I am Jacqueline McGuinnes
a family member in a familial ALS family
I lost my mother to ALS in 1997 and my brother to ALS in 2021.
I lost my mother to ALS in 1997 and my brother to ALS in 2021. In that time span, while a lot has been done to keep PALS comfortable and they now have equipment (Tobii, personalized motor chair, etc.) to provide a better standard of care and quality of life, it does not feel like much has been done to find a cure or a drug to slow ALS down. Side note, Team Gleason was an enormous help and support for my brother’s care and guidance.