You are making a difference!

Thank you to Dr. Jon Mink University of Rochester, Dr. Susan Cotman (MGH/Harvard University) and Dr. Florian Eichler (MGH/ Harvard University) for all you do! Chris and I met with these spectacular folks in Boston on Saturday June 1, 2019. The bond between the University of Rochester and Massachusetts General Hospital remains strong. They are both working together as a team on the Natural History and Biorepository Database for children with all types of Batten Disease. A database is vital in the cure of any disease. This database Our Promise to Nicholas has worked many years fundraising toward continues to be utilized by expert NCL clinician, scientist and researchers.

We are also proud to support Dr. Florian Eichler and his team of clinicians at MGH. He has the past history treating children with rare diseases. He has the drive and passion to follow in Dr. Kathy Sims footsteps and re-open the NCL (Batten Disease) clinic for all types of NCL patients. This is great news for New England to have him on our team. If you have a child with NCL or a rare neurological disease I can put you in contact with Dr. Eichler. Spread the word!
Thank you all for your support toward our charity. You are making a difference!


11th Egg Hunt raises $25,00 for Batten Disease by Our Promise to Nicholas Foundation

$25,000 Raised for Batten Disease.

Easter has come and gone and we look forward to summer, but it is nice to remember a wonderful event this spring. The Our Promise to Nicholas Foundation’s (OPTN) 11th Annual Easter Egg Hunt drew more than 1000 guests who enjoyed the fun festivities at the NH Sportsplex in Bedford. The dome was alive with smiling faces, with 10,000 colorful eggs blanketing the fields and kids scurrying about for those coveted treats. Meanwhile, over 70 Easter Egg baskets were claimed by lucky winners.
Children ducked under 20-foot stilt walker Troy Wunderle, amazed at his height and his perilous performances.
Dancers mamboed and congaed with 12 mascots, including Tessie from the Red Sox. Music was DJ’d by DJ McHoopsta (Heath Hooper), there were performers, Toe Jam Puppet Band, balloons by Granite State Clowns, Jump Around Bouncy Houses, Canvas Roadshow as well as a special appearance by the Easter Bunny, NH Fisher Cat Fungo and Max the Monarch.

Event sponsors brought out there best treats at their tables, filling take home bags with gifts and coupons. It was a wonderful opportunity for local businesses and services to interact with parents and children at a fun and worthwhile event. More than 35 sponsors attended this year, including Executive Health and Sports Center, NH Sportsplex, Catholic Medical Center, Bedford Ambulatory Surgical Center, Derry Medical Center of Bedford and Derry Imaging, Elliot Hospital, Eastern Bank, Rothwangl Dental Care, Spectrum Marketing Company, SNHU Arena, and Granite State Gastrointestinal Consultants.

Eleven years ago, the Egg Hunt was started to create joy and celebrate Nicholas’s life, providing hope to those families across the country with children stricken with this disease. Today we have come a long way and the organization continues to grow with the support of the community. OPTN is making a difference because of you. We thank you!

To learn more about Our Promise to Nicholas Foundation, the difference we are making, and our upcoming events and opportunities for sponsorship, please visit OurPromiseToNicholas.com
If you are interested in providing support for the Nicholas Giving Tree this fall, please contact us at heatherdainiak@hotmail.com


The Nicholas Giving Tree Project 2018

Thank you!

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


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!

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.