Events

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 and SIGN UP for the JOHN TANNER PUMPKIN SHUFFLE 5K CLICK HERE
To REGISTER for the JOHN TANNER PUMPKIN SHUFFLE 5K CLICK HERE


Easter Egg Hunt Festival 2018

March 31, 2018
NH Sportsplex
68 Technology Drive
Bedford, NH

8:30AM- 12:00PM

For more information about this event. Return to the main menu. Scroll down the page on this web site to 10th Annual Egg Hunt Festival 2018.

To purchase tickets or sponsor the event: Click on Qgiv Button, then click on “Events”

Questions: Please contact heatherdainiak@hotmail.com


BDSRA Family Support Conference

Batten Disease Support & Research Association (BDSRA)- Family support conference was July 6-9, 2017 in Pittsburg, Pennsylvania. OPTN sponsored 20 nurses to help medically care for 55 children with several types of Batten Disease. We kept everyone very busy with toys, arts & crafts, and handprint keep sakes for all the kids.

To the right is a photo of Dr. Susan Cotman and her crew collecting blood specimen from the children with Batten Disease. This collection is for the natural history and biorepository data base OPTN has sponsored for the past two years, which is critical to ongoing research efforts.

To Sponsor: Go to our qgiv button and then click on event to sponsor this conference


Batten Disease Scientific Conference

November 29 and 30, 2017
Bethesda, Maryland

Batten Disease Scientific Conference for November 29 and 30th, 2017 Bethesda, Maryland. OPTN, along with the support of other family foundations, BDSRA, Beyond Batten Disease Foundation and a several pharmaceutical companies funded the 4th scientific workshop. 57 leaders, researchers, and scientist throughout the world came together to update their findings on current research. We came away with ideas for collaborations and renewed optimism about the horizon of meaningful therapy for Batten Disease. For the first time we talked about newborn screening for this disease to identify those children that can be treated before the disease can cause irreversible damage.

Link to register for this conference:

To Sponsor: Go to our qgiv 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

http://www.signupgenius.com/go/5080f4daeab2fa75-nicholas