There’s support for those fighting cruel disease

May is ALS Awareness Month. ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig disease, affects about 30,000 Americans at any given time, and approximately 5,600 people in the U.S. are diagnosed every year. ALS Awareness month is a campaign to draw attention to, bring awareness of the disease and raise funds for research to find a cure.

ALS is a progressive neurodegenerative disease that destroys the motor neurons in the brain and spinal cord that control muscle function that enable a person to walk, talk, swallow and breathe. The life expectancy for 90% of people diagnosed with ALS is two to five years, although some of those with this disease may live more than five years, while only 5% live more than 20 years. Other than Lou Gehrig, New York Yankees first baseman, for whom the disease was best known, Stephen Hawking is no doubt the best known case of ALS.

While Hawking defied the odds and lived with ALS for 55 years, doctors are not certain why he was able to live so long with the disease. A combination of genetic and environmental factors may be the reason. Hawking died at the age of 76. Gehrig died at the age of 37.

In the Western New York area there is a support group for patients and their families living with ALS called Hearts for ALS NY. Co-founder Dennis Wright of Rochester writes about the group: “An organization founded on the principal of helping the People Living with ALS, commonly known as Lou Gehrig’s disease, was the wish of our friend, Jeff Dunlap after he was diagnosed with this fatal neuromuscular disease in August 2005. After Jeff’s passing in 2009, the discussion and planning of how to make Jeff’s wish come true picked up momentum… In May 2012 Hearts for ALS NY, Inc. was born.”

“Jeff and I worked together at NYSDOT,” says Dennis, “and had known each other for 15 years when he was diagnosed. He was a ‘flannel shirt’ kind of engineer, supervising over 75 employees. He loved major snow storms and emergency situations. He was really one of the guys.”

Wright continued, “Jeff and I worked closely together to develop an employee safety and health program for the residency employees under his supervision.” Wright had been retired for two years when Jeff Dunlap was diagnosed with ALS. “From August 2005 until August 2009, when Jeff passed away,” Dennis Wright continued, “a group of his family and friends as well as work associates raised money through an annual golf tournament to help the family modify their home to make caring for Jeff easier.”

The organization, a recognized 501c-3 nonprofit, is totally volunteer with ninety-five cents of every dollar raised going directly to help the families and patients, known as pALS, in the western New York area. Over the past four years Hearts for ALS NY has provided almost $100,000 in support to the pALS in this area. Some of the services provided by Hearts for ALS NY were repairs to a wheelchair, shared cost of a powered stair lift, provided funds for additional caregiver hours, help paying for medications, financial support for bathroom remodeling into handicap accessibility, and electrician services to install a portable generator. Help is given when and where possible based on the client’s needs. The out-of-pocket cost of caring for someone with ALS is estimated to be $250,000.

“There are a number of your neighbors living with this horrible, very costly disease. In some cases families are barely getting by,” Dennis Wright writes. “Many people in our area are totally unaware of this fact. Currently Hearts for ALS NY is assisting thirteen families in the Greater Rochester, Southern Tier and Buffalo area.”

The cause of ALS is unknown. There are two types of ALS, sporadic and familial. The most common, sporadic, accounts for 90 to 95 percent of all cases. Familial ALS, which accounts for 5-10 percent of cases in the United States, means the disease is inherited. In those families there is a 50% chance each offspring will inherit the gene mutation and may develop the disease. The disease knows no obvious racial, ethnic or socioeconomic boundaries.

The focus of care, and the support goals of Hearts for ALS NY, are the same: to help patients enjoy quality of life for as long as possible. Currently there is no cure and men are somewhat more likely to develop the disease than women. The symptoms are progressive and eventually patients lose their ability to walk, talk, swallow, and breathe.

One unexpected consequence of military service is that military veterans are 60% more likely to contract ALS than the rest of the population. In an American Legion National Convention resolution (No. 311, August 29-31, 2006) it was stated “deployed Gulf War veterans are twice as likely as their non-deployed counterparts to develop ALS…”

In 2010 the federal government announced the full implementation of the National ALS Registry. People living with ALS may self-enroll in the Registry at www.cdc.gov/als. “The VA is working to identify and contact veterans with ALS, including those whose claims for ALS were previously denied, and Hearts for ALS NY is working in communities to educate and make sure veterans living with this terminal disease are aware of the benefits that the VA and American Legion fought for in Washington.” (Dennis Wright) For more information about Hearts for ALS NY, email info@heartsforalsny.org.

Robyn Near is a Ripley resident.


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