June 2006

Claire Gormley Collier, my wife, and Mother of our three young children, is entering her fourth year of fighting ALS (Amyotrophic Lateral Sclerosis, commonly known as Lou Gehrig’s disease).  Doctors told us ALS would weaken every muscle in Claire’s body, leading to paralysis and eventually death.  We were also told the medical costs would be extraordinary, but we had NO IDEA!

One day, Claire began experiencing “twitches” and cramping in her arms and legs and feet.  After visiting several doctors, Claire 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.  Finally we received the diagnosis – Amyotrophic Lateral Sclerosis, ALS .  One can only imagine our horror and disbelief!  All Claire thought about was her future, with our three children and myself.  How could this be?  Claire’s 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 2004, Claire applied for social security disability benefits.  Although Claire and her employers paid social security and Medicare taxes for over fifteen years, Claire was denied coverage.  Why?  According to their policy, she 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”, Claire said.

Claire is not eligible for the necessary insurance coverage, and current round-the-clock nurse care expenses are roughly $10,000 per week.  Claire’s muscles are rapidly weakening, her movement is limited, and she can only be transported with the assistance of strong (and wonderfully kind) nurses.  Breathing requires a ventilator – the result of a tracheotomy last February.

As Claire’s husband, I must do everything I can to help Claire live with the dignity and grace she deserves.  At this point, we must rely on the generosity of those who have the compassion and means to support Claire and her care. 

The Friends of Claire Foundation, Inc., a Connecticut not for profit 501c3 Corporation, is seeking ANGEL donations to offset Claire’s nursing care.  We accept donations, grants, corporate donations, and stock transfers to continue one or multiple weeks of Claire’s nursing care.

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.

Gratefully,
Bill Collier

The Friends of Claire mission is to support the fight against ALS by raising awareness, funding research and changing policy.

Friends of Claire Foundation, Inc.
P.O. 7669
Greenwich, CT 06836
A Connecticut Non-Profit Corporation