Constance Joan Schneider Conte ALS Group, Inc.

When we returned her condition worsened, the pain was unbearable, she could not sleep, she cried a lot and part of this was attributed to the disease.  She was unable to sleep in our king-size bed, so I had a hospital bed placed at the foot of my bed and she laid perpendicular to me so I could watch over her at night.  Most of the time she was unable to sleep, wanted to get up and go into the family room to sit in a motorized wall chair that I bought for her.  When I could get her into the chair, I slept in a chair next to her.  This situation did not last long.  I reached a point where I could no longer pick her up to make the move from the bed to the chair and back. Each night she cried from discomfort throughout the night.  I mentioned in my book, that details her trials with ALS, I lost my patience on many occasions.   Thinking of this even after almost four years after her death, tears me apart.  She was a wonderful Mother and Wife and as most of us that were left behind say, "She did not deserve to die this way."  The pain got worse and thanks to Hospice she was able to gain short periods of relief with Morphine injections.  Three days before she died she went to the Hospital in Hagerstown, Md.   I believe she overdosed on Morphine.  On the morning when she died, I held her hand, rubbed her face softly and as her pulse vacillated between 30 and 20, I told her to let go, hoping she could hear me.  I told her that she was going to a better place and I kissed her goodbye.  The wrinkles of pain and the tears on her face had disappeared, and looking at her, I knew she was in God's hands, and at last she was at peace.

This foundation needs your support to pay for ALS research, so people like Connie do not have to die such horrible deaths.  I wrote my first book on Connie’s bout with ALS and three other books on various subjects in an effort to raise funds to keep Connie’s foundation viable.  I asked my relatives and friends to support us financially, which many have done.  I have also asked them to tell their friends about the books that are used to support the foundation and can be used as a tax deduction.  In the past we have done a number of things to help people.  Our new objective however, has changed.  We are going to provide most of the contributions or book sales about 85%, to fund ALS research.  We will keep 15% to continue to help caregivers who desperately need relief from their caregiving duties.  Our ALS foundation will work with your community to help you identify and to pay for a person to relieve a caregiver for one to two hours a week from their arduous task, and attempt to locate a doctor who may consider a home visit.

Our foundation is small and the number of people with ALS is not huge like the number of people with Cancer or Aids.  I am attempting to collaborate with another ALS foundation that is connected with the Hospital mentioned under headline news.  They appear to be getting promising results from their ALS research. Our collaboration with this other foundation would permit us to assist in financing research for a cure for ALS.  Each year over 100,000 people contract ALS. When they find out that they have this devastating disease, the decision is accompanied by an automatic death sentence.  Although an ALS patient experiences excruciating pain, and extreme suffering, their mental faculties remain in tact.  This happens because their brain is not affected by the disease, they experience severe anxiety that gets worse everyday of their life, and then they die a horrible death.    Did you realize that over 150,000 of those women and men that were in our armed forces currently are ALS patients?  While ALS patients may survive for five or more years, the majority die within three to five years.

We realize that many of you donate to cancer foundations and other foundations that are widely advertised.  We will not spend your contributions advertising or on salaries.  Expenses to publish the books we sell are paid for with the funds from the Board members personal bank accounts.   

The time has come for Connie’s foundation to cry out for contributions.  Most of you have lists of email friends that you exchange religious and comical emails with ten times daily.  You can help Connie’s foundation to support research for ALS by telling them about this site and telling them about the books we sell to raise research money.  I know times are difficult, and that finances have been diminished by the downslide of the economy, but the large foundations have millions in their coffers.  Shave a few dollars from your donations to them and help a cause that have only a few donors and is much less known by the public.  Keep in mind that ALS is not confined to anyone group of people, young or old.  Help is needed now and your donation may result in your love one’s never knowing, that this disease ever existed.

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