Care for the Genetic ALS & FTD Community
For our loved ones who have manifested full ALS and FTD and received a symptomatic diagnosis we appreciate the wonderful care on offer to them at many dedicated ALS and FTD clinical centers around the world and across the United States. At End the Legacy we have taken it as a mission to ensure the risk to our health from being in families with inherited ALS and FTD is acknowledged and addressed as part of our personal health profile even when asymptomatic as we desire it.
Guidance for clinical management of pathogenic variant carriers at elevated genetic risk for ALS/FTD
A signature achievement since our founding was helping to inspire, sponsor, participate, and assist in the drafting of the 2024 Review article published in the Journal of Neurology, Neurosurgery and Psychiatry. The project, led by Drs Michael Benatar and Terry Heiman-Patterson, established for the first time that being monitored while at risk for genetic ALS and FTD is sound and recommended if desired. Other recommendations related to exercise, diet, and more are contained in the report. ETL paid for the open access fee, so all can read this groundbreaking development: https://doi.org/10.1136/jnnp-2024-334339 .
End the Legacy At Risk Care Centers of Compassion
In this new paradigm of our health in relation to this risk being recognized as of importance, we have established an initiative to encourage and support the establishment of clinical centers where our community members can be competently seen for this need. You can read our announement of the program here.
First Center of Compassion Open!
We cheer our partners at the ALS Hope Foundation and Temple Neurology in Philadelphia, PA, who have established the first End the Legacy recognized Center of Compassion. Led by Dr. Terry Heiman-Patterson and SOD1 Carrier Nurse Practitioner Cassandra Haddad, the team provides specialized care for those in need. If you or a loved one are at risk, we encourage you to consider joining their program for comprehensive medical support and compassionate care.
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To learn more email cassandra.haddad@temple.edu .
