Batten Disease Scientific Conference

November 29 and 30, 2017
Bethesda, Maryland

Link to register for this conference:

To Sponsor- go to this web site: giv button and then click on event to sponsor this conference

2017 Nicholas Giving Tree for Children with Batten Disease.

December 11, 2017


We are hosting our 4th Nicholas Holiday Giving Tree. Fall is a time of giving! If you are interested in this kind of giving directly toward a Batten Family please click the sign up genius list below to see the items we need are seeking. We are sending small “shoe box size” care packages to the families December 11, 2017.  This is not a cure but it does give these families a small amount of joy during the holiday season. We hope this will bring a few families the feeling of love and kindness during a season which can be stressful as they care for their medically fragile children. Thank you for your support. You can contact me at Heather Dainiak

Easter Egg Hunt Festival 2018

March 31, 2018
NH Sportsplex
Bedford, NH

More information about sponsorship and tickets to come.

Check back soon.

2018 John Tanner Pumpkin Shuffle

SATURDAY, Oct. 14th,2018 11:30AM


To Benefit Children with Batten Disease. Race starts and finishes behind Russell’s Garden Center:
397 Boston Post Road, Wayland, MA
Every participant receives a free mini pumpkin. Special Guest: Erika Tarantal – Anchor/Reporter for WCVB in Boston. She reports for the New Center 5 Eye Opener and contributes to the stations new magazine program Chronicle.


To Sponsor: Go to our qgiv button then go to EVENTS.