Helping Hand Grant Fund
How Your Invaluable Support Helps!
The Helping Hand Grant Program provides scholarships to families-in-need to help with the expense of attending the Annual Family Conference. NTSAD does not take any administrative costs; every dollar raised goes directly to a family in need because supporting families is a top priority. Only at the NTSAD Annual Family Conference can families connect directly with other families, learn the latest in research developments and discuss health management options.
We need to raise at least $20,000 more to be able to help every family who wants to attend the conference but cannot afford the expenses. Your gift today will make a difference in the lives of families coping with the unimaginable.
My daughter was born perfectly perfect with 10 fingers and 10 toes with perfect lips and eyes and hands and feet. She completed our family instantly. She was learning just like any other baby and reaching her milestones until the age of 5 1/2 months and that is when things started to change. She was no longer able to sit up and stopped rolling over....I knew there was something wrong. She started to regress and things got worse. She never crawled or took a step, never had a first word and has since lost her vision and ability to eat orally. My daughter was diagnosed with Tay-Sachs disease on July 23rd, 2012. I thought our world and the life we knew was crashing down. I didn't know what to do or where to turn. I immediately started to do research and came across NTSAD. This has been my saving grace.
Coping with Loss
We desperately want to attend the Annual Family Conference. With all of the funeral expense and saving money for the headstone we could really use all the help we can get to attend. We need help with travel and hotel. I was looking into our finances to see what we could budget for the conference. Realistically I know that the trip will not be possible for us on our income. With passing of our daughter and the birth of our son, and the resulting missed work and funeral expenses, our savings are drained. Even our tax return will not even be enough to cover a proper head stone for our daughter.
Living with Late Onset Tay-Sachs (LOTS)
My son has Late Onset Tay-Sachs and is not doing well at all. He has been ill and is simply fading away. For people who have not seen him in some time, it is shocking. We are trying to deal with it as best we can, but it is very difficult. The Annual Family Conference gives us the strength and resources to face the difficult year ahead.
Providing Advanced Care
We attended our first NTSAD Annual Family Conference just 2 weeks after our daughterâ€™s diagnosis. The disease has really taken a toll our sweet daughter's body. The conference is a chance for us to spend a weekend with other families like ours. It is a weekend of learning, laughing, crying, and just feeling normal.
Living with Canavan
We have never attended a conference and would love to meet other families for support and friendship. We hope to get some valuable information from the researchers, clinical experts and other families. We plan to use our tax return for travel but will not have enough to cover the other expenses. We think attending the conference would be a very valuable experience for our family and hope that we can receive a grant to be able to attend.