Last Sunday, ALS United Greater New York held their 17th annual fundraiser walk at the Walkway Over the Hudson in Highland. The event raised money for ALS care, local advocacy and for research.

 

The acronym stands for Amyotrophic Lateral Sclerosis, more commonly known as Lou Gehrig’s disease, named after the legendary New York Yankee first baseman Lou Gehrig who succumbed to the disease at the age of 37 in 1941.

 

ALS often presents with gradual muscle stiffness, twitches, weakness, and wasting. Motor neuron loss typically continues until the ability to eat, speak, move, and breathe, without mechanical support, is lost. 

 

Kristen Cocoman, president and CEO of ALS United Greater New York, said since 2009, when the walks began, they have raised $2.9 million.

 

“We began the walks so that we could expand into the Hudson Valley. At the time we didn’t have a nurse, a social worker or enough services dedicated to this area and now we’ve been able to support a satellite clinic here,” she said.

 

Cocoman said they offer transportation to clinic appointments, home visits to provide guidance for those living with ALS and also assessments to determine if a home needs to be modified to accommodate a wheelchair or a walker, and also financial help through grants. She also thanked sponsor Sculptor Capital Management for their support.  

 

Cocomanintroduced committee walk chairs Les McCarthy and Linda Quinn. Les said, “Most of all we look forward to a cure and in the meantime we walk and we pray. I will close with words from the late Kevin Trotta, who we lost 10 years ago: “This may seem like a Lou Gehrig party or a walk in the park, but it’s not. It is an army crossing the Walkway with a common enemy. We are at war and we are not going to stop until we beat this thing.”

 

Cocoman welcomed the King family to the podium. They are  walking as Team Grampa Eddie, and have raised more than $9,000 for ALS United New York this year.

 

Grampa Eddie’s son introduced his young daughter Susie who said, “Today I’m going to walk for my Grampa, Edwin King. He was a farmer all of his life and grew vegetables and raised cows. He loved the land and knew a lot about the soil. He also loved classical music, reading the Bible and books about farming. He was married to the love of his life, my Grandma Susie, for over 40 years. Together, they enjoyed hiking, biking and raising kids. They had 5 kids and 14 grandchildren. Grampa spent time with each of his grandchildren talking about their studies and sports and musical instruments.

 

In September of 2023 Grampa was diagnosed with ALS and it was difficult for both him and grandma, but their faith and love kept them going. He died a year ago in July and today I am proud to walk in memory of Grampa Eddie and to keep his legacy going.”

 

Eddie’s son said his father’s diagnosis at 67 forced him to face the reality of losing the ability to do the things he loved.

 

“The battle he fought to come to terms with reality was a tough one, but I have to say that he won. ALS did take his physical ability from him but it couldn’t do anything to his strong spirit and hard won peace. For all of you in our greater ALS family who are here today, know that ALS can never take from you your fortitude and you inner strength, so keep on fighting.”

 

Cocoman concluded the opening ceremony by saying, “We are all part of this incredible mission to raise awareness, to discover treatments and a cure and to provide support to all of those living with ALS today and tomorrow Today, we are making impactful strides toward a cure. Together we are relentless against ALS and I am positive that together we will end ALS. Thank you.”

 

More information and support is available at ALS-NY.org or by phone at 212-619-1400.