About the 90 Foundation

Our mission is to support the most promising research to find a cure for ALS. We imagine a world where ALS is a treatable and manageable illness, rather than an underfunded and terminal disease, which devastates the lives of individuals and their families receiving a diagnosis every 90 minutes.

ALS, or Lou Gehrig’s disease, is a rapidly progressive and ultimately fatal disease. ALS robs you of the ability to walk, talk, eat, drink, and breathe, while leaving your fully-functioning mind trapped. There is no known cure, and the few treatment options that exist extend life a short period of time, around 2-3 months. Death usually occurs 2-to-4 years from diagnosis.

Doctors and researchers are leading the charge to find a cure, but are in desperate need of funding. With your help, we can accelerate the treatment and cure for ALS from decades to years, save the lives of tens of thousands of people, and create a future where ALS isn’t a fatal diagnosis.

We created the 90 Foundation, a 501(c)3, to raise money for research to treat and cure ALS. We are dedicated to making sure that 100% of the money we raise goes directly towards research and are working directly with organizations like the Houston Methodist Neurological Institute and ALS Therapy Development Institute to ensure that happens.

Board of Directors

Jay Smith – Jay is CEO and Founder of Livid Instruments, an Austin-based music technology company. Jay lives in Austin with his wife, Missy, and daughters Loghan (7) and Peyton (4). Jay was diagnosed with ALS in May 2014.

Bob Hebron – Bob’s daughter Beth was diagnosed with ALS at 25 in 2013. Since then he has been focused on finding quicker and more cost effective methods to bring treatments through clinical trials. He is a Senior Vice President at New York Life.

Jessica Clark MD – Jessica and her husband Nick have been close friends with Jay for over twenty years and hail from the same hometown, Doylestown PA. Jessica completed her medical degree at Texas A&M and currently works as a Physician at Tulane University.

Kimberly Oakes – Kim is Jay’s big sister and lifelong fan and rival. Currently, Kim lives in San Francisco and works for the KIPP Foundation. Kim imagines a world where sisters don’t have to watch little brothers succumb to ALS.

Adam Smith –  Adam is Jay’s brother and lives in Chicago, where he is the Director of Marketing at ACCO Brands, a consumer goods company. Despite Jay’s recent ALS diagnosis, the brothers have continued to photo bomb their parents’ attempts at family photos.

Gene Smith – Gene is Jay’s dad and recently retired after a 40-year careers working for the YMCA, most recently as the CEO of the Central Bucks Family YMCA in Pennsylvania. Gene and Barb (Jay’s mom) just celebrated their 43rd anniversary and live in Doylestown PA.

Advisory Board

Mathew Bellina – Matthew attended to Virginia Tech where he graduated and was directly commissioned into the Navy in May 2005. His military service has has taken him to Korea, Japan, Bahrain, Djibouti, Tanzania, Kenya, Ethiopia, Germany, Italy and Spain. Matt was diagnosed with ALS in April of 2014 after experiencing years of symptoms and currently resides in Holland, PA with his wife and kids.

Sarah Coglianese – Sarah is a writer and former runner who was diagnosed with ALS in 2012. She lives in San Francisco with her husband and 4-year-old daughter, and blogs regularly at speed4sarah.com, a site devoted to raising awareness of ALS through the faces and stories of people living with the disease.

Stephen Finger – Stephen Finger is an economics professor at the Moore School of Business at the University of South Carolina. Husband to Cara and father to Mary Adair and James, he was diagnosed with ALS in 2013. He started a blog chronicling his family’s inspirational journey living with the disease at http://stephenfinger.wordpress.com.

Peter Strobel – Recently retired custom home builder, he lives in Dripping Springs, Texas with his wife of 32 years Christina, their amazing daughter Abby, two dogs and a kitty cat. Pete and Christina are also the proud parents of two wonderful sons, Ben and Bryan and in laws to two amazing daughters in law, Katie and McKena.

Pat Quinn – Pat is a 31 years old and was born and raised in Yonkers, NY in Westchester County. He is a graduate of both Iona Prep and Iona College. His life changed on March 8, 2013 when he was diagnosed with ALS. Pat is responsible for creating the ALS Ice Bucket Challenge and and lives in New York with his wife Jenn.

Jay’s story

During May 2014, I won a Popular Science Invention Award, celebrated my wife’s 37th birthday, went indoor skydiving to celebrate my daughter’s 7th birthday, and was diagnosed with ALS.

Lou Gehrig famously said during his farewell speech that he was “the luckiest man on the face of the earth.” I always thought that was just a positive spin on receiving a terminal diagnosis. But now I get it. I have a blessed life. The company I founded, Livid Instruments, just celebrated 10 years in business and we are finally enjoying the success of all of our hard work. I am surrounded by an amazing, large and loving family and have amassed some of the best friends a person could ask for, both old and new. This year I will celebrate 11 years of marriage to my best friend, Missy Mekosh, and have two of the greatest little girls (Loghan 7, Peyton 4) that a Dad could ask for. So I get it Lou, I too feel like the luckiest man alive.

I’ve been dealt this hand and I am playing to win. Since being diagnosed I’ve continued to wakeboard with my friends, go camping with my kids, ride off-road motorcycles, started a new form of martial arts and don’t plan to stop anytime soon (follow my Facebook page for proof!). I will continue to take my company into new markets and become a better father, husband, boss, son, and friend. ALS isn’t an incurable disease it’s an underfunded disease. With proper funding, research, and treatment, the thousands of soldiers, athletes, fathers, mother, sons, and daughters diagnosed with this disease won’t have to die with it. I plan to change that, I know I can.

If you’re reading this, you may feel the urge to be sad, angry, or have pity. Please don’t be sorry. I’m not and you shouldn’t be. I’ve taken this time to reflect on how much love I have in my life and it’s made me happier than I’ve been in years. Take this time to reflect on your life and be thankful for what matters most. Please take a moment to help us end this disease. Finding a cure is up to us. I plan on being around for the cure of this disease. Thank you for taking part in my journey.