We will continue our fight

to find a cure for

BATTEN DISEASE !!!






or mail donations to:  

PO Box 924, Newtown, PA  18940    


Contact Us      tonykatie1@me.com

 
 
 
 
 

Drew  Ferrandino

February 1, 2002 - September 30, 2014


God saw you were getting tired, And a cure was not to be. So he put his arms around you and whispered, “Come to me”.


With tearful eyes we watched you, And saw you pass away. Although we loved you dearly, We could not make you stay.


A golden heart stopped beating, Hard working hands at rest. God broke our hearts to prove to us He only takes the best.


#flyhighdrew





Amazon will donate

a portion of your purchase to

Drew’s Hope!


Click here to add Drew’s Hope to your Amazon Account

                           


National Organization for Rare Disorders (NORD)

May 19, 2015

National Building Museum, Washington, DC

Tony was honored with a Portrait of Courage Award!!!

 


4th Annual Full House of Hope

Casino Night


Saturday, February 2, 2019


We raised $21K!


Thank you for another incredible

evening of love and support to

continue our efforts to find a cure for Batten Disease in Drew’s memory!

A huge THANK YOU to

Rotary Club of Shady Brook

12th Annual Charity Golf Outing

for raising

$12,000

Thank you for an incredible event!

October 24, 2018


In the News


FDA Grants Orphan Drug Designation to RGX-181 Gene Therapy for the Treatment of CLN2 Form of Batten Disease - 11/14/18


FDA Approves first treatment for Batten Disease - 4/27/17


Popular Science Names BioMarin’s Brineura One of the Top Health Innovations of 2017 - 10/18/17