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November 11, 2021

We just held our Virtual Reverse Rett NYC 2021 event. I’m so grateful to every supporter and to every family that reached out to their networks to raise funds. All of you have my deepest gratitude for helping us generate the financial resources that are so critical to advancing the research towards a cure.

As I was watching all the donations coming in, I noticed a whole lot that were for $44. At first I thought that was a bit odd since usually people make donations of round numbers. Then I remembered that Thomas Oelkers, a father to three beautiful young daughters, one of them, Camryn, who has Rett syndrome, was a firefighter for the FDNY with Ladder 44. Tom passed away last spring from cancer caused by his service as a firefighter at the World Trade Center after September 11. He was a firefighter for 19 years and before that served with the NYC Police Department.

To say I was moved by this support of RSRT in honor of Tom would be an enormous understatement. This remarkable man, who put his life at risk to serve his community, was loved and admired by so many. Tom’s devotion as a father and husband were palpable. He and his wife, Erika, served as co-chairs of Reverse Rett NYC, and every year I looked forward to seeing Tom’s smiling face at the event. His optimism in the research was infectious, and his pride in Camryn was so powerful. I miss Tom, and I can only imagine how Erika and his family and friends feel.

I wanted to share this with the Rett community, to honor and pay tribute to Tom and his family. Thank you for your service, Tom. Thank you for your legacy.