One of our primary objectives this year has been to ensure access to programs and services for everyone in their scleroderma community, regardless of where they are geographically, or in their diagnostic journey. To that end, the Foundation has committed to having a presence in every state, and we are actively expanding our chapter network to support this goal.
My colleague, Jess Haas Gréus and I had the opportunity to visit constituents on the west coast last week, and I’m happy to share some of the highlights from my time.
While in San Diego, I had the opportunity to meet with a long-time donor who gives in memory of a much-beloved family member. I was so inspired by this new connection, and hearing this family’s story and connection to scleroderma, but also making a new friend who welcomed me with open arms.
I also got to catch up with a long-time friend and colleague at UCSD to learn about their clinical trial capabilities and work.
I also got to catch up with a long-time friend and colleague at UCSD to learn about their clinical trial capabilities and work. You can learn more at https://health.ucsd.edu/care/clinical-trials/
I travelled out to Redlands, California to meet with another colleague in rheumatology at Loma Linda, one of our research and treatment centers, to gain a better understanding of how people affected by scleroderma in the inland empire can access care.
>> Did you know we have FIVE National Scleroderma Foundation Research and Treatment Centers in California? You can learn more at https://scleroderma.org/find-a-treatment-center/ .
In Los Angeles, I met with one of our long-term research volunteers who is a leader in the field to learn how we can better support the research community and foster more collaboration among scleroderma research and treatment centers.
One of my favorite things to do while visiting LA is to walk along the oceanfront walkway in Santa Monica. The weather was perfect, and I had blue skies and plenty of squirrel sightings along the way! I may or may not have swung by the Third Street Promenade on my way back…
I also had the opportunity to meet with a fellow @CHIEF member, and hear about all the wonderful things she is up to!
One of our Patient Advisory Board Co-Chairs lives out west as well, and hosted me for a fabulous dinner under the balmy, starry skies of Los Angeles. What a treat!
While I was down south, Jess was visiting members in Northern California. While there she met with a family whose daughter (age 12) is living with scleroderma – they laughed, planned, and enjoyed each other’s company in the beautiful weather. Jess also met with a gentleman who lost his mother to scleroderma – to hear what the journey/treatment plan for someone with this disease over 20+ years ago was humbling for her. Lastly, she had the opportunity to learn more about the journey of a patient who successfully went through a stem cell transplant.
Jess and I then drove out to Visalia, California to join the sisters of Beta Sigma Phi for their annual meeting. This year, the National Scleroderma Foundation celebrates its 25th anniversary. And the sisters of Beta Sigma Phi have been our philanthropic partners since the very beginning, donating more than $700,000 in the last 25 years to support our mission to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families, and support networks.
We donned our fancy hats, and enjoyed a wonderful time of fellowship and community with these wonderful women who continue to support the important work we do.
On Sunday, I had an opportunity after the conference to drive out to Sequoia National Park, which was breathtaking. Jess and I got some time to reflect on our visits while in the great state of California, and we were both energized by the community and the warm welcome, and look forward to being back again soon, and providing more programs and services for our local chapter there.
If you have thoughts or ideas about how we can best serve you, please don’t hesitate to share. You can email at CEO@scleroderma.org.