BENEFITING: National Fragile X Foundation
EVENT DATE: Oct 11, 2014
Josh Grantman wrote -
"Part of the problem with the word 'disabilities' is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can't feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren't able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.” ― Fred Rogers, The World According to Mister Rogers: Important Things to Remember
It is difficult to put into words what your support has meant to my family and so many other families challenged by Fragile X. For many years we were alone on a VERY daunting journey with very little support and information on how to manage it all. But, now we have a large community of support, educational opportunities, and best of all -- HOPE…. in large part because of YOU! If you have given in honor of Team Joshman in the past, THANK YOU! If you are considering it this year, PLEASE do. It is more valuable than you could possibly imagine, and it is tax deductible!
Thanks to the Kansas Fragile X Group being a sponsor, and to my amazing husband’s support (and credit card), I was able to attend the 14th International Fragile X Conference this summer, where I went to as many sessions as possible to absorb as much information as I could on an overwhelming number of topics. Some were focused on the hopeful research that’s happening and linking Fragile X with Autism and Alzheimer’s, Parkinson’s and other disorders – it appears that this gene I carry has very important implications, more so than we originally knew. Other sessions were all about helping Josh continue to have a rich and fulfilling quality of life during his adult years. And some were about me…..taking care of me because of the health issues that are prevalent in carriers of the Fragile X gene. I was also able to spend time with hundreds of other Moms (and some Dads) learning as we go – amazing experience! Your support helped make the conference a possibility!
Josh and I participated in Fragile X research this summer at the University of South Carolina – Josh for a language, cognition and behavioral study; and me for a carrier study. It is a blessing to participate in any kind of research – to do our part to hopefully help with a brighter future for others. The studies are partially funded by the NIH – research funding that myself and/or others travel to Washington, D.C. every Spring to encourage Congress to continue supporting. The dollars are shrinking, the need is rising. Your support helps make a difference.
I have been in the basement sewing for fundraisers – auctions and raffles – every spare moment and piece of fabric I can find! To those of you who have bid on the items I’ve made, thank you! To my friends who have graciously donated items to our auctions, thank you! Your support helps make a difference.
Josh will finish in May with the 18-21 program in our school district. I’m not sure what the future holds for him after May, but I’m working on it. As we move into yet another pivotal transition in Josh’s life, I am hopeful our friends and family will be supportive yet again.
Please join us at Shawnee Mission Park, Shelter No. 2, on Saturday, October 11, 2014, and walk with Team Joshman at the 4th Annual Walk for the Faces of Fragile X! You may register and choose to be on our team by clicking on the "Register" tab on this page. If you are willing and able to help us reach our fundraising goal this year, please click on the "Donate" tab. Your gifts are a blessing and tax deductible!