Informational Links about GM1 Gangliosidosis (Type II)
NIH site on Gangliosidosis
Armand’s Clinical Trial
Hide and Seek Foundation Information on Lysosomal Storage Disorders
Foundations and Charities
Ronald McDonald House
Children’s Angel Flight
Hide And Seek Foundation
May I ask how things are going with Armand? I am helping a family in Georgia organize a Charity event to benefit their Grandchild who is 16 months old and has been diagnosed with GM1. The prognosis is not a good one as advised by her physicians but I can’t help but wonder if all is being done, no stone left unturned for this sweet little girl.
Can you help me in guiding me along in my efforts. I am certain that their are companies out there that can furnish this child with the equipment she needs to live a life of comfort, this family is in dire need of financial help. Any guidance as to how to proceed would be much appreciated as I can tell you have walked a journey yourself and I hope Armand is thriving!
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