Yesterday I was challenged to the ALS Ice Bucket Challenge by my great friend, Jake Requard.
I opted to not douse myself, but rather to take a few moments to share a bit about Amyotrophic lateral sclerosis, or ALS. In January, I read about a local man named Chris Rosati battling ALS who wanted to hijack a Krispy Kreme truck so he could drive around and pass out free donuts like Robin Hood. Just to make people smile. When I mentioned it to my husband, Matt, it turns out that he grew up with and was great friends with Chris.
It broke his heart to hear about his childhood friend who has become one of the 30,000 Americans battling this terminal disease. Chris, like many others, lives with a progressive neurodegenerative disease that affects the nerve cells in his brain and spinal cord—knowing that there is no cure for the progressive degeneration of the motor neurons that will eventually will lead to death.
And thanks to Jake, I have done my research and accept the challenge to broaden my knowledge of a disease that strikes two per 100,000 people.
- ALS strikes (most commonly) people between the ages of 40 – 70.
- As many as 30,000 Americans have the disease at any given time.
- Early symptoms of ALS often include increasing muscle weakness, especially in the arms, legs, speech, swallowing or breathing.
- No two people will have the same journey or experiences.
- There is no cure or treatment today for ALS.
- ALS is not contagious.
- Approximately 5,600 people in the US are diagnosed with ALS each year.
- Life expectancy for individuals living with ALS ranges from two to five years, though more than half of all patients live more than three years after diagnosis.
- ALS can strike anyone.
Support services for these individuals and their families pales in comparison to the millions of dollars I helped raise as the grantwriter for the Alliance of AIDS Services – Carolina, and the even more millions of dollars raised annually by the Susan B. Komen foundation for breast cancer. All of these organizations, and all of the people they support, and all of the overwhelming need accumulated, are worthy and in need of financial support. I’m happy for the ALS Foundation, and that the 30,000 Americans living with ALS are in the minds of so many right now … hopefully, the organization will reach a sustainable level of donations so that it may continue to focus on treatment and quality of life.
When I was a child, I had a friend who’s father was a US Marshall … who grew up and was best friends with Jim “Catfish” Hunter. At the time, I just remember how nice he was, and that he always had boy stuff to share with the kids when he was in town visiting his friend—baseballs, mits, stuff like that.
So I raise this glass of ice-cold water in salute to my husband’s friend Chris Rosati and my friend Catfish Hunter, and the 30,000 Americans battling ALS. My family will be making a donation to the ALS Jim “Catfish” Hunter Chapter in Chris’ name. I urge you to enrich yourselves by learning more about the ice bucket challenge that’s sweeping the nation and the disease it is supporting, and find it in your heart to donate your time and money, when you can, to organizations like the ALS Foundation, that so need the continued support of the community.
For more information on ALS:
- ALS Association
- Help and Resources for People with ALS, Families and Caregivers
- My local ALS Jim “Catfish” Hunter Chapter
For more information on Chris Rosati and his good community works:
- Fathers Day brings joy, tears for Durham dad with ALS
- The great Krispy Kreme donut heist
The non-profit world can be a bit insular—60-70 hour work weeks tend to be a little time consuming when fighting the good fight. So I challenge three of my friends and former non-profit colleagues to expand their knowledge of a disease outside of their daily realm of community effort. The work they do is so very important … but there’s always mental bandwidth to learn about the struggles in other populations in the community. Whether you douse yourself in ice cold water or make a donation is up to you; what’s important is that you take the time to learn about ALS, and share the knowledge you have gained.
- Randy Light and his alter ego, Mary K Mart, Director of Development at Alliance of AIDS Services – NC
- Jan Muller, Program Operations Administrative Assistant, East Coast Migrant Head Start Program
- Melissa Cartwright, Director of Development at Equality NC