Robyn's Legacy: an ALS Caregiver Training Program

From the day she was diagnosed with ALS in 2017, my mom, Robyn's mantra was "I am stronger than you think." She truly embodied strength in every sense of the word and faced every challenge this disease brought her with profound courage until the end. My mom sadly passed away on February 12, 2021, at home surrounded by love. 

I was fortunate enough to have spent the last 8 months of my mom’s life by her side in Boynton Beach, FL. Sharing this time together will always be the greatest blessing of my life.

I will also always be thankful for my mom's aides who became family while caring for her and preserving her dignity and wellbeing. I witnessed firsthand the amount of work, specialized skills, and dedication it takes to care for patients with ALS, especially as the disease progresses.  

In our own caregiver search and through community outreach, I found that there is currently no standardized training for home health aides to learn how to care for patients with ALS—a complex condition that requires unique care. This has contributed to a shortage of competent caregivers for ALS patients and their families, not only in my mom's community but around the country.  Additionally, family caregivers are often left to rely on google searches and message boards in order to navigate their loved one’s evolving needs—from feeding tubes, to respiratory equipment, to end of life care, we figured it out as we went. 

My mom's caregivers truly meant the world to her, and I know that she would want other patients with ALS to receive the same level of care that she had.

As part of her legacy, I decided to raise money for the ALS Association to develop and implement a caregiver training course.

I am pleased to share that thanks to your generous donations last year, the ALS Association has confirmed this initiative and are actively in the development process

 
In honor of one year since my mom’s passing, I hope to raise additional funds for the ALS Association to continue supporting this initiative.

Thank you so much for your generous support in memory of my mom, Robyn.