Patrick and I started this campaign for Jeremy Schreiber, as a way for his friends, family, and others to show solidarity with Jeremy and help offset the mounting costs of living with ALS for him and his parents, who have all sacrificed so much already: physically, emotionally and financially. We are so appreciative of any donation, and any sharing on social media. Together we are hoping to reach the goal and quickly, as time is not a luxury with ALS. Despite the devastating diagnosis and resulting personal upheaval, Jeremy is not someone to give up without a fight.
Please take the time to read Jeremy’s story included below, donate if you can, and share with as many people as possible!
“My name is Jeremy Schreiber. I was living a great and happy life in New York City with my wife of two years, had a soaring career in software sales, and a deep passion for running and sailing; Until everything changed.
In March 2017, I noticed my right foot wasn’t keeping up with my left and was causing me to trip. I didn’t think much of it until my primary care doctor told me this was a much more serious issue and referred me to the first of what would be many neurologists.
I was tested for everything from AIDS to Zika. MRI’s, CT scans, EMG’s, blood tests and painful spinal taps - The results were inconclusive, and the bills were piling up rapidly. The fear of the unknown was causing all sorts of stress – Weight loss, sleeplessness, lack of focus, and the depression was starting to get worse.
Still not receiving answers, I enrolled in the second opinion program at the Mayo Clinic. Guided by Dr. Andrew McKeon, my parents and I spent a week in frigid Rochester, MN repeating all the painful tests hoping for answers. As every test result came in, we tried everything we could to interpret each result. We laughed and cried with happiness when we thought it was something simple and panicked and cried together when the simple things were ruled out. We were physically exhausted from the emotional ups and downs.
On the last day at Mayo, January 5th, 2018, I was diagnosed with ALS (Lou Gehrig’s Disease, amyotrophic lateral sclerosis).
Now 38 years old, my world has been turned upside down.
My body was quickly failing me. My balance and walking were affected making me fall many times; my hands could barely hold a fork or type an email; And getting dressed was nearly impossible. The fear and anxiety of daily living were increasingly more paralyzing.
Moving to my parents house in order to receive the extraordinary care I would need to live out the hardest time in my life meant leaving everything about my life in New York City behind. I was crushed.
A New Chapter and Where We Need your Help
After making the transition to my parent’s house, it became obvious the house was not set up to accommodate someone with my needs. Things you don’t typically think about, like widening doorways, renovating the bathroom so I can roll in with the wheelchair, adding ramps, and installing stair lifts to get me from one floor to another. This doesn’t even touch on the need for wheelchairs, a specialized van, long-term clinical trials, lawyers, in-home nursing and technological devices to cope with my failing body. None of this is covered by insurance.
How Can You Help?
We need your support to make the changes necessary and cover the costs of things that insurance won’t. Because of the progression of this disease, we need your support as soon as possible.
Please help us reach our goal by sharing this fundraising campaign on your Facebook and Instagram with your friends, family, and colleagues.
ALS, also known as Motor Neuron Disease or Lou Gehrig's Disease, has no cure, yet.
The average lifespan from diagnosis is two to five years. I’m not sure what my journey will bring because every individual’s experience with ALS is different, meaning there are a lot of unknowns for my family and me. What I do know is that I’m focused on doing everything I can to fight this disease and delay its progression into the more debilitating stages.
As many of my family, friends and coworkers know, I have a strong positive mental attitude and a passion for life. So as difficult and sad as this diagnosis is, I remain positive, and I gather my strength from the outpouring of love and well-wishes from my family and friends, my employer, PerfectoMobile.com, and the men’s group, MDI (mentordiscoverinspire.org ).
No one knows how long my fight will last, however I have the will and determination to battle longer than the average person, and I plan to be here for another 10+ years. Unfortunately, this is already creating a tremendous financial burden on me and my family. I need your generous help with contributions to help me fight this awful disease and to allow me to have the highest quality of life possible. Thank you for your help.”
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