Representing Lafora community at AES Meeting

Jenifer smiling behind an AES sign Vice President Jenifer Merriam represented Chelsea’s Hope at two back-to-back conferences. From conversations with other leaders about improving organizational structure, to learning about the resources and knowledge available for the rare epilepsy community, it was a powerful event.

2024 Partners Against Mortality in Epilepsy (PAME) Conference

The first day of the PAME conference, Jenifer joined other families affected by epilepsy and advocates in programming focused on navigating grief. While it was heavy, Jenifer came away with new connections and ideas about how Chelsea’s Hope can better support bereaved Lafora families.

The second day of PAME was scientific conference sessions.

We extend our heartfelt thanks to the Danny Did Foundation, who supported Jenifer’s travel to the PAME conference. Danny Did works to raise awareness and support families affected by Sudden Unexpected Death in Epilepsy (SUDEP), in honor of Danny Stanton They also provide grants for seizure devices.

“The most impactful part of attending was connecting with other rare epilepsy advocates and stakeholders to advance Chelsea’s Hope’s goals.”

Michaelle Jinnettee and Jenifer Merriam smiling in front of Rare Epilepsies Network banners

Michaelle Jinnettee with Cure KCNH1 Foundation and Jenifer Merriam at the Rare Epilepsy Network booth at the 2024 AES Annual Meeting.

2024 Annual Meeting of the American Epilepsy Society (AES)

Jenifer was a voice for the Lafora disease community at AES while engaging with pharmaceutical representatives, clinicians, and umbrella epilepsy advocacy organizations. She also attended the Rare Epilepsy Network luncheon which provided opportunities to network with other leaders in the rare epilepsy space.

“I saw a video of a patient who went from using a wheelchair to walking independently after receiving ASO treatments in an n-of-1 trial. It made me feel hopeful that we are now treating Lafora patients with our own ASO therapy.

AES provided an opportunity to network with others in the epilepsy space and gather cutting-edge information about treatments, research, and best practices in the epilepsy community. I am so grateful that I attended.”

Dr. Antonio Delgado-Escueta Won the AES’s 2024 Founders Award

We want to celebrate Dr. Delgado-Escueta for this prestigious award! We are very thankful he is a member of the Chelsea’s Hope Advisory Board and for all his important collaborative work to find a cure for Lafora disease.