The conference was held at The Commons in beautiful Irvine, CA. We are so thankful for the financial assistance from the California Institute for Regenerative Medicine (CIRM), for a second year, which allows all attendees to have a no cost conference with travel expenses paid in full.

To provide further assistance to the attendees, they are greeted at the airport and shuttled to the hotel, which allows for introductions and conversation with others attending the 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 stays 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 is that it offers a connection between patients, care partners, clinicians and researchers. This opportunity allows everyone time to mingle and discuss ALSP specific questions or ideas that they would not have the opportunity to discuss otherwise. While also bringing a community together so they no longer feel 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 the most devastating disease that people have never heard of…ALSP.

Thank you for joining me on this journey.

All my love,
Heidi Edwards

• 72 attendees

• 18 presentations

• 7 clinician interviews

• 6 patient/care partner interviews

• A lifetime of memories and a future filled with HOPE.