The Nicholas Giving Tree Project 2019

We are hosting our 6th 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 13 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 11. I will be putting the packages together over the week- to be mailed on December 13. Please drop off items early: For my address- please email me and I will send you my address. If you are purchasing gift cards please mail them to me at Our Promise to Nicholas Foundation PO Box 10106, Bedford, NH 03110.

Where to find items needed?
EASTERN BANK- 1 Atwood Lane, Bedford, New Hampshire- The bank is hosting a tree in their lobby with tags for this Nicholas Giving Tree Project. Please pick up tags and return items to Eastern Bank before the due date.

CLICK HERE- Sign Up Genius Link for Items needed for the Nicholas Giving Tree Project

If you are shopping for items listed- many can be found at Walmart, Target, CVS, Rite Aid, Walgreen’s and Amazon. You can purchase and send items directly from Amazon to the Our Promise to Nicholas Foundation, PO Box 10106, Bedford, NH 03110. If you need and home address please contact me at heatherdainiak@hotmail.com.

No donation is too small for your gift toward this project.

Kindness Always Makes a Difference. You all inspire me- thank you for opening your hearts to these families who have children with Batten Disease.

Thank you! Thank you! Thank you! Thank you! Thank you!


5th Translational Research Conference for the Management of NCL’s, November 7 & 8, 2019, Chicago

Another successful conference with so much essential interactions and discussion between these scientist, researchers, clinicians and pharmaceutical companies. Grateful to see valuable communication, science and research advancing at a much faster pace for all NCL’s then 10 years ago. A cure for this disease does not seem so far way. Largest conference hosted with 36 speakers and 75 attendees!

Thank you to our sponsors supporting this conference- Noah’s Hope & Hope 4 Bridget, Fore Batten Foundation, Drew’s Hope Foundation, Haley’s Heroes Foundation, Mary Payton Miracle Foundation, Garrett the Grand Batten Fighter Foundation, Team Penelope, Dr. Sandra and Mr.Steven Lehrman Family, BDSRA, Beyond Batten Disease Foundation, Taylor’s Tale Foundation, Regenxbio, TherVoyant, Orphion Therapeutics, Amicus Therapeutics, Sanford Health, Dr.Jill Weimer, Sarah Hague, Dr. David Pearce.

Thank you to Our Promise to Nicholas Foundation supporters.We continue to do great things here because of you!


Dear Friends of Our Promise to Nicholas and John Tanner,

On behalf of Our Promise to Nicholas Foundation we regret to inform everyone that the John Tanner Pumpkin Shuffle 5 K held on October 19, 2019 will be cancelled.

It has been an amazing 7 years hosting this race but each year there is less participation. We hope to kick off 2020 with a fresh start and a new event!
With your support, Our Promise to Nicholas Foundation has been able to provide family support for children stricken with this fatal brain disorder called Batten Disease. Because of your support we have also helped us raised money that has gone toward numerous important Batten Disease science such as the natural history and biorepository database and our scientific conferences. This brings expert Batten Disease clinicians and researchers from all over the world together to collaborate on the best way to cure this disease.
As you know we continue to remain very busy. We are supporting and helping to the fund our 4th scientific conference which will be in Chicago November 2019. We have provided the support for funding a NCL Research Clinic Coordinator at Massachusetts General Hospital. We are also proudly supporting the re-opening of a batten disease clinic at MGH for all types of batten disease.

Please continue to follow us and support our charity as we continued to travel down a new journey and into the rare disease community. We have exciting avenues connecting Our Promise to Nicholas Foundation to have earned the support from Massachusetts General Hospital, one of the top facilities in Boston. We appreciate your love and kindness toward our Nicholas and John Tanner’s Family. Please keep an out out for an upcoming event for 2020!

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!


BDSRA Family Support Conference July 18-21, 2019 Denver, CO

Another fantastic BDSRA Batten Disease Family Support Conference in the books. This year the 2019 conference was located in Denver, Colorado. Thank you to our Our Promise to Nicholas sponsors and volunteers supporting our events in NH and MA. Some of the money we raise goes toward this conference for nursing care support. RN and LPN’s are hired to help us care for the kids affected with Batten Disease. We are also thankful to have the support by many volunteers in our affected child care room (parents, family, friends and also nurses from previous conferences- came to help us at this one in Denver)- we feel very blessed by the support. Thank you to the Benroth Family and Friends for your tremendous support toward child care. We loved having you with us this year!

Thank you to Meghan Kelley, Bridget & Chris Kelley, Erin Kelley and Hannah Euler for joining us every year with smiles, love and kindness toward our kids. You have brought this room to a new level each year with crafts, keepsakes and care. We stayed busy with the kids doing many many art projects, playing with toys, running the halls, throwing balls and watching movies. We even build a fort out of tables, chairs and table clothes- because why not. As you see in the photos we had a blast and hope the kids did too!. We were visited by therapy dogs and 1 therapy cat.

The kids also had a blast in a music therapy session! (sponsored by Ethan’s Reason Foundation)

Thank you to Amy and Dan Noyes from Vermont for obtaining a huge donation of animal socks for the kids. They were loved.
Thank you Pauline King for your hand crafted hats!
Thank you Southern National Charity League of New Hampshire (Mother’s and Daughters) for making picture frames and blankets for us to bring to the kids.
Thank you to Patrick Ellis and Leading Edge Chapter BNI of New Hampshire for donating Children Tylenol and Motrin for the kids!
Thank you to the Batten Sibling (whom I don’t know her name) from Denmark who professionally painted the kids faces. We loved it and so did they!
Thank you to the BDSRA, Pharmaceutical Companies and Family Foundations like ours that support the BDSRA Family Support Conference.
We missed the families who could not attend this conference this year and our hearts are heavy for the children who have passed away since our last conference.

And a million thank yous to the families with Batten Disease allowing us to take care of your children while at the conference.

We love them!


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


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


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.

Read More…

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.