DeLine's UC Mind Institute Study
Donazione protetta
We are the DeLine family - Chris, Rachel, and those two adorable boys in the picture are Derek and Parker. They were born with Fragile X Syndrome, which is the leading genetic cause of Autism, and I am a premutation carrier. If you have a few moments, please check out this wonderful video that Katie Couric recently shared with Yahoo about Fragile X Syndrome.
https://fragilex.org/2015/in-the-news/katie-couric-to-feature-fragile-x-on-yahoo-news/
Dr. Randi Hagerman is a pioneer in the Fragile X world and is the co-founder of the National Fragile X Foundation. She reached out to me personally (AHH!) and invited me and the boys to participate in research studies that she is conducting at the UC Mind Institute. She's asked us to be part of a ongoing study that requires two trips out to the UC Mind Institute. These studies help further research that provides answers and hope for families with Fragile X. It also provides assessments and help for parents and carriers. While there are grants available, funds are limited and do not cover all of the costs. Since going on a cross country trip with both boys to a brand new place would be impossible for me alone, Chris will need to come as well. Especially since I will need to go participate in my study while he helps the researchers with the boys for theirs at times. His flight, our costs that exceed what the grant allows, and other miscellaneous costs are out of pocket.
This is where we need help. I've never been one to reach out and ask for money for myself, but this wouldn't be for me. My hope for the this trip is that it provides us hope, guidance and direction through this Fragile X world. Our boys are sweet, funny, caring, compassionate and the reason that we get out of our warm bed every morning. We want to provide them every opportunity that we can. Anything that you can spare is so greatly appreciated.
Love,
The DeLine Family
https://fragilex.org/2015/in-the-news/katie-couric-to-feature-fragile-x-on-yahoo-news/
Dr. Randi Hagerman is a pioneer in the Fragile X world and is the co-founder of the National Fragile X Foundation. She reached out to me personally (AHH!) and invited me and the boys to participate in research studies that she is conducting at the UC Mind Institute. She's asked us to be part of a ongoing study that requires two trips out to the UC Mind Institute. These studies help further research that provides answers and hope for families with Fragile X. It also provides assessments and help for parents and carriers. While there are grants available, funds are limited and do not cover all of the costs. Since going on a cross country trip with both boys to a brand new place would be impossible for me alone, Chris will need to come as well. Especially since I will need to go participate in my study while he helps the researchers with the boys for theirs at times. His flight, our costs that exceed what the grant allows, and other miscellaneous costs are out of pocket.
This is where we need help. I've never been one to reach out and ask for money for myself, but this wouldn't be for me. My hope for the this trip is that it provides us hope, guidance and direction through this Fragile X world. Our boys are sweet, funny, caring, compassionate and the reason that we get out of our warm bed every morning. We want to provide them every opportunity that we can. Anything that you can spare is so greatly appreciated.
Love,
The DeLine Family
Organizzatore
Rachel DeLine
Organizzatore
Acworth, GA
