ALS stands for amyotrophic lateral sclerosis. It's commonly referred to as Lou Gehrig's disease named after the legendary Yankee first baseman. ALS is a fatal neurodegenerative disease that affects nerve cells in the brain and the spinal cord. People with ALS eventually lose the ability to move, speak, swallow and breathe. The number of cases in men is slightly more than in women. There are about 5,000 people diagnosed with ALS every year.
What kinds of services does the chapter offer?
We're happy to be celebrating our 15th anniversary as a Chapter. Our chapter serves about 600 people living with ALS in the Greater New York area and we provide support services that help maintain a quality of life. We have three Centers which are sort of a one-stop shop where patients can be seen by multidisciplinary team. We have support groups, equipment loan programs, we do home visits, and other support services for patients and families. We have a website that has a lot of information about ALS and our programs and activities. We're also on all the social networking sites out there like Facebook and Twitter.
Tell us about the upcoming "Walk to Defeat ALS" in Westchester.
We hold five walks in the NY and NJ area throughout the Spring. Next Sunday on the 14th, we have our Westchester walk in Tibbets Brook Park in Yonkers and Bill here is our Chairperson. It's a great chance for people affected by this disease to come together to raise funds and awareness for the cause. Bill here helped us establish the Westchester Walk 6 years ago and he's still serving as a chair of the event. We expect about 1000 people to come out and walk with us. We invite you to join us and you can register by going to our website at www.als-ny.org.
Bill, why did you get involved with the Walk in the first place?
This is our seventh Walk and my ninth year as an active Advocate. Why am I involved in many advocacy efforts - we have four grandchildren - they might become be victims of this always fatal disease and I want to be able to assist in finding the cause(s) and cure.
What is the most important thing for families of ALS patients to know?
There are dedicated medical professionals who work tirelessly with little compensation other than the reward of knowing they will find a cure. And other selfless medical and non-medical people who work every day to provide assistance and comfort to victims and their families. That organizations like the ALS Association are working to put themselves out of business.
For more on this, visit www.als-ny.org.
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