Everything on some level is personal to somebody, somewhere, even when it comes to businesses and corporations. When a group of people gets together to promote a cause, the founders of that cause pour their heart and soul into it to help make it succeed. Whether it’s to help students, diseases with no cure, research foundations, awareness walks, raising money for your local religious organization, or what may be hopeless causes. There are a multitude of these causes everywhere in the world. Corporations act as a whole to donate to various causes, while local communities come together through small donations, volunteer work, and fundraising campaigns to help people and causes they believe in. There’s a belief that we are driven to be more than what we are by improving the human experience with our capacity to give.For every fundraiser, nonprofit, awareness campaign, or charitable effort, there is usually a personal story, a hardship, a loss, a belief, a community problem, or even a success story that inspires others and motivates people to want to do more.
In the case of people with neurodegenerative diseases like Parkinson’s, that personal story is often the disease itself, and the numbers behind it make the cause impossible to ignore. According to the International Parkinson and Movement Disorder Society, a large population-based study found 10-year mortality was 47.9% in Parkinson’s patients compared to 20.3% in matched non-Parkinson’s controls, meaning Parkinson’s patients are more than twice as likely to die within a decade. The leading recorded cause of death for those with Parkinson’s was a nervous system disease (38.7%), followed by circulatory diseases that included heart disease, stroke, cardiovascular disease, and heart attacks. Respiratory diseases as a cause of death include: respiratory failure, chronic lung infections, weakening of respiratory muscles, choking, or asphyxia from a swallowing problem.
So, organizations like the Parkinson’s Foundation, Michael J. Fox Foundation, American Parkinson’s Disease Association, and dozens more take Parkinson’s very personally and have made it their mission to ensure that no patient walks this road alone. One particular organization was started because of the death of a loved one. Dr. George Ackerman created the organization, TogetherForSharon®, named after his mother, Sharon Riff Ackerman, who died from Parkinson’s disease at the age of 69 on January 1st of 2020. In Dr. Ackerman’s book, A Son’s Journey: From Parkinson’s Disease Caregiver to Advocate, he described his relationship with his mother as “best friends.” He says they spoke with each other a hundred times a day. For Sharon, Parkinson’s started to take over her health around 1999, suffering from worsening rigidity in her left arm, to experiencing tremors, and her movement slowing to the point where she was unable to perform everyday tasks. Her symptoms made daily life challenging for her due to the loss of dopamine neurons in the brain, the hallmark of Parkinson’s disease.
Parkinson’s disease takes over people, lives, and sometimes, the lives of those around them. There are several published estimates of what caregivers could make to care for someone with Parkinson’s, Alzheimer’s, dementia, or ALS on a full-time basis. Indeed, currently estimates around $16.84/hour, ZipRecruiter averages the hourly rate between $15.09 to $15.54 an hour, and yearly estimates from Payscale.com around $31,000 – $40,000 per year for many full-time caregivers, depending on where you live and the cost of living.
So, for Dr. Ackerman, learning to be a caregiver came when his mother’s Parkinson’s symptoms changed in 2017 after a failed clinical trial that sent her spiraling downward with hallucinations and delusions. The suspected cause of these reactions was a change in medication during the trials. In an interview with Rachel on the Columbia Southern University website, Dr. Ackerman said, “That was the first time we heard of hallucinations and delusions. From that point on, her health just declined, unlike anything we’ve ever heard of or seen. Even today, I don’t understand what happened, but that’s when I became her caregiver and realized that this is worse than something I’ve ever dreamed of.” Dr. Ackerman describes his experience as: “Caregiving, even as an educator, is something you cannot take a class for or even earn a degree in,” he said. “I felt like I was back in law school, being thrown into court or, as a police officer, being thrown into the street. I just didn’t know what I was doing, so I made lists and tried to accomplish each thing, anything and everything. It’s not an easy thing to go through.”
What Dr. Ackerman went through with his mother is one part of one story that repeats itself in every part of the world where the burden of Parkinson’s disease exists. Thousands of families experience the emotional and financial burdens of caring for a loved one. The emotional and financial toll that Dr. Ackerman and countless other families carry every day, simply by showing up for a loved one with Parkinson’s, is the very reason fundraising matters. The cost of care, in most cases, is borne entirely by the family, out of pocket, without reimbursement, and often without warning. Whether it’s a spouse, a child, or a hired caregiver walking through the door each morning, someone is paying for it, and that someone is almost always the patient’s own family. There is no insurance policy for the day-to-day reality of Parkinson’s caregiving. The website Investopia, lays out how the cost of caregiving and geography drives the differences in prices state by state, with hourly rates from $25 per hour in Mississippi to $44 per hour in South Dakota. Investopia predicts that roughly 70% of Americans over age 65 will eventually need some form of long-term care and that the level of care, especially for patients with neurodegenerative disease complications, could see needs escalate further.
There is limited coverage in the United States for caregiving costs, most of which are not fully covered by standard medical insurance. When it comes to paying for care, most families quickly discover that their insurance doesn’t go nearly as far as they expected. Medicare may cover short-term skilled nursing care, rehabilitation, therapy, and limited home health visits, but it wasn’t built for the long haul. It also won’t pay for someone to come in every day and help the patient get dressed, bathed, or assist in helping someone to eat, as the case may be. Medicaid can fill some of those gaps, but only for families who meet low-income requirements. Private long-term care insurance may help with some caregiving expenses, depending on the policy. For most families, the reality is a patchwork mix of insurance and out-of-pocket coverage, based on whatever the insurance covers and what it doesn’t. Not to mention the amount of personal time someone puts in, having to make choices, and giving up one thing for another. There is no single solution or safety net built for this. Families figure it out as they go, and they absorb the cost in ways that don’t always show up in a dollar amount, but in emotional stress and anguish, lack of sleep, personal sacrifice, and the overall toll caregiving takes on a person.
After losing his mother to Parkinson’s disease, Dr. George Ackerman transformed grief into purpose, creating an organization rooted in the belief that Sharon’s story, and stories like hers, deserve more than an unremarkable passing thanks to a disease that robs people of themselves long before it takes their life. Instead, he created TogetherForSharon®, an organization dedicated to advocacy, education, and Parkinson’s awareness through interviews with Parkinson’s patients and caregivers. Dr. Ackerman hosts several podcasts, including the TogetherForSharon Podcast, discussions on policy, and legislative efforts. He is also the author of A Son’s Journey: From Parkinson’s Disease Caregiver to Advocate, Sports, Exercise, and Slowing the Progression of Parkinson’s Disease and Co-author of I LOVE YOU, GRANDMA SHARON! Brooke and Grandma’s Days with Parkinson’s Disease.
Through his organization’s fundraising efforts, Dr.Ackerman has raised $53,000 in 2025, and his family personally matches up to $1,000 annually in Sharon’s memory to support Parkinson’s awareness and research fundraising. Other fundraising efforts by the TogetherForSharon® organization include: Parkinson’s Foundation “Moving Day” walks, Team Fox fundraising campaigns, charitable races and awareness walks, community partnership events, and Drive Toward a Cure automotive fundraising event.
Fundraising takes effort; giving can take more of an effort when there’s very little to give. For most people in the world, it’s sometimes impossible to give except to yourself to keep the lights on and food on the table. For those with Parkinson’s disease and other neurodegenerative diseases like ALS and Alzheimer’s, much has been taken away. Sometimes, fundraising efforts made on their behalf are all they have to rely on. No one asked to get these diseases, and anyone could be the next patient until solid preventive measures are developed or cures are found. Give however you can, your time, your voice, your dollars, or simply a few of your thoughts about the implications of these diseases and what they do to us, because the next person who needs it could be someone you love, or it could be you.
Turning grief into advocacy, loss into purpose, tragedy into action might be the most remarkable thing about being human.
Image by Chris Denny and ChatGPT
