Alternating Hemiplegia of Childhood Foundation
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Friends,
Each year at this time I write asking for everyone's financial support for the research being conducted into finding a cure for Alternating Hemiplegia of Childhood (AHC). Here is 1997's update of my son's progress as well as the Foundation's ongoing activities.
My son Greg is now 6 and a half years old and continues to suffer from periods of paralysis and pain that last for minutes, hours or even days. His episodes of paralysis are most closely compared to a person who has suffered a stroke. If you have ever been exposed to someone who has had a stroke, you know how difficult the recovery can be. Imagine my son's difficulty in recovering from one daily or weekly.
In the past year we really haven't had any new sources of treatment, but the medication he has been taking has continued to lessen the severity (but not eliminate) of his attacks. He has continued making progress towards his independent living skills such as self-feeding and personal grooming, however, his progress in gross motor skills (for example, walking) has been minimal. We lived through a particularly terrible period over the holiday season in which Greg couldn't move any part of his body for over a week and was weakened for months afterwards. He has finally gotten his strength back, however, we are always worried about another major setback like that one.
Many of you will have noticed the new Pennsylvania address. In the beginning of 1997 we moved from Connecticut to the State College, PA area. The change has been especially beneficial for Greg because his school environment has been dramatically improved. They are experimenting with numerous assistive communication devices and he really seems to be picking up many new skills. His communication ability is severely limited, however, the teachers feel confident that he is progressing well in learning his numbers, letters, colors and other important skills.
Now for the organizational news. The Foundation continues to be run by parents of children who are afflicted with this disease. We are still an all volunteer army. There are no salaries paid and many of us pay for expenses out of our own pockets so that the money we receive can be used for research.
A very significant event for our group occurred in May of 1997. An international symposium was conducted in Seattle to discuss AHC and possible cures and treatments. Over 20 research doctors from around the world came together to discuss what they know and most importantly, where to go from here. These doctors identified many areas that need further research from the testing of blood to spinal fluids to drugs to genetics. In the immediate future they are compiling a patient information database and also collecting blood samples from patients and their families for testing. They will be setting up three to five further research projects in the next 12 months.
The estimate of the cost to start and continue these important research projects is about $1 million over the next five years.
Don't let this amount intimidate you and please don't think that you can't help us reach this goal. It is possible and we will make it!!
The only way for us to achieve it is to ask for continued financial support from everyone. Every check for $20, $50 or more puts us closer to success. No amount is too small to help. Pass this note on to relatives, friends or co-workers and don't forget to direct United Way contributions to us because they are very important.
We can't do this without your help. Thank you for your kindness.
If you have any questions or need more information please don't hesitate to contact me at work at (814) 234-4460.
My sincerest thanks,
Your name
Please make checks payable to: AHCF or Alternating Hemiplegia of Childhood Foundation, c/o Your address
You can also specify that your United Way contributions be directed to the Foundation. In Pennsylvania the organization ID is 9157. The United Fund of Tristate (NY, NJ, CT) uses ID #018457.
All contributions are tax deductible - Tax ID number 38-3225425 Contributions of $250 or more will receive a receipt automatically. All other amounts, please request a receipt if desired.