Friends of Claire
Part of the MAC Foundation, Inc. A Connecticut not for profit corporation.

My name is Claire Gormley Collier, and this is my family. My husband Bill and I are pictured with our three beautiful children, Kieran (9), Bridget (8), and Leah (7).

One year ago, I was running nearly twelve miles a week, working out frequently, drawing freehand, mounting student artwork at school, and attending class trips. Today, I can hardly climb a flight of stairs. I have trouble opening and pouring a gallon of milk, making school lunches, and writing notes. I can no longer attend field trips with the children, as I cannot walk long distances. It is difficult to fold laundry, and one can imagine how much there is to do with three active children (and a husband). This all became too real when my son said, "Mom, it makes me sad that you can’t climb the stairs and tuck us in every night."

The Collier Family

photo by David McClenny

In May 2003, I began experiencing "twitches" in my arms and legs, and cramps in my feet and legs. After visiting several doctors, I was referred to a neurological specialist at Mount Sinai Medical Center in New York City. Over the next few months, there were many tests and procedures – MRI’s, CT scans, PET Scans, spinal tap, and a muscle/nerve biopsy. In October 2003, I received the diagnosis – Amyotrophic Lateral Sclerosis, ALS, commonly known as Lou Gehrig’s disease. One can only imagine my horror and disbelief! All I could think about was my husband and three children. How could this be?? My doctor prescribed a "cocktail" of daily vitamins and several medications; only one of which is FDA approved for ALS. Immediately, we began researching ALS. We found the following:

• About 13 people in the United States are diagnosed with ALS everyday. Roughly the same number of ALS patients die each day.
• The average life expectancy of ALS patients is two to five years.
• Federal Funding for research to find a cause and cure for ALS is woefully inadequate.
• The financial cost to ALS families is exceedingly high. Costs include prescription drugs, occupational therapy, physical therapy, expensive equipment, home care assistance, and home modification.
• Presently, there is no cure for ALS.

In January 2004, I applied for social security disability benefits. Although my employers and I paid social security and Medicare taxes for over fifteen years, I was denied coverage. Why? According to their policy, I did not earn enough work credits within the past five years. I feel penalized by the "system" for choosing to stay home and raise our family.

I have been fighting the rapid progression of ALS with a sense of calm, and a sense of humor. Bill and I have found a new level of love. We strive to enjoy each day, and live our life to the fullest. We wish this fantastic foundation, its supporters, and all those affected by ALS find support and strength in each other. We all pray for a cure.

We are truly thankful for the kind words, thoughtfulness, prayers, friendship, love and support we receive. We feel so blessed for what we have – each other, our family, and our friends.

Yours in love,
Claire and Bill Collier