2018 Egg Hunt Festival

On Saturday March 31, 2018, OPTN hosted their tenth Egg Hunt Fundraiser. It drew in more than 1,100 guests who enjoyed the fun festivities at the NH Sportsplex in Bedford, NH. Over 10,000 candy filled colored eggs covered an entire indoors sports field. Kids enjoyed this festive morning event playing games, listening to music, enjoying live entertainment, face painting, jump houses, painting with Canvas road show, scrumptious goodies and photos with the Easter Bunny! This year OPTN is proud of the many corporate sponsors, personal sponsors and volunteers who made this event so successful, raising over $25,000!

Click here to see the photos from the event.


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.

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.

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Matty O’Leary

2018 EGG HUNT FESTIVAL

Egg Hunt Festival- On Saturday March 31, 2018, OPTN hosted their tenth Egg Hunt Fundraiser. It drew in more than 1,100 guests who enjoyed the fun festivities at the NH Sportsplex in Bedford, NH. Over 10,000 candy filled colored eggs covered an entire indoors sports field. Kids enjoyed this festive morning event playing games, listening to music, enjoying live entertainment, face painting, jump houses, painting with Canvas road show, scrumptious goodies and photos with the Easter Bunny! This year OPTN is proud of the many corporate sponsors, personal sponsors and volunteers who made this event so successful, raising over $25,000!

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.