From the desk of Denise

rachelskunk

This was written by a dear friend, Denise about Rachel’s Mom. ┬áThank you Denise for sharing this with us and giving permission to share it with the world!

Last year Kat and myself, a scientist, had three amazing opportunities thanks to the funds raised last October by TeamRachel. It started out so simple. Two Moms meeting at the first day of preschool dropping our sons off at Seaside Montessori. We had never met though Kat was someone I knew was like nobody I had never met.

Upfront and to the point with the ability to make me blush but always in this amazing fun loving way we took a walk on a cold September day and she told me about Rachel and Battens Disease and life would never be the same.

A month later an amazing TeamRachel Race occurred and a month after that we were meeting at my house with an expert in the field of gene therapy over pizza and beer and a whiteboard. A month after that, grabbing a bagel and coffee from Weinberrgers we set off to Mass General in Boston to meet with scientists who study the Juvenile form of Batten Disease to learn of their latest research. Two months later we met with a top neuroscientist from Genzyme and also an expert on gene therapy in the brain, who discussed with us his experience with a clinical trial for the Infantile Batten Disease and our mouths dropped open as he explained how he saw areas of improvements to gene therapy for Infantile Batten Disease and discussed how it is his wish to piggyback this knowledge with a Juvenile Batten Disease clinical trial.

And all the while I watched this brilliant man who reminded us of a nice Einstein humbled by Kat, Mom of Rachel. Her knowledge, her questions, her ability to make everything feel real. Her presence cannot be ignored nor can her ability to bridge the people who can change the world with the families who need them. I knew when we left that day, this brilliant scientist who reminded us of a nice Einstein would be thinking a lot of Rachel and Kat

Months later the scientists from Mass General and the scientist from Genzyme came together for the first time (academic experts in Juvenile Batten Disease with industry gene therapy experts) meeting to discuss a potential collaboration for Juvenile Batten Disease. This is where we are now. Know this race makes a difference. Know it takes ordinary people to start doing the extraordinary.

1 thought on “From the desk of Denise”

  1. We have come a long way & must work harder to raise the $25,000 to beat last years efforts.We have a great team but the economic downturn is proving hard to overcome. How can I SHARE this E mail from Denise? Mum/Granny XX

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