The Nicholas Giving Tree Project 2018
We had over 50 private donors from New Hampshire, Massachusetts, Vermont and as far as Illinois & Michigan who donated toward the Nicholas Giving Tree Project 2018. Thank you also to Eastern Bank in Bedford NH for setting up a giving tree in their lobby! Thank you to Jannette Mooney Law office of Amherst NH who sponsored the mailing! Thank you to our many volunteers who helped with this project! We sent care packages to 37 families who have children with all different types of Batten Disease all over the US. This is 12 more families than last year! Some of these families have more than one child with this fatal brain disease. The final packages were mailed out on Monday December 17, 2018. In addition to the generosity of the donation of gifts and gift cards this year the children were provided with thoughtfully handcrafted wintergreen sachets, gorgeous cards, jingle bells and medals won by elite athletes in New England. I think this kind of humanity, kindness and grace is what the holidays are about. Thank you very much for your support and love toward these families. Your continue support does make a difference
Here are a few photos of children with Batten Disease who received this year’s the 2018 Nicholas Giving Tree Project care packages. If you are interested in donating items to the packages for 2019 or if you are a family who has a child with Batten Disease and want to receive a care package in December 2019 please contact us at Heather Dainiak : firstname.lastname@example.org
Our primary mission is to raise funds and create partnerships in order to promote awareness, provide education and develop translational research regarding Batten Disease.
Crane of Light and Hope
OPTN has teamed up with an inspirational 16-year-old New Hampshire entrepreneur. Anna is a local artist and a sophomore high school student. As a young girl she began to design these gorgeous delicate origami cranes of hope in honor of her grandfather who was battling cancer. Anna was inspired by the children’s book Sadako and the The Thousand Paper Cranes by Eleanor Coerr. The story is about a girl who makes one thousand paper cranes to reach the gods for one wish. This handcrafted origami crane ornament, representing light and hope, was designed by Anna especially for Our Promise to Nicholas.
Ornaments are $12 each. Please donate $12.00 on my qgiv button on this site or send me a check in the mail address to OPTN- PO Box 10106, Bedford, NH 03110. Please include $3 for shipping. Thank you.
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!
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.
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.