In addition to funding innovative programs and research that accelerate the development of stem cell and gene therapy treatments, the California Institute for Regenerative Medicine (CIRM) provides funding to support valuable mission-specific scientific conferences where people can meet to exchange scientific information to meet goals relevant to CIRM’s mission.
Recently, CIRM supported the 2nd Annual ALSP Community Conference: Insights and Potential of Cell-Based Therapies for the Treatment of Leukodystrophies.
The conference brought together patients, patient advocates, care partners, clinicians, and researchers to discuss ALSP, also known as adult-onset leukoencephalopathy with axonal spheroids and pigmented glia.
ALSP is a rare neurological disease characterized by changes to certain areas of the brain. Though symptoms of ALSP vary, common symptoms may include issues with judgment, personality and psychological changes, and problems with movement.
Heidi Edwards is the President and Founder of Sisters’ Hope Foundation, an organization that supports and empowers families impacted by HDLS/ALSP. She shared why conferences like the ALSP Community Conference are important in helping support patients and families affected by diseases and conditions.
The following conference recap was written by Heidi Edwards, President and Founder of Sisters’ Hope Foundation. Content has been edited for clarity and brevity.
The 2nd Annual ALSP Community Conference was held at The Commons in beautiful Irvine, CA. Sisters’ Hope Foundation (SHF) is so thankful for the financial assistance from the California Institute for Regenerative Medicine (CIRM), for a second year, which allowed all attendees to participate in a no-cost conference.
The evening before the conference, SHF offered a meet and greet at the hotel for all attendees. This set the stage for the opening of Day 1 of the conference by allowing everyone to have already introduced themselves and easily find those they connected with. Since everyone stayed at the same hotel, we had a relaxing time eating, enjoying conversations, beverages, and laughter.
Day 1 was filled with presentations from SHF, patients, care partners, and clinicians. Day 2 provided more presentations, roundtable discussions, and a lab tour at the picturesque SOKA University campus. We laughed, we cried, and we bonded as a community.
The most amazing part of the conference was that it offered a connection between patients, care partners, clinicians, and researchers. This opportunity allowed everyone time to mingle and discuss ALSP-specific questions or ideas that they would not have had the opportunity to discuss otherwise. It also brought a community together, so they no longer felt isolated and alone.
The conference centered around patients and care partners because they are and will continue to be our #1 priority. This year we incorporated the patient and care partner voice into the conference to round out the scientific talks with lived experiences. This approach was well received by all.
SHF began 2024 with a fresh outlook and a year filled with HOPE for a future without ALSP and carried that feeling right into this year’s ALSP Community Conference.
We have created an ALSP family who we laugh and cry with, share our stories of HOPE and heartache and one that we all can truly understand because we have walked this journey together.
SHF asks that you continue to trust in our work and know that we will never lose focus of the most important goal…to save our families from a devastating disease that people have never heard of: ALSP.
Thank you for joining me on this journey.
Learn more about ALSP at the Sisters’ Hope Foundation website. Photos courtesy of Alvis Pham Photography.
The Stem Cellar 