2018 John Tanner Pumpkin Shuffle

SATURDAY, Oct. 13th,2018 11:30AM

397 Boston Post Road, Wayland, MA
Race starts and finishes behind Russell’s Garden Center. Every participant receives a free mini pumpkin.

Dear Friends of Nicholas and John,

We are happy to announce the John Tanner Pumpkin Shuffle 5 K Run/Walk Saturday October 13. Formally called the John Tanner Memorial Race. This year the race will start and finish in the parking lot behind Russell’s Garden Center 397 Boston Post Road. Extra parking is reserved at the Wayland Town Hall at 41 Cochituate Road and take the short walk to Russell’s Garden Center (there will be signs to direct your way).

John was a friend and competitive runner who dedicated 5 years of his life running for Nicholas. He passed away in 2013 while running the NYC half marathon. Sadly, Nicholas also lost his battle to Batten on May 9, 2014, on his 11th birthday. In keeping our promise to Nicholas and John, we continue to work toward a cure for this childhood disease. Please consider making a tax-deductible donation to the 5th Annual John Tanner Pumpkin Shuffle 5 K.  Your support will make a difference in the lives of children with Batten Disease, and help us keep our promise.

John Tanner Memorial 5K remembers an inspirational pair

To SPONSOR the John Tanner Pumpkinm Shuffle 5k Race CLICK HERE
To REGISTER for the John Tanner Pumpkin Shuffle 5k Race CLICK HERE
Have questions: Please contact Heather at Ourpromisetonicholas@hotmail.com

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

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.

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

BDSRA Batten Disease Family Support Conference 2018 in Nashville, Tennessee

BDSRA Batten Disease Family Support Conference 2018 Nashville Tennessee. Thank you to our donors, sponsors, volunteers at our events, OPTN supporters, volunteers at the BDSRA in the affected kids room, our friends and our family who supported us to make this affected kids room a success each year. I believe we were scheduled to have 48 affected children in our care. They did not all come at once. It was again very very busy at times with arts and crafts and lots of playing. At our busiest times I was not able to take as many photos’s as I would have loved. We want this experience and care for the children and families affected by batten disease to be the best. They deserve it. Thank you for all who helped us to make this care awesome! You …

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.