Resolution signed declaring June 9th Batten Disease Awareness Day in NY

ALBANY, N.Y. – A resolution has been signed to declare June 9th as Batten Disease Awareness Day in the state of New York. 

This Resolution was made possible thanks to the Metro NY/NJ Chapter of BDSRA, Fred Surrey, and New York State Senator Andrew Lanza. Senator Lanza sponsored the resolution, which was adopted by the New York State Senate on May 23rd and signed by Secretary of the Senate Alejandra N. Paulino. 

CLICK HERE TO READ THE RESOLUTION

Fred and his wife, Janet, are Staten Island residents and bereaved Batten parents to Michele and Lauren. Both Michele and Lauren had CLN3 Batten disease and passed away in 2018 and 2020, respectively. Fred currently serves as the Treasurer for the BDSRA Foundation Board of Directors.

The Surrey Family

BDSRA expresses its gratitude and appreciation to the Surrey family and Senator Lanza for their efforts in this resolution that’ll help raise more awareness for Batten disease in the lead-up to International Batten Disease Awareness Day on June 9th. 

For more information on how you can draft and submit a proclamation and resolution to your local and state governments, please click here. 

To get to know the Surrey family and their Batten journey, click here to read this spotlight on Fred. Janet also volunteers at the conference and has gathered a group to help her make the centerpieces for this year’s Annual Family Conference in Denton, Texas. She currently has the top individual fundraising page for the BDSRA Virtual 5K/International Batten Disease Awareness Day.