$101,329 / $100,000
My best friend Jeremy Schreiber was diagnosed with ALS. I am running the 2021 TCS NYC Marathon raising funds to help fight ALS.
Welcome to my fundraising page!
Update 10/30/21:
Jeremy passed away on 10/29/21 peacefully in his sleep.
Jeremy had a profound impact on my life. His generosity, kindness, positivity and humor will live on in the many ways he has touched the lives of the people who knew him. His perseverance and dedication to not being defined by ALS was beyond inspiring and a reminder of what he might have accomplished were there a cure for ALS.
I would like to say a few words about Jeremy’s parents, Ronnye and Fred. As a new father with a 20-month-old myself, having seen the love, care, inventiveness, exhaustion, worry, dedication and feeling of being overwhelmed that they went through every day, I can only say that no parent should lose a child, and not to a disease like ALS. Caregivers of people living with ALS have very little to go off of, often left to improvising and learning by doing. Jeremy was lucky to have had Ronnye and Fred as his parents, and a loving girlfriend in Melissa who stood by his side until the very end.
Hopefully one day I can tell my son about ALS and he will only know it from history books.
That is my dream. #endals
Continue to read the original story:
My friend, best man, and all around great human Jeremy Schreiber has been diagnosed with ALS in 2018. The message above was the moment all of our worlds were shattered.
You may have heard about ALS, also known in the US as Lou Gehrig's disease, during the Ice Bucket Challenge that went viral in 2014. Additionally, many people know about Stephen Hawking's struggles with the disease as they were chronicled in the 2014 movie The Theory of Everything.
ALS is a heartbreaking disease that is not yet well understood. Research into finding treatments is underfunded.
Each year, the ALS Therapy Development Institute (TDI) chooses a handful of runners - 15 of us in 2019 - to raise money running the NYC Marathon on November, 3rd 2019. You will be able to cheer see us during race day wearing our ALS TDI jerseys.
I am truly humbled to be able to help, and hope that you, too, will be able to support ALS research and my friend Jeremy in his fight against ALS.
Let me tell you about Jeremy
Jeremy and I have been friends for over 10 years. Just after I had moved to New York in 2009, we happened to stay in the same ski house in Vermont and became instant friends.
Over the years, we were groomsmen at each other's weddings, traveled together, sailed together, ran the Brooklyn Half Marathon together and most importantly: We have been the best of friends during all highs and lows.
Trip to San Francisco
Skiing in Mt. Snow in VermontSailing in the Long Island SoundAfter a morning run in Central Park
Sedar at Jeremy's parents house
At Formula 1 in Austin, TX in October 2016
Running the 2017 Brooklyn HalfAt a summer party in July 2017
During my bachelor party in Portugal November 2017
At my wedding in March 2018
In Fall 2018After a benefit concert in December 2018
Jeremy and I in May 2019
In 2017, symptoms began to emerge, which in 2018 were confirmed to be ALS. It's crazy how one day a disease like ALS is something you heard about and then it can affect your closest of circles within a matter of months.
When I started learning about ALS from Jeremy and then reading more about it myself, I was speechless about how little is known about what triggers the disease, or what kinds of treatments are available (none that work). There really isn't anything, we're in the dark ages of ALS research.
ALS does not just affect the person with the disease. Relationships with loved ones quickly show how durable they really are, friendships come and go, and on the flipside people start showing up in the most unexpected of ways. All of that adds another layer of emotional stress while the person affected is fighting for their life, loosing the ability to walk, eat, speak.
Jeremy and I used to go out for dinner in Manhattan on a regular basis. One of our favorite spots is Park Avenue Spring/Summer/Fall/Winter. Over time, the progression of the disease became clearer every time we saw each other. Walking across the sidewalk getting into a cab (a process we don't even think about), became an obstacle course for Jeremy. Food required pre-cutting, the water glass required a straw. When he sat down trying to set aside the crutches, I would assist him in getting the crutches out of his hands as they became stiffer and stiffer. You see your best friend loose his grip on life in slow motion, while knowing that he is the same awesome, funny, life-loving guy he's always been.
Jeremy once gifted me a book called The Gentleman's guide to be a man (I got the hint). It was funny, because I always thought if there had ever been a genuinely nice guy, the kind of guy they would write a Gentlemen's Guide after, it would be Jeremy.
Jeremy now lives with his parents, who care for him full time. At this point, he is unable to walk or speak.
Please help me fund research to fight ALS and support Jeremy and his family with your kind donation.
About ALS Therapy Development Institute (TDI)
ALS Therapy Development Institute is the world's largest non-profit biotech discovering and evaluating potential drug compounds to end ALS. Our innovative science and cutting edge approach have resulted in the identification of AT-1501, a promising treatment for ALS. We also pioneered the ALS Precision Medicine Program, the world's premier program and partnership with ALS patients to discover additional potential treatments. Your contributions will help us move forward faster.
