This year, the ALS Therapy Development Institute (ALS TDI) has 15 people who will be running at the TCS New York City Marathon. Each and every one of them was inspired by someone in their life to run for ALS research at ALS TDI. You can read more about why they run and donate to their fundraising efforts below.
"My name is Katlyn Elliott and I am a 26-year-old from Peterborough, Ontario, Canada. My mother passed away from ALS when I was eighteen and for the many weeks following, I grappled with questions such as ‘how do you replace the irreplaceable?’ and ‘why do bad things happen to good people?’ These thoughts were part of the long dark months that I spent grieving for my mother. My aunt was diagnosed with ALS just two years after. This was a very difficult time for our family as it brought back a lot of very painful memories, but worst of all, I was forced to helplessly watch my cousins go through the same pain and grief I had two years prior. I am currently a 3rd-year medical student with the goal of becoming a personable, empathetic and passionate physician that will positively impact the lives of my patients."
Hindy Cooper Ginsburg
"Last year, I ran my first NYC Marathon with ALS TDI. It was truly the experience of a lifetime and the gang at ALS TDI has become like family ever since. I am proud and humbled to have been given this opportunity again. Twelve years ago when I was just 24 years old, my mother, Miriam Cooper, died of ALS after a too-short battle with the terrible disease. She was just 58 years old. If that wasn't enough to make me want to fight ALS with everything I have, my fabulous older sister, Devorah Schochet, received that same devastating diagnosis on February 13, 2013. The way that Devorah's muscles are degenerating seems eerily familiar to my family. Devorah is only 45 years old and has four children ages 11-23. She fights her illness every day with a smile, humor, and unbelievable strength and she has been fighting it for over six years! Devorah still manages to inspire countless people and make them laugh through her blog. She is truly my inspiration."
Eliza van Heerden
"My mother, Cody van Heerden, was an avid runner, walker, and hiker. My mother got me hooked on running when I was 13 and I have not stopped since. It was running that has also helped me cope with what happened to my mother, my family, and our community over the 7 months following her diagnosis until her death. Whenever I have been overwhelmed, I lace up my shoes and run to Little Long Pond (in Maine) or Central Park (in New York) and hit the trails to clear my mind. Throughout the last year, I got to feel first hand the support of an amazing community -- we had friends and strangers (who have since become friends) help us in every way possible and we were lucky enough to have access to whatever therapies we wanted to try. Unfortunately, the current scientific advances were not enough, and on September 12, 2018, we lost my mother, friend, and mentor."
"I am inspired to run by my good friend Ren De Beer. My son Thomas and Ren’s daughter, Caitlin were born days apart almost 12 years ago when we were living in the UK. Although work has since driven us to different corners of the globe, his diagnosis of ALS almost 2 years ago and his courage in navigating an almost unthinkable journey has been nothing short of inspirational. Since diagnosis in late 2017, Ren has chosen to create his own ‘Road’ and his own story. He started training for Triathlons and with the help of friends has completed a number of races including recently a marathon. He has traveled the world visiting me and my family in Bangkok, Thailand as ALS continued to impact his independence."
"As many of you know my father in law, Roger Pierson, lost his battle with ALS in June of 2018 and is the inspiration for my partnering with the ALS TDI team. Roger led an incredibly active life. He was known for taking long bike rides on Patriot’s Path and had a huge passion for golf and skiing. Roger was difficult to keep up with on the slopes, even into his fifties. After being diagnosed, Roger continued to bike as much as possible and used an electric bike to assist him when he could no longer pedal on his own. I watched my wife help care for him with her mother and sister when ALS took away his ability to move, eat, and take part in daily life activities. This disease puts an extreme amount of emotional and financial strain on any family it touches. Roger felt very strongly about the work that ALS TDI is doing to find a treatment and eventually a cure for this disease. By running this marathon, I am honored to continue supporting the effort to find a cure now that Roger can no longer do so."
On Sunday, November 3, I'm proud to be running as part of Team ALS TDI for the upcoming TCS New York City Marathon. I will be running 26.2 miles on behalf of the The ALS Therapy Development Institute, an Official Charity Partner. Your donations fuel our continuous efforts to advance promising drugs and help END ALS. Please help me by making a donation. Thank You!
"I will be running in memory of my dear friend Jose Cofino and my boyfriend's brother, Ken Melanson. How do we live, how did they live? Live your life with as much adventure as you can take, laughter as much as the belly can handle, and love as much as you can give. Miss you and love you."
"My name is Greg Moroney and I am a friend of the Haberstroh Family. When their mother Patty was diagnosed in 2017 with ALS, the family set off on a mission. To ensure the donations reached the right hand, they teamed with the ALS Therapy Development Institute in Cambridge, Mass because the nonprofit biotech organization is focused 100% on ALS research. This will be my first marathon ever so to do it on such a big stage is a tad daunting. I haven’t been consistently running since cross country in high school 20 years ago. With the unbelievable support of the ALS TDI team and the Haberstroh family, not only am I going to crush this race, but we are not going to stop raising funds until ALS TDI can get closer to a cure!"
"Betsy, my mother in law, was diagnosed with ALS in late 2004 and after a very progressive deterioration she passed away in the fall of 2005 at the age of 54. I was close to Betsy and my wife’s family in the final months of her disease and this has made an everlasting impact. I first met Betsy in 2002. During our first family get together it was clear we had a very good connection and shared the same type of humor. If Betsy had still been alive, she would have witnessed her three daughters growing up and becoming mothers themselves. Today, she would have been a proud and very caring grandma of five boys and one little girl."
"My friend, best man, and all-around great human Jeremy Schreiber was diagnosed with ALS in 2018. 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. Jeremy and I used to go out for dinner in Manhattan on a regular basis. Over time, the progression of the disease became clearer every time we saw each other. You see your best friend lose his grip on life in slow motion while knowing that he is the same awesome, funny, life-loving guy he's always been. 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."
"My older brother was diagnosed in March of 2015. We had taken the Ice bucket challenge like countless others before, dumped the ice, took a breather and laughed and moved on. Since 2015 we no longer laugh. My family and friends felt helpless against this disease. We witnessed ALS rob all the joy that was my brother. On April 14th, 2017 ALS stole my brother and with that everything changed. So through ALS TDI we are taking the fight to ALS. Running for those who can’t, being a voice for those who can no longer speak, fighting for those who are losing the ability to fight. Your help and donations are greatly needed. We have to find a cure for this fatal disease. Please help us spread the word about ALS."
"In 2011 we lost my dad to ALS. What had started out as hoarseness in his throat and mildly slurred speech turned out to be the bulbar onset form of ALS which affects speech, swallowing and breathing first. For a man who had been healthy his whole life and was known for his gift of speech, love of food and boundless energy this was truly a huge shock. He had always been a vibrant man who loved diving into the waves at the beach, playing the piano, working in his garden and could fix just about anything that needed fixing. He was our steadfast rock and our hero."
"My dad, Joe Shambo, passed away in 2005 after living with ALS for seven years and inspired me to keep up the fight for the past 14 years. I learned what ALS was when I was six years old and have wished for a cure ever since. At the time I thought "dad has bad hands" but quickly learned it was far more devastating. Prior to my dad's diagnosis, he was an avid runner, skier, athlete, and outdoorsman who would have joined me in my first marathon if he could. He ran the Boston Marathon in 1993 not knowing five years later he would be diagnosed with ALS. From age 6 to 13 I watched his muscles slowly deteriorate. I was growing stronger and he was getting weaker. Since my dad’s death, I’ve made many friends through ALS TDI who have ALS or have been impacted by it. I don’t want any more families to be affected by the monster that is ALS. Running a marathon has always been on my bucket list so LFG and FALS!"
"As a healthcare professional, I work with ALS patients and their families who have been affected by this horrific disease, and it is both heartbreaking and challenging to not be able to do more... now I can... and I am! I am dedicating this 12th marathon to Stanley Rubenstein, the father of a family friend who lost his battle to ALS but remains the inspiration behind Team Follow Me."
"I’ll be running in memory of my dad who passed away from this terrible disease on July 12, 2017, at the age of 66 and less than six months after his initial diagnosis. My dad isn’t the only person in my life to be impacted by this disease. Bob Brooks, the father of my long-time friend Maggie Brooks, also lost his life to ALS. Bob was diagnosed with ALS in 2013. At the time of his diagnosis, he was in otherwise perfect health, still playing softball in his local league. He had bulbar onset ALS, so he first lost his ability to speak, eat, and breathe on his own, followed by a total loss of mobility. He died in 2015 at the age of 63."