In addition to funding programs that advance stem cell and gene therapy development, CIRM supports mission‑focused scientific conferences that foster information exchange aligned with its goals.
Second annual ALSP Conference
Recently, CIRM supported the 2nd Annual ALSP Community Conference: Insights and Potential of Cell‑Based Therapies for Leukodystrophies.
The conference brought together patients, advocates, care partners, clinicians, and researchers to discuss ALSP, or adult‑onset leukoencephalopathy with axonal spheroids and pigmented glia.
ALSP is a rare neurological disease marked by changes in specific brain regions. Symptoms vary but often include impaired judgment, personality and psychological changes, and movement problems.
Heidi Edwards, President and Founder of Sisters’ Hope Foundation, supports and empowers families affected by HDLS/ALSP. She shared why conferences like the ALSP Community Conference are vital for helping patients and families navigate these conditions.
Sisters’ Hope’s Heidi Edwards recaps conference
The 2nd Annual ALSP Community Conference took place at The Commons in Irvine, CA. Sisters’ Hope Foundation is grateful for CIRM’s financial support, which once again made the event free for all attendees.
The evening before the conference, SHF hosted a meet‑and‑greet at the hotel. This gathering helped attendees connect early and made the first conference day more welcoming. Because everyone stayed at the same hotel, we enjoyed a relaxed evening of food, conversation, and laughter.
Day 1 featured presentations from SHF, patients, care partners, and clinicians. Day 2 included more talks, roundtable discussions, and a lab tour at the SOKA University campus. We laughed, cried, and bonded as a community.
The most meaningful part of the conference was the connection it created among patients, care partners, clinicians, and researchers. It gave everyone time to discuss ALSP‑specific questions and ideas they otherwise wouldn’t share. It also united the community, helping attendees feel less isolated and alone.
The conference centered on patients and care partners, who remain our top priority. This year, we added their voices to complement the scientific presentations with lived experience. The approach was well received.
SHF entered 2024 with renewed optimism and hope for a future without ALSP, carrying that spirit 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.