Pumpkin Shuffle

SATURDAY, Oct. 14th,2017 10AM


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 is Cindy Fitzgibbon, WCVB Boston Meteorologist

9th Annual Easter Egg Hunt 2017

$25,000 Raised for Batten Disease.


Easter was in full swing as the Our Promise to Nicholas Foundation’s (OPTN) 9th Annual Easter Egg Hunt drew in more than 1,100 guests who enjoyed the fun festivities at the NH Sportsplex in Bedford.  The dome was alive with smiling faces, with colorful eggs blanketing the fields and kids scurrying about for those coveted treats.

FDA approves first treatment for a form of Batten disease

The U.S. Food and Drug Administration today approved Brineura (cerliponase alfa) as a treatment for a specific form of Batten disease. Brineura is the first FDA-approved treatment to slow loss of walking ability (ambulation) in symptomatic pediatric patients 3 years of age and older with late infantile neuronal ceroid lipofuscinosis type 2 (CLN2), also known as tripeptidyl peptidase-1 (TPP1) deficiency.

Read More…

Matty O’Leary

Our primary mission is to raise funds and create partnerships in order to promote awareness, provide education and develop translational research regarding Batten Disease.

Apply for research grants at our sister site:

BattenLogo_FinalThe mission of the Batten Research Alliance (BRA) is to solicit, accept, and provide an unbiased peer review of research proposals for the purposes of funding worthy medical enterprises to work towards curing Batten Disease. In the future it will provide needed medical information and resources to physicians, nurses and other medical personnel. By bringing other nonprofits, individuals, organizations, and the Batten medical world together, we can share ideas and be a stronger voice in the world. To become a member of the BRA, to submit research proposals, or for more information please visit BattenResearch.org.

January 2017

Happy New Year!
9th Annual Easter Egg Hunt Festival

Saturday April 15, 2017
NH Sportsplex – 68 Technology Drive, Bedford NH
8:30AM -12:00PM
For Tickets and Sponsorship please go to the button on this web site that says Donate via QGiv, Then click on EVENTS

Tickets on line– $8.00 per person and $28.00 per family (4) – print your receipt and bring to the event!
Tickets at the door $10.00 per person and $32.00 per family (4)
Your ticket will include: Egg Hunt among 10,000 eggs!, Live Children’s entertainment, music, children’s games, Bouncy house, face painting, prizes and photos …

This video is for the families that are going through their own trials. All the trials are similar to the one we went through with Nicholas.