2015 Yearend Summary: A Letter from Beat Nb Co-Founder, Patrick Lacey

Dear Beat NB Supporters –

Thanks to your extraordinary support over the past calendar year, we were able to send $800,000 to fund research and clinical trials in 2015.

Whether you donated, hosted a fundraising event, sponsored an event, attended “Cure Me I’m Irish,” or ran in the Falmouth Road Race, you contributed to Beat NB’s accomplishments in 2015. Below is a list of updates to summarize the work done this year in the clinical trials consortium (NMTRC), which is just one aspect of the efforts funded by our organization, in addition to all of the ongoing trials that were opened before January 1st, thanks to prior funding.

1. Preventing high-risk NB children from relapsing. This is an area where we feel we can have the most dramatic impact on survival in the short-term. We hope to have phase II clinical trial results published early in the New Year, and the results are very promising.

2. The first ever clinical trial using genomic medicine – along with standard chemotherapy – for newly diagnosed children with high-risk neuroblastoma. This trial was funded by DELL, and is also using DFMO to hopefully prevent any children from relapsing. This is part of the longer-term strategy to, not only increase survival, but to work on decreasing the toxicity of the current standard of care.

3. A new trial was opened for NB kids, combining tolcapone and oxaliplatin for those kids battling relapsed or refractory disease.

4. Six new agents were tested in the lab, with the two most promising agents looking to move into phase I clinical trials in 2016.

5. The consortium has added 8 new sites – thus bringing the treatment closer to more children across the United States.

In addition to my duties with Beat NB, I am honored to continue to serve on the Executive Committee for the consortium, which is funded by your support. In addition to this committee, earlier in 2015 I was also appointed to the role of Executive Advisor to the NMTRC chair. Both roles allow me a unique look into exactly how our funds are being used, and that transparency only further fuels my desire to lead Beat NB to do more.

This work is where the tide will be turned – and your support is making it all possible.

Thank you for all you have made happen and it is with great enthusiasm that I look ahead to making 2016 a year to remember.


Patrick Lacey

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