When you have a few minutes, I would love for you to watch this video and learn more about the CHARGE Syndrome and the Foundation.
Since this is such a rare genetic disorder, our group relies on the leadership, information, research, support and resources provided by this amazing foundation. They have helped our families tremendously! Often times, it is someone affiliated with the foundation that helps diagnose a child, versus the local doctor or geneticist. They definitely are the leading resource. I still remember the first desperate call I made to the foundation office...and wanted ALL the possible information and research on CHARGE Syndrome ASAP. (Then I cried for days/weeks/months when I started reading it. But it was a reality I needed to face, and their help has been invaluable.)
And of course, they could use all the financial support possible to continue their wonderful programs and informative conventions. They have a mighty BIG job on their hands.
Thank you!
3 comments:
yeah the foundationn r the best my mum was the start of the aus one yay mummy right she basicly learnt with the foundation when i was a baby and we r allways still learning
Thanks for sharing that. Its a very helpful video. They did a great job in making it. I am so glad that you have them on your side.
Thanks so much for sharing the video.
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