Hi Everyone,

Fred and I will be participating again in the International Batten Disease Awareness Day 5K Run (IBAD) on Sunday, June 9th, 2024.  We

will be walking in Bloomingdale Park in memory of our daughters Michele and Lauren Surrey.  We will meet by Edgegrove Avenue at 2PM.

We will be walking not running!!  Hope you can join us. Refreshments to follow at the Surrey's.  Thank you all for all your continuous support!!  If you cannot participate supporting the cause would be so......appreciated!!! 

  LOVE, HOPE, CURE !!

Janet Surrey

Parent Advocate for a Cure 

& Member of the BDSRA Conference Committee 

To all our friends and family,

As some of you know, June 9th is International Batten Disease Awareness Day.

And since June 8th would have been Lauren's 30th Birthday I once again contacted our

NY State senator and asked that he remember Lauren by presenting a resolution to the

NY Senate.  To that goal see below:

State of New York

Legislative Resolution Senate No. 2107

Whereas, The BDSRA (Batten Disease Support Research & Advocacy) Foundation is

observing June 9, 2024 as International Batten Disease Awareness Day to educate the

public globally about this ultra rare genetic disorder; and

Whereas, The BDSRA leads the collective effort, along with many Batten family

foundations to promote and financially sponsor world-class medical research aimed at

finding effective treatments, with the ultimate goal of finding as cure; and

Whereas, It is imperative that there be a greater awareness of this serious health

condition, and more be done to increase activity at the local, State and national levels;

now, therefore, be it

Resolved, That this Legislative Body pause in its deliberations to memorialize Governor

Kathy Hochul to Proclaim June 9, 2024 as Batten Disease Awareness Day in the State of

New York.

Adopted in the Senate on 4-9-24

Now we need all of your help.  We need you to share this with all your family, friends

and social & business contacts to help us raise money for International Batten Disease

Awareness Day.

What anyone can do is, to go to BDSRA Foundation.org and click on Advocacy and go

to 2024 International Batten Disease Day and create your own page for your contacts

to donate directly to by taking  about your interactions with our family or other Batten

families or you can go to Janet's page "Team Michele & Lauren" (use &) and make a

donation to honor the memory of our girls.  All donations are going directly to the

BDSRA Foundation for the "greatest needs".  Greats needs means anything form

funding research, staff members advocating at state offices or in Washington DC.

towards BDSRA's Annual Family Conference or to help with shipping costs for

equipment sharing between families who are done with certain equipment to other

families who need that equipment and many other programs for affected children and

for the SIBS programs.

Do what ever you can to keep BDSRA Foundation the premier source of research

funding to find treatments and/or a cure for Batten Disease.

Thank you,

Fred Surrey, Parent Advocate for a Cure

Member of BDSRA Board

Member of BDSRA Executive Committee 

Lauren & Michele's Sweet Sixteen Birthday's!