Alzheimer’s has taken so much from my family. It’s completely changed my world this past year and a half in a way I could never have imagined and was not prepared for. We lost my grandfather to it in his 60’s when I was just a kid and as many close to me know, my mom has been fighting this horrible disease since her diagnosis in March of 2022, but realistically a few years before that when symptoms started showing up.
My mom’s diagnosis is considered rare, early onset Frontal Variant Alzheimer’s disease (FVad.) I remember the day her Neuro shared the results and said this was “Atypical” but I had no idea what that would really mean for our family at the time. Because this diagnosis is rare there is far less research on it then typical dementia or Alzheimer’s, less experience treating it, and less focus on prevention vs other types. This has made it hard to find the right resources and support we desperately needed the past year. Before my mom got sick, I thought I knew so much about this disease but now in the trenches living it and hitting walls even with trained health care workers telling me they don’t have any experience with it or struggling with how to help my mom, I’ve been humbled. There is SO much work left to do to truly understand this devastating disease and all of it’s variants and more support needed for the families who are living with it right now.
We have to start somewhere, so I’ve started a team and will be walking in the Alzheimer’s Association walk Sunday Oct 15th in Foxboro. By participating in the Alzheimer’s Association Walk to End Alzheimer’s, I’m raising funds and awareness to advance the fight against this disease — funds that allow the Alzheimer’s Association to provide 24/7 care and support while accelerating critical research. When I was in need of support, the Alzheimer’s Association was and continues to be a good resource for me. This is my chance to give back.
Families facing Alzheimer’s need us now more than ever — and with your help, we can be there for them. Please consider making a donation or if you are up for walking register as a participant and join my team, The Red Hot Chili Steppers! Together, we can raise money and eventually put an end to Alzheimer’s disease.
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