of people affected by scleroderma.
As the year comes to a close, it’s a time for reflection and gratitude—a chance to look back on the progress we’ve made together and the lives we’ve touched through our shared commitment to overcoming scleroderma forever. It’s also a time to look forward, to recommit to the work that still lies ahead, and to seize opportunities to create an even greater impact.
Right now, you have the power to make a meaningful difference before the year ends. Thanks to a remarkable $75,000 matching gift from a generous family in our community, every dollar you give until Dec. 31 will be doubled—multiplying your impact on the lives of those who rely on us for hope, support, and solutions.
Your gift will fuel critical research, expand life-changing resources for patients and families, and propel us closer to a future free from the pain of scleroderma. This matching opportunity won’t last long—join us in closing out the year with greater purpose and resolve!
Give now to double your impact and help change lives today at scleroderma.org/winter
Día de los Muertos, or Day of the Dead, is a treasured tradition in the Latino community that celebrates the lives of loved ones who have passed. This November, at the Las Vegas Springs Preserve’s annual Día de los Muertos event, family, friends, and supporters gathered to honor the memory of Evelyn “Lynn” Orta, a true scleroderma warrior who bravely battled scleroderma for 12 years.
Read more about how these students honored Lynn’s passionate advocacy and commitment to the scleroderma community while bringing awareness to hundreds of people about the disease.
As part of the Foundation’s past two Scleroderma Awareness Month campaigns, we have seen a huge level of interest in participating in #TealTalks. This summer, many members of our community asked for these events to be held throughout the year. In November we launched our year-round #TealTalk series with a gathering to discuss exercise and scleroderma.
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During this discussion, members of the community shared how they stay active, tips and tools that have worked to support their exercise activities and some goals for the upcoming new year. Dr. Janet Poole, OT, and Alexis Harrison, of Yoga for Scleroderma, helped guide the conversation and shared their own expertise.
We look forward to our next #TealTalk in January to discuss advocacy efforts. Stay tuned for more details soon!
Winter Happenings
Don't miss these chapter events coming up soon!
>> To find an event near you this winter, visit scleroderma.org/calendar
Call for Leadership Nominations
Help shape the future of the Foundation by recommending a colleague for service on the Board of Directors! Applications are due February 3. Apply Now
New Newsletter Sign-Up Process
We’re excited to share that signing up for the Connections newsletter is now easier than ever! The process has been streamlined with a cleaner, user-friendly form. Encourage your community to stay connected by signing up at the link below. Subscribe
Application for National Scleroderma Foundation’s Patient Advisory Board (PAB) is Now Open!
The PAB serves several vital functions to advance the work and mission of the Foundation.
The PAB serves as a link between the Foundation and the patient community and takes a leading role in disseminating patient information and education, developing educational programming, and establishing research priorities.
Current PAB members will be hosting an Ask & Answer session on December 12th at 1pm ET via Zoom to allow those interested in applying to learn more about the board. Once you register for the Ask & Answer, you will receive the link to the Zoom meeting. PAB Application
Find Support
Support is a pillar of the Foundation’s mission, and we offer more than 50 scleroderma support groups around the country. Our support group facilitators are trained volunteers who are committed to creating safe, welcoming and inclusive environments where all can share about their journey with scleroderma.
You can access our digital directory to search for a group near you. You may also contact us to locate a group or see the full list of groups here.
“The joy of brightening other lives, bearing each others' burdens, easing others' loads and supplanting empty hearts and lives with generous gifts becomes for us the magic of the holidays.” - W.C. Jones