The Nicholas Giving Tree Project 2018

 

We are hosting our 5th Nicholas Holiday Giving Tree Project.  If you are interested in this kind of giving directly toward a Batten Family here are items that will be needed for the packages. We are sending small “shoe box size” care packages to the families. The boxes are actually priority mail boxes which will be shipped at a flat rate and they are the size of a shoe box. Sizes of the items are small so many items can fit into the boxes. We are also seeking various gift cards. The packages will be mailed out December 10 for the holiday. Hope this will bring a 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!

Deadline for Drop off is December 9.  I will be putting the packages together over that weekend- to be mailed on December 11.  To drop off items: For my address- please private message me and I will send you my address.

  • If you are purchasing gift cards or items to put in the care packages: please mail them to me at Our Promise to Nicholas Foundation PO Box 10106, Bedford, NH 03110 before December 9.
  • If you are dropping off the items to my house or if you are local I can pick them up- email me or contact me at the phone number below.
  • If your shopping for items listed- many can be found at Walmart, Target, CVS, Rite Aid, Walgreens and Amazon.  Gift cards are most wanted.
  • If you are a family with a child with Batten Disease and would like to receive a care package for your child this season.  Please contact me.

Kindness Always Makes a Difference. You all inspire me- thank you for opening your hearts to these families who have children with Batten Disease. No donation is too small and they are all appreciated.

heatherdainiak@hotmail.com  603-785-4249

Here is the link to our sign-up genius:


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.

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Matty O’Leary

2018 John Tanner Pumpkin Shuffle 5 K

Thank you to our sponsors for this race. Congress Asset Management of Boston, Superior Plumbing of MA, Russell’s Garden Center, Paul and MaryAnn McLaughlin Family Foundation, Merrifield Garden and Design, Castlemeghan Concepts, Tuna Landscaping, Stop and Shop of Wayland, Wegmens of Natick, Karma Coffee of Sudbury, Cooks Automotive of Wayland, The Villa Restaurant of Wayland, Global Goods, Great Harvest Bread, Performance Health Center and anonymous donors. Thank you Peg Mallott for taking photos, DJ Heath Hooper, the race timing company Mike and Cathy Merra- North Star Timing of Nashua NH, guidance from marathon runner- Julie Gillis. Thank you to our many volunteers, friends and family who made this event possible. Thank you to the Batten Families who provided our runners and walker with a photo of your child to be part of our race! It was a …

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.