Adam D. Ames of Titusville
I am 14 years old. Nearly nine years ago, my mother, Tina Singer Ames, was diagnosed with Amyotrophic Lateral Sclerosis, better known as ALS or Lou Gehrig’s disease. ALS is a terminal disease that typically affects both men and women between the ages of 40 and 70. Anyone can get ALS.
ALS is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells responsible for controlling voluntary muscles and slowly kills them off. In my terms, this means that ALS targets and kills all nerve cells, leaving patients paralyzed and finally unable to breath — resulting in death.
Less than a year after her diagnosis, my mother died along with her nerve cells. I was 7 years old. Today, there is still no known cure for ALS, nor is there a known cause — that’s why you have received this letter.
On Sept. 9 from 2-6 p.m., there will be a benefit at the Historic Hopewell Railroad Station in memory of my mother, to raise awareness and money for the research of this uncommon, yet deadly disease. All proceeds will be donated to the ALS Hope Foundation ™ located in Philadelphia, Pa. They research ALS, constantly striving to find a cure, as well as providing care and support to patients and their families.
As it was, my mother saw no way to explain to my sister Nora and me, what was happening to her. In order to do just that, she wrote a book, “What Did You Learn Today?” It is a children’s book that teaches exactly what ALS is and how to cope with the loss of a loved one. Copies of the book will be on sale for $10 at the benefit. There also will be a raffle where all ticket proceeds will be donated to the ALS Hope Foundation™. The cost to attend is $25 per person and light refreshments will be provided. If you would like to participate, contact Jodi O’Donnell-Ames at [email protected] for information and tickets. She is my stepmother and her husband died from ALS in 2001 at the age of 37. We have a new family through this loss.
My stepmother Jodi volunteers on the Board of Directors for the Greater ALS Hope Foundation, and is organizing the event along with the help of my dad, sister Nora, stepsister Alina and me.
Interested contributors unable to attend may send a check to: ALS Hope Foundation, Attn: Hope Well for ALS, P.O. Box 40777, Philadelphia, Pa., 19107