It has now evolved into a very successful business. I am the president.
Along the way, I met the most wonderful mentor. She has blown away glass ceilings for countless women of all ages internationally. Among the most valuable lessons I learned from her is that you must maintain balance.
It was with a broken heart that I learned my mentor was diagnosed with Amytrophic Lateral Sclerosis, also known as ALS and Lou Gehrig’s Disease.
At any given time, 30,000 people in the US are afflicted with this painless, non-contagious, and cruel disease. Without a national registry, ALS is difficult to diagnose. The neurons lose their ability to communicate with the muscles, which causes paralysis.
The entire body of muscles slowly loses control; the mind, however, remains sharp. So the person gets to watch him or herself slowly lose all bodily functions and watch their loved ones deal with their reality.
Feeling helpless for my dear friend, I decided to volunteer for “Extra Hands,” a wonderful organization that matches high school and college students to homes with families afflicted with ALS. They also strive to create a national registry so that this disease will be easier to diagnose, and offer education to the general public.
There is research being done and progress being made. A pharmaceutical company has developed a drug (that is in clinical testing) to provide a boost to the body energy pathways. The drug delivers excess energy to the neurons so that they can compensate for the plaque build-up caused by the deterioration that is ALS. Ultimately, it is hoped that this will slow the progression of the disease.
Dr. Allitia DiBernardo of Massachusetts General Hospital in Boston is credited with researching this amazing breakthrough.
So, what can one person do to help?
- Become involved with Extra Hands, (Contact: val@extrahands.org),
- Write to your representatives in the US Congress and Senate to let them know that it is time to mandate a national registry so that baseline information about ALS diagnosis can be monitored and shared,
- Be an ambassador. Be aware of what you can personally and publicly do to make people knowledgeable about this devastating disease.
Network and get involved! That is our edge. If you have any questions, please feel free to e-mail me directly at Karen@fredericduclos.com.
