On October 20, the ALS Association held its 16th annual local fundraiser at the Walkway Over the Hudson. In their online pitch, the association states that, “Every 90 minutes, someone is diagnosed with the disease and someone passes away from it. This fatal disease can strike anyone at any time. It takes away the freedom to walk, talk, run, dance, laugh, hug, eat and to breathe. We fight to give that independence back – and help empower people to live life to the fullest.”

 

The Association states that Amyotrophic Lateral Sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis. ALS can strike anyone regardless of age, gender, nationality, or ethnicity, although it is primarily an adult-onset disease. Currently, there is no known cause or cure.

 

ALS is often referred to as Lou Gehrig’s disease, named after the famous New York Yankee baseball player who succumbed to the disease in 1941 at the age of 37.  

 

The ALS Association leads the way in global research and helps 30,000 Americans living with ALS. Your gift today will help find a cure for ALS, while providing care and support to families right here in your community.

 

Jordana Newler is the Director of Fundraising and Special Events for the ALS United for Greater New York. She starts planning for the event a year prior to the walk.

 

“The funds go to patient care, research and advocacy and to where it is needed,” she said. “We do six events per year in different regions and this is the Hudson Valley region.”

 

Newler said they raised more than $180,000 at this event and over the past 16 years they have raised a total of $2.5 million.

 

Kristen Cocoman, who is the President and CEO of ALS United of Greater New York, oversees the team and the staff in the Hudson Valley. She  is hopeful they will ultimately raise $200,000 from this event, highlighting the fact that in the past 10 years there has been significant progress in the development of medications that are slowing the progression of the disease.  

 

“The funds we raise at this walk and all of the walks supports our programs, services and the nurses and social workers that are working directly with the families. They do home and virtual visits with the families and do home assessments for accessibility. We also provide equipment to the families such as wheelchairs and grants to families to cover expenses or to make home modifications. Basically, we’re open to helping families in every way possible.”

 

Just before the walk commenced, Corey Glaser accompanied his mother Dani to the podium to speak about the impacts of the disease.

 

“We’re so incredibly grateful to be joined today with family and friends from near and far and we feel the love of those who couldn’t be here with us in person,” he said.

 

Corey said his mother was diagnosis with ALS earlier this year.

 

“The news came as a shock to her, to our family and to all who love her. As I’m sure many here who can relate, this incurable disease is impossible to wrap our heads around. Watching this disease slowly take its toll on a loved one is an incredibly painful experience. We felt sadness, anger, frustration and worst of all, helplessness. We find ourselves at a loss as to what we can do for her. Our family’s participation in this Walk started as a way for us to show our support for her. We thought we’d have a small but mighty group to support a small but mighty woman; we had no idea it wold turn into this, nearly 100 strong today and over $80,000 raised. What we should have known is that as soon as our mom shared her story the community that she has built and surrounded herself with would jump at the chance to join her. The outpouring of love and support she has received reflects who she is, how much she means to us and how many lives she’s touched. This Walk gives us all the opportunity to do something for those whom we love with ALS.”

 

Corey said this year’s walk today has taken on a greater meaning.

 

“We’re here not just to support her, we’re here to support each other and she’s not going through this alone and we all need to be held up too. We’re so grateful to support this wonderful organization, ALS United Greater New York, which directly benefits patients and families in the region. It is people like them who humanize the experience of this awful disease and gives us a chance to rally around those who we love most. On behalf of Dani’s Defenders, we thank you all so much for this opportunity to share our story and join this incredible community.”

 

Dani’s Defenders team raised $85,933 for the ALS Association, the highest amount for this year’s Walk.