Sharon’s son, George & Matt’s wife, Betsy
1/1/2020……. Betsy lost her husband, Matt, due to Alzheimer’s disease on the same day I lost my mother, Sharon, due to Parkinson’s disease. It has bonded us together for life. We wanted to share our thoughts and ideas on tough topics in caregiving and send thoughts and prayers for others diagnosed and caregivers, so this BLOG was created in their memories.
The Tackling Tough Topics BLOG 9: The Dark Side of Social Media & Advocacy
10/1/2024
This blog is dedicated to all those caretakers who care for a loved one with any disease and to those who have been diagnosed. We hear you; we see you, and we will never stop fighting until there is a cure!
Sharon’s son, George:
I had an idea one late night… to try to find a way where People with Parkinsons (PwP) could advertise their inspiring work through art, sports, music, entertainment, or any way possible and gain donations directly since many larger scale Foundations likely cannot help each person one on one although they try their best.
I tried to be a conduit or path for awareness. I do not accept money, and do not accept anytime but pour countless days and nights into awareness to help share and voice the message of PD Awareness and hope for a cure.
My message has always been, and I live by these words:
“We love you, we support you, we care about you, and you are never alone!
I will advocate for you; together, our voices are STRONGER!
And I am just getting started!”
So, my idea was simple, add a section at togetherforsharon.com and help those PwP who couldn’t fulfill their lifelong career anymore due to PD but share their inspiring work throughout the world for free, voluntarily and my goal is to have nothing in return but shed a little light on their accomplishments. It couldn’t hurt and doing things for others is what my mother raised me to do. I poured over 50,000$ in many hours in my mother’s memory but in hope to share others journeys for inspiration, awareness, and hope for a cure. Here is how amazing it turned out:
PwP Around the World. Retrieved from https://www.togetherforsharon.com/pwp-throughout-the-world/
Little did I know there is always 1% negative even in the world of Parkinson’s awareness which is quite sad.
I am reiterating the mission, goals, and purpose of togetherforsharon.com to clear up a few areas. Even in 2024, I sadly get questioned as to why you put so much time into helping others free and want nothing in return. Well, I am surprised I still get this question. People even question how there are individuals in the world who do want to help others and want absolutely nothing in return except a cure for PD and to ensure PwP and their families know they are never alone in this fight for a cure. That is all.
Mission: TogetherForSharon® It’s a Movement…no one is alone in this fight! In memory of my mother, Sharon created to raise awareness and hope for a cure for Parkinson’s Disease.
Purpose: TogetherForSharon® is not an organization or foundation on purpose. I am just one son, one voice who lost his best friend and mother due to PD, and I never want anyone to feel as alone as we felt throughout Mom’s battle. I created this website in memory of my mother for Parkinson’s Disease awareness & hope for a cure. We do not accept money or anything for our voluntary work. We do accept that no one is alone in this fight for a cure. We are a family in this cause, and until there is a cure, we still have work to do for advocacy! Some people in the world sacrifice for others and want nothing in return. Sending love and support always, Sharon’s son, George
Facebook Groups are not always a safe place for Advocacy or Awareness
So, I posted one post, and this is what is said:
“I added sections to togetherforsharon including and for PwP:
Artists
Musicians
Poets and poets
Painters
Photography
Comedians/Improv
Athletes
And any other talents let me know!
If you are a PwP and would like to be included message me or email togetherforsharon@gmail.com
This is fully voluntary, and my goal is to gain more attention for awareness and hope for a cure to your website and to your inspiring work. I want nothing in return!
Sending love and support always”
So, this one Facebook artwork group for PwP that creates art exists. My idea was to add artists and put their direct links and contacts so anyone who loved art could buy it or contact the artist directly. I would add it free and do it all voluntarily. I do not accept or want anything in return but awareness. The problem is we need more awareness.
A few weeks later, one group administrator sent this odd email below. Be advised I do not know the person, never met them before, and have never spoken in my lifetime. Usually, if someone writes to a person, professionalism or kindness in the Parkinson’s community is present but not with this unruly Facebook troll.
From a Facebook art group (Name changed for writing purposes as there are many provided) administrator sent to my private Facebook messenger:
“Please don’t use our group to scout for artists to add to your own pool unless you can tell us how this will directly support people with Parkinson’s? We need to protect our members from any potential exploitation. I hope you understand.”
I was shocked. I wasn’t sure who would dream of what a “scout” is or use the word “exploitation” for PD awareness. It was a first for me at least. This individual did not know me, never asked a question, and only sent this rude, unprofessional attack on messenger, which is not the way to grab my attention, let alone gain any response. I responded positively and provided my background, career, and the website. They responded yet again rudely and did not want to take a moment except to judge, ridicule and condemn so I blocked the disruptive administrator and moved on. There was no hope with this one specific individual and never will be. It was pointless to respond or converse further as their behavior, attitude and tone is acceptable especially when this is all for awareness and hope for a cure.
Finally, this rude administrator seemed to mute the post, so I left the group. I share this because, yet again, I fight for awareness and hope for a cure, but we are not always a family in this fight when we genuinely need to be. This was a stranger, someone who may run a group, but in the overall scheme of things, she did a disservice to those who would have gained publicity and awareness and learned there are people like me out there willing to fight for them, support them, and send love without wanting a thing in return. This Facebook art group administrator blocks that awareness, and it is deeply saddening that there will be many artist journeys I will never be aware of. They will never know there are people like me out there who will never stop fighting until there is a cure, and I want yet again nothing in return. I must continually state that in 2024, I am happy, too. Those PwP group members may never realize they are never alone. Why? Because one person, whatever the reason, felt they needed power from a computer to control thoughts, needs, and individuals with PD’s ability to communicate, share, and realize there are so many who want to help, care, and send support to everyone. I can tell you I do not believe I ever have to justify myself except to my mother, wife, or the police. Not to an unruly Facebook trolling administrator.
The Positive Outcome
With any negative area in life, you have to flip it to a positive, which I always will. I was inundated with many new messages, love, hope, and support. I smiled and am thankful to have met many incredible individuals throughout the PD community. Never let one negative person who does not know your character understand people can care and not want anything in return. Sadly, that person likely had a negative issue with someone else, but no one judges all people on their past experiences. This further hurts the PD community and all artists affiliated with that Facebook Group because she limits their speech, ability, and possibility for awareness worldwide. She likely doesn’t even realize it. We fight onward and never stop…. Until there is a PD cure.
Matt’s wife, Betsy:
Social media is a fantastic tool for reaching people all over the world! However, just like anything else, social media can take a dark turn if used for nefarious purposes! People can steal your identity and ideas and set up fake profiles where they pose as you or your business, asking people for money and doing scams! I have seen on social networks where people pretend to be celebrities and successful influences to scam people!
We must be aware!
I also interviewed a former human trafficker who told me how he chose his victims on social media platforms! Parents or guardians, please know what your child is doing online! How does the dark web affect advocacy?
Well, if someone steals your identity and does scams in the name of your organization or business, that is a considerable problem to straighten out! I have been fortunate so far not to have that problem. I have had a problem with people reporting me to a specific platform and being penalized for advocating for Alzheimer’s! We must be careful how we use words, or we will be penalized! I was on a show discussing caregiving, but another guest was discussing COVID-19, and I was penalized for being associated with that show! So be careful when you go on a show and what you say on social media!
AI is another excellent tool that can be disastrous if used with evil intent! Social media platforms are getting very strict with what you can say or write! I recommend staying fully aware of what is going on your social media platforms!
Report any false profiles immediately! If you are threatened, please get in touch with the police! We are in a time when no one can find your address and phone number!
Stay aware and informed and be safe!
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George’s Biography
Dr. George Ackerman is from Brooklyn, N.Y. He now resides in Florida and works in the fields of law, police, and education. George lost his mother, Sharon Riff Ackerman, on 1/1/2020 due to Parkinson’s Disease.
George wanted to honor his mother and continue to help in the Parkinson’s awareness cause, but he did not know how to bring about change. With my family, we started TogetherForSharon® to keep my mother, Sharon Riff Ackerman, ‘s memory alive and share the message of Parkinson’s Awareness and hope for a cure.
Today, https://www.togetherforsharon.com/ reaches thousands of individuals across the country to raise awareness of Parkinson’s disease. George currently interviews individuals throughout the Parkinson’s community, including various foundations, caregivers, and Parkinson’s warriors, to help share their stories and causes.
Betsy’s Biography
Betsy Wurzel graduated from Middlesex County Voc-Tech High School, where she received a License for Practical Nurse training and a diploma. Betsy has worked in various hospitals and a state facility caring for severely disabled clients.
Betsy began her advocacy when her husband Matt was diagnosed with Early-onset Alzheimer’s and was disappointed and frustrated with the medical community. Betsy created and founded the # Kick Alzheimer’s Ass Movement Group on Facebook in February 2019, so no one should ever walk their journey alone during caregiving or after caregiving!
Betsy was discovered by Jeanne M White, who is the Station Manager of Passionate World Talk Radio, in June 2018. Betsy talked weekly on Jeanne White’s Caregiver Connect series and encouraged other caregivers to share their stories. Betsy started Chatting with Betsy show in September 2019. Betsy wants people to know there are resources to help them and they are not alone! Chatting with Betsy covers a variety of topics. Betsy was nominated for the Caregiving Visionary Advocate Award in Nov 2021 and received the award!
Matt was and will always be my inspiration for all I do!
References
Ackerman, G. (2024). PwP Around the World. Retrieved from https://www.togetherforsharon.com/pwp-throughout-the-world/
Ackerman, G. (20203). About Us. Retrieved from https://www.togetherforsharon.com/about-us/#mission
Photo Credit
AdMind (2024). How AI is Exposing the Dark Side of Social Media Marketing Retrieved from https://www.admind.ai/en/2023/04/20/how-ai-is-exposing-the-dark-side-of-social-media-marketing/