Listen to my voiceover of the letter to Congress:
Thank you to the Michael J Fox Foundation, Congresswoman, and the entire staff for sharing my mother’s fight with this terrible disease known as Parkinson’s. I have advocated for awareness and hope for a cure as my whole family was thrown into this battle we lost when my mother passed on 1/1/2020.
My mother, Sharon was my best friend and lived a very independent and healthy life. She had no major medical issues until around 15 years ago. She started seeing symptoms that were difficult to handle such as stiffness in her arm and hand that made it tough to function, but she was able to continue to be independent. In the final year of her life the disease accelerated, and no one could determine why.
My mother’s dream and hope were to just watch her 3 grandchildren: Brooke, Joshua, and Eli grow up) which she will never have the opportunity to accomplish due to Parkinson’s disease. In fact, our youngest Eli likely will never remember her because he was only 2 years old when she passed which breaks my heart every day.
I became her primary caretaker, sacrificing my life to search, weave, and find any and everyday methods we could take to help her. We tried numerous doctors, venues, places, and people but nothing seemed to improve. The final year of her life was torture for us all just seeing her get worse and worse until the final seven days of her life when she just breathed and could not speak, move, or truly live life anymore. There is no cure as of today but if we all come together through more resources and national attention this could gain the funding necessary to end Parkinson’s disease once and for all.
I am only one person, and my family is one family, but this disease affects many unheard and unsee families that need assistance. As a caregiver, I felt alone, and we went through numerous nursing aids that were unequipped, and unable to even understand the disease or aid an individual with Parkinson’s disease. There are great organizations like the Michael J Fox Foundation that offer programs and are working to research a cure but need more support and federal assistance that should be a priority in 2023.
We created a webpage togetherforsharon.com to ensure she is never forgotten and we pass our memory band across the country for free as well as volunteer at walks in any way we can to ensure she is never forgotten.
Our hope is that others never have to go through what we have, and I am grateful again for the opportunity today to share my mother and our story. Let’s end Parkinson’s and find a cure and I will never stop advocating in memory of my mother, Sharon. Thank you. Dr. George Ackerman
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Letter to Congress TO END PARKINSONS
https://www.congress.gov/bill/117th-congress/senate-bill/4851