NY.gov Portal State Agency Listing
New York State Banner
Skip to Content | Skip to Navigation    

Hearts for ALS New York: Making a Difference in the Fight

In June 2005, a golf outing in western New York changed Dennis Wright's life.

While playing in the New York State Department of Transportation (NYSDOT) golf league, where he was teamed with his friend Jeff Dunlap, they noticed Jeff's arm twitching. These symptoms, called fasciculation, along with numerous tests, would later support a diagnosis of amyotrophic lateral sclerosis, (ALS), in August 2005. The prognosis for those diagnosed with ALS is always grim. Fifty percent of patients with ALS live three to five years, 20% live five to ten years, and 10% survive ten years or more.

Jeff passed away in August 2009.

Deciding to Make a Difference
Since that day in 2005, Dennis Wright and a group of friends, mostly surviving spouses, their families or people living with ALS (known as PALS) have made a difference in countless numbers of other's lives.

While visiting a friend affected by ALS in Wellsville, NY, Wright said the conversation focused on one major issue, "we needed to do something more for the PALS. We needed to find a way where we could write checks right now", to people in need. After researching various options it became vividly clear that starting their own not-for-profit was the best solution to accomplishing their mission.

The meeting in Wellsville took place in fall, 2009. By February, 2010, Wright and his friends had established Hearts for ALS NY, which became a 501c3 in May 2012.

The mission? Making the lives of ALS patients and caregivers as comfortable as possible in ten counties in western New York. "Hearts" is a 100% volunteer organization and every dollar raised goes to support the people living with ALS in the target counties.

"We will never have a paid position in 'Hearts'," Wright said.

Recently, at the 8th Annual Jeff Dunlap Celebration of Life Golf Tournament, supported by Hearts for ALS NY, more than $13,000 was raised, more money than any of the organization's fundraisers to date. The cash will be used to support a local resident diagnosed four years ago with ALS at the age of 23. It's one example of "Hearts" making a difference. It's part of the legacy left by Jeff. The 9th Annual Jeff Dunlap Golf Tournament will be held in July 2014 and will again benefit a person living with ALS in western New York.

Find Out More
In addition to raising funds for those fighting ALS, Hearts for ALS NY raises awareness about early diagnosis of ALS, and what the symptoms are. "Hearts" can also provide personal support by offering patient services, provided by caregivers, who have lived the life after the fateful diagnosis, "I am sorry to have to tell you, you have ALS." Jeff's spouse Pam heads up this initiative. "We can make a difference, working for the PALS," said Wright.

You can visit Hearts for ALS NY(External Link) on their website, Wright said.

What is ALS?

According to the ALS Association, amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

A-myo-trophic comes from the Greek language. "A" means no or negative. "Myo" refers to muscle, and "Trophic" means nourishment–"No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening ("sclerosis") in the region.

Did You Know? ALS Symptoms
As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.

Anyone wanting more information can contact Hearts for ALS NY at PO Box 272, Avon, NY 14414, or call (315) 427-7532. Email: info@heartsforalsny.org

For more information about ALS, please visit the ALS Association's web site.(External Link)