Working together to understand and cure Batten Disease
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HOW CAN YOU HELP
Make A Donation
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How To Volunteer
Welcome to Our Promise to Nicholas Foundation!
Our primary mission is to create partnership to promote awareness, support toward
families, provide education and develop translational research regarding Batten Disease.
Sadly, Nicholas lost his battle to Batten on May 9, 2014, on his 11th birthday.
In keeping our promise to Nicholas, we continue to work toward a cure
for this childhood disease.
9th Annual Nicholas Giving Tree Project- Holiday Care Packages for Children with Batten Disease. November 27, 2023
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
Hello! Welcome to the 2023 - 9th Nicholas Giving Tree Project- Holiday Care Packages for Children with Batten Disease! This is our 9th year sending our holiday care packages to children with Batten Disease. We will be sending them to 61 children all over the United...
EGG HUNT FESTIVAL 2023
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
A well-loved community event in Bedford, New Hampshire raised $20,000 for the fight against Batten disease. This year was Our Promise to Nicholas Foundation’s fourteenth annual spring Egg Hunt.The Indoor Maze to the Egg Hunt was Saturday April 8, at the NH Sportsplex...
BDSRA Family Support Conference in Denton, TX July 13- July 16, 2023
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
This is our 9th year volunteering/working in the affected kids care room at the BDSRA Summer Family Conference. This year it was in Denton Texas. Thank you for the support from Mary Payton Miracle Foundation, Fore Batten Foundation, and many other family foundations...
BDSRA Family Support Conference in Denton, TX July 13- July 16, 2023
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
Our Promise to Nicholas Foundation funds nursing care support for the children with batten disease attending this conference. In this childcare room for children with Batten Disease we do lots of arts and crafts, play games, play with toys, sing, dance and give lots...
9th Annual Nicholas Giving Tree Project- Holiday Care Packages for Children with Batten Disease. November 27, 2023
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
This is our 9th year sending our holiday care packages to children with Batten Disease.We sent them to over 50 children all over the United States. We know these packages give the families a small amount of joy during a holiday that can be stressful caring for their...
April 8, 2023- A well-loved community event in Bedford, New Hampshire raised $20,000 for the fight against Batten disease. This year was Our Promise to Nicholas Foundation’s fourteenth annual spring Egg Hunt.
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
The Indoor Maze to the Egg Hunt was Saturday April 8, at the NH Sportsplex in Bedford New Hampshire. The egg hunt events began in 2009 as the first fundraiser for Our Promise to Nicholas Foundation. This charity was established when Bedford parents Heather and Chris...
Channel 9 WMUR Our Promise to Nicholas in the News – April 8, 2023
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
https://www.wmur.com/article/promise-to-nicholas-easter-egg-hunt-batten-disease/43545694
14th Annual Our Promise to Nicholas INDOOR MAZE to the Egg Hunt
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
DATE: Saturday April 8, 2023WHERE: NH Sportsplex Building #2, 68 Technology Drive, Bedford, NHTIME: 8:30AM- 12:00PM Doors open at 8:30AM and ends at Noon. Join us at the Our Promise to Nicholas INDOOR MAZE to the Egg Hunt! – We are happy to bring some joy to the...
9th annual Nicholas Giving Tree Project- Holiday Care Package for Children with Batten Disease
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
Fifty- five children with Batten Disease received holiday care packages from the 9th Nicholas Giving Tree Project. Seventy-five packages are filled with items the families would purchase to care for their child. These packages give the families a small amount of joy...
2022 Translational Research Conference for the Management of NCL’s November 3rd and November 4th , 2022
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
The 7th gathering of the Translational Research Conference for the Management of NCLs was on Thursday November 3rd and Friday November 4th at the Westin Chicago Lombard Hotel in Lombard Chicago. This conference organizing committee: Jill Weimer, David Pearce,...
NCL Translational Scientific Conference November 3 & 4, 2022 in Chicago.
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
Our Promise to Nicholas Foundation is excited to be working with a small committee to hosting the 7th NCL Translational Scientific Conference at The Westin Lombard Chicago Lombard, 70 Yorktown Center, Lombard, Chicago. The conference will be November 3 & 4, 2022....
BDSRA Family Conference July 7-10, 2022, Cleveland, Ohio
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
First thank you shout out goes to Meghan, Bridget and Erin Kelley who attend the conference with me from New Hampshire. They all take on a leadership role in the affected children’s care room. These young smart professional women take time out of their own busy lives...
13th Year- 25,000 Raised by Egg Hunt for Our Promise to Nicholas Foundation in 2022!
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
We have hosted this egg hunt event for thirteen years!This year Our Promise to Nicholas Easter Egg Hunt Festival was called theINDOOR MAZE to the Egg Hunt & Easter Bunny.Hosted on Saturday April 16, 2022, from 8:30AM to 12:00PM at the NH Sportsplex in Bedford, NH....
BDSRA Family Support Conference- July 8-10, 2022. Our Promise to Nicholas Foundation supports nursing care.
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
Our Promise to Nichoas Foundation will be supporting nursing care at $10,000 for the children with batten disease at this conference. The conference is July 8-10 in Cleveland Ohio. Heather Dainiak, Meghan Kelley, Bridget Kelley and Erin Kelley will be...
NCL Translational Scientific Conference November 3 & 4, 2022 in Chicago.
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
Our Promise to Nicholas Foundation is excited to be working with a small committee to hosting the 6th NCL Translational Scientific Conference in Chicago. The conference will be November 3 & 4, 2022. We are currently working with Dr. Jill Weimer, Dr. David Pearce,...
Nicholas Giving Tree Project 2022
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
This will be our 9th year hosting the Nicholas Giving Tree Project- Holiday care packages for children with Batten Disease in the US. In the past we have mailed out between 50-75 holiday care packages. We hope this gives these families a small amount of joy during a...
The Our Promise to Nicholas INDOOR MAZE to the Egg Hunt and Easter Bunny!
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
The Our Promise to Nicholas INDOOR MAZE to the Egg Hunt and Easter Bunny! DATE: Saturday April 16, 2022WHERE: NH Sportsplex Building #2, 68 Technology Drive, Bedford, NHTIME: 8:30AM- 12:00PMDoors open at 8:30AM and ends at Noon. On-Line Auction: Here is the...
12th Annual Egg Hunt Festival
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
Saturday April 16, 2022NH Sportsplex- 68 Technology Drive, Bedford, NH8:30AM- 12:00 PMSave the Date.Sponsorship opportunities and tickets will be available soon. Please check back for more details about our upcoming event! Happy New Year everybody!
2021 Nicholas Giving Tree Project – Holiday Care Packages to children with Batten Disease.
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
This is our 8th year sending our holiday care packages and we sent them to 52 children with batten disease all over the United States. We hope they give the families a small amount of joy during a holiday that can be stressful caring for their critically ill children....
2021 Nicholas Giving Tree – Holiday Care Packages
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
2021 Nicholas Giving Tree – Holiday Care Packages Please consider giving directly to a child with Batten Disease during the holiday from our wish list. We plan to send 55 or more holiday care packages to these children all over the US. Although it is not a cure for...
Bunny & Friends Parade Thru Event Sunday March 28, 2021
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
Our Promise to Nicholas Foundation – 2021 Bunny & Friends Parade Thru Event was on Sunday March 28 at the NH Sportsplex in Bedford. Another success for OPTN despite the cold weather and rained the entire event! Our mascots and volunteers are the ones who still...
The Bunny & Friends Parade Thru Event
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
DATE: Sunday March 28, 2021 PLACE: NH Sportsplex, 68 Technology Drive, Building #1, Bedford, NH. TIME: 12:00PM- 3:00PMCost: FREE! We will graciously except monetary donations of cash or check at the event. There will be a donation bin. At this free three-hour...
Happy New Year 2021!
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
2020 Nicholas Giving Tree ProjectDecember 2020 The 2020 Nicholas Giving Tree Project was a huge success! This was our 7th year sending our holiday care packages to the Batten Disease family community. These are small, but mighty, packages sent all over the US and a...
Dear Friends of Our Promise to Nicholas Foundation
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
The Our Promise to Nicholas Foundation has decided to CANCEL the Egg Hunt Festival on Saturday April 11, 2020. We love hosting this huge community event. This was going to be our 12th year! With the unknown spread of the Covid19 virus we fell it is our responsibility...
The Nicholas Giving Tree Project 2019
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
Thank you for your donations toward the 2019 Nicholas Giving Tree Project. This year we sent holiday care packages to 43 children in the US who suffer from Batten Disease. These care packages provided happiness and joy for these families at a time of year that can be...
5th Translational Research Conference for the Management of NCL’s, November 7 & 8, 2019, Chicago
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
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...
Dear Friends of Our Promise to Nicholas and John Tanner
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
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...
You are making a difference!
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
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...
BDSRA Family Support Conference July 18-21, 2019 Denver, CO
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
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...
The Nicholas Giving Tree Project 2018
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
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...
11th Egg Hunt raises $25,000 for Batten Disease by Our Promise to Nicholas Foundation
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
$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...
Crane of Light and Hope
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
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...
FDA APPROVES
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
FDA APPROVES first treatment for a form of Batten diseaseThe 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...
VIDEO IS FOR THE FAMILIES THAT ARE GOING THROUGH THEIR OWN TRIALS
by siteadmin | August 8, 2023 | Uncategorized | 0 Comments
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.
2021 NEWSLETTER
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
View our Newsletter from the previous year.
9TH ANNUAL NICHOLAS GIVING TREE PROJECT 2022- HOLIDAY CARE PACKAGES FOR CHILDREN WITH BATTEN DISEASE
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
This will be our 9th year hosting the Nicholas Giving Tree Project- Holiday care packages for children with Batten Disease in the US. In the past we have mailed out between 50-75 holiday care packages. We hope this gives these families a small amount of joy during a...
2018 JOHN TANNER PUMPKIN SHUFFLE 5 K
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
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...
BDSRA BATTEN DISEASE FAMILY SUPPORT CONFERENCE 2018 IN NASHVILLE, TENNESSEE
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
BDSRA Batten Disease Family Support Conference 2018 Nashville Tennessee. Thank you to our donors, sponsors, volunteers at our events, OPTN supporters, volunteers at the BDSRA in the affected kids room, our friends and our family who supported us to make this affected...
2018 EGG HUNT FESTIVAL
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
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...
2017 EGG HUNT FESTIVAL
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Egg Hunt Festival- On Saturday April 15, OPTN hosted their ninth 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....
2017 JOHN TANNER PUMPKIN SUFFLE 5 K RUN/WALK
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
John Tanner Pumpkin Shuffle 5 K Run/Walk- Saturday October 14, 2017, Russell’s Garden Center, Wayland, Massachusetts -This was OPTN’s 5th year hosting this run in a memory of John and his dedication to Nicholas and OPTN. This year we were honored to have Erika...
NICHOLAS GIVING TREE HOLIDAY CARE PACKAGES 2017
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
2017 Nicholas Giving Tree- December 11, 2017- Over 40 families located in New England and though out the US donated items and various gift cards for our annual Nicholas Giving Tree holiday care packages. These packages were sent to 28 families, throughout the US,...
SCIENTIFIC CONFERENCE 2017
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
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...
THANK YOU TO OUR SCIENTIST
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Here are a few photo’s I wanted to highlight and let you know I had the opportunity to talk with a few of my Batten Disease scientists celebrities! Here in blue is Dr. Jonathan Mink and his crew from the University of Rochester, NY. They met with many families at...
BDSRA FAMILY SUPPORT CONFERENCE 2017
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
BDSRA Family Support Conference July 6-9, 2017. Thank you to Our Promise to Nicholas donors, sponsors and volunteers for your support at our events over the year. Part of the money we raised at our events goes toward this nursing care at the summer Batten Disease...
JULY 2017
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Today this photo came up on my FB page to post. I have a love + hate for this photo. When I remember the time it was taken. There was the sting of Nicholas’ rapid decline in his health. Today there is not a day that goes by that I would love to wrap my arms around my...
JANUARY 2017
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Happy New Year! 9th Annual Easter Egg Hunt Festival Saturday April 15, 2017 NH Sportsplex – 68 Technology Drive, Bedford NH 8:30AM -12:00PM For Tickets and Sponsorship please go to the button on this web site that says Donate via QGiv, Then click on EVENTS Tickets on...
HAPPY HOLIDAYS 2016
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Please enjoy our newest Holiday Letter! annual-appeal-letterfinal
MARCH 2016 EASTER EGG HUNT AND SCIENTIFIC WORKSHOP
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Thank you to our sponsors, donors and volunteers. You make this happen for Our Promise to Nicholas! $41,000 Raised for Batten Disease, Researchers Gather in Bethesda Maryland.Easter was in full swing as the Our Promise to Nicholas Foundation’s (OPTN) 8th Annual Easter...
JANUARY 2016
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Our Promise to Nicholas in the News: My fight story was featured in a book/web site George Foreman III “Why we fight”: www.everybodyfights.com click on Shop, Click on The Book and Scroll to the fighter profile Rest in Peace to our Sweet BoyNicholas Robert...
DECEMBER 2015
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Nicholas Robert Dainiak May 9, 2003- May 9, 2014 Rest in Peace our son we miss you so much. 2015 Happy Holidays Thank you for your support!We would like to thank you, our sponsors. We have raised over $86,000 in 2015. We are excited to finish the year with a...
NOVEMBER/ DECEMBER 2015
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
This was our 3rd year hosting the John Tanner Memorial 5 K Run/Walk in Way-land MA. John Tanner an elite athlete and also Nicolas’s marathon runner. This run is dedicated to John who passed away unexpectedly while running the NYC ½ marathon for Nicholas in 2013. This...
NOVEMBER 2015
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
This was our 3rd year hosting the John Tanner Memorial 5 K Run/Walk in Way-land MA. John Tanner an elite athlete and also Nicolas’s marathon runner. This run is dedicated to John who passed away unexpectedly while running the NYC ½ marathon for Nicholas in 2013. This...
SEPTEMBER 2015
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
John Tanner Memorial 5 K Run and Walk DATE: Sunday October 4, 2015 TIME: 11:00 AM PLACE: 41 Cochituate RoadWayland , MA- Wayland Town Building NEW: Johnny Rocket 1 K Run for kids 10 and under.Register: Johntanner5k.racewire.com CLICK HERE! Sponsorship...
JULY 2015
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
John Tanner Memorial 5 K Run and Walk DATE: Sunday October 4, 2015 TIME: 11:00 AM PLACE: 41 Cochituate RoadWayland , MA- Wayland Town Building NEW: Johnny Rocket 1 K Run for kids 10 and under.Register: Johntanner5k.racewire.com CLICK HERE! Sponsorship...
JUNE 2015
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
7th Annual Fore! Nicholas Golf Tournament and Dinner Date: Saturday June 20, 2015 Place: Stonebridge Country Club, Goffstown NH Time: 1:30 StartPlease join us at Stonebridge for a special day and evening event to raise funds for Batten disease research. -Featuring an...
GREAT GREEN BALLOON RACE
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Great Green Balloon Race- 5 K Run/Walk in Honor of Nicholas DainiakClick here for the race link https://www.racereach.com/r/great-green-balloon-race-5k-run-walk Date : Sunday May 10, 2015 Place: Ross A. Lurgio Middle School, Bedford NH Time: 10:00 AM Adult 5 K 9:30AM...
EASTER EGG HUNT 2015
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
The Our Promise to Nicholas Foundation Raises $27,500 for Batten Disease.Lisa Kaveney, MS Developmental Director Easter was in full swing as the Our Promise to Nicholas Foundation’s (OPTN) 7th Annual Easter Egg Hunt drew in more than 1,200 guests who enjoyed the fun...
DECEMBER 2014
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Seasons Greetings! This season is about giving thanks for the miracles in our lives. In 2009, Our Promise to Nicholas Foundation (OPTN) was created with passion, promise and purpose. We vowed that in the future, no family would have to endure the loss of a child,...
HAPPY FALL FROM OUR PROMISE TO NICHOLAS FOUNDATION
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
John Tanner Memorial 5 K Run- Sunday October 19,2014 Thank you. Our event was a great success because of your support! Thank you to our sponsors: Superior Plumbing, Starz Salon, Performance Health Center, Stop and Shop, Vibram, TUNA, Russell’s Garden Center, Optical...
JULY 2014
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
John Tanner Memorial 5 K Run/Walk Date: Sunday October 19, 2014 Time: 11AM Location: Wayland Town Hall: 41 Cochituate Road, Wayland, MA 01778SPONSORSHIP : Click on button on the left that says: MAKE DONATION/GOLF SIGN UP- click on EVENTS- this will bring you to the...
6th Annual Fore! Nicholas Golf Tournament and Dinner
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Date :Saturday June 21, 2014 Time: 1:30 PM Place: Stonebridge Country Club, 161 Gorham Pond Road, Goffstown NH To sign up and Sponsorship: click on the DONATION/GOLF SIGN UP on the left panel of the web site. Then click on Events: Scroll down to Golf...
NICHOLAS R. DAINIAK
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Nicholas R. Dainiak, 11, of Bedford, NH, died on his birthday, May 9, 2014 at his home after a courageous six year battle with Batten’s disease. He was born in Waterbury, CT to Christopher and Heather (Noyes) Dainiak. Nicholas had lots of energy and enjoyed many...
2014 FUNDRAISERS
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
6th Annual FORE! Nicholas Golf Tournament and Dinner Date: Saturday June21, 2014 Time: 1:30 for Golf, 6PM for dinner Place: Stonebridge Country Club, Goffstown NH Contact: Heather and Chris Dainiak CLICK on “Make a Donation & EVENT SIGN UP” button on side panel...
DECEMBER 2013
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Our Promise to Nicholas Foundation was founded in April, 2009 and it’s hard to believe how much OPTN has evolved as we focus on raising money in the fight against Batten Disease. First, an update on Nicholas: In January we got Nicholas out to our backyard ice rink. I...
NOVEMBER 2013
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
We are all looking forward to Thanksgiving! We are so grateful for all the support from so many of our volunteers, sponsors, family, and friends and the entire community. The recent Halloween event was enjoyed by over 800 people! We certainly appreciate that...
OCTOBER 20, 2013
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
NOT SO SCARY HALLOWEEN PARTY Date: Friday October 25, 2013 Place: 68 Technology Drive, Bedford NH Time: 5-9PM Cost: $5 per person This will be an indoor Halloween party for children under 12 years old. They are invited to come in costume to join on a spooktacular...
OCTOBER 2013 FUNDRIASERS
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
UPCOMING FUNDRAISERSJohn Tanner Memorial 5 K Run DATE : Sunday October 20, 2013 PLACE: Start: Wayland Town Buildings 41 Cochituate Road Wayland , MA 01778 End: Russell’s Garden Center (back entrance), Wayland MA TIME: Start at 11:00 AM Cost: $35.00 On Sunday October...
PICTURES FROM GOLF, KARATE AND BIKE-A-THON FUNDRAISERS 2013
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Bike-a-ThonFundraiser at Bedford New Morning School Thank you for hosting a bike a thon for Our Promise to Nicholas Foundation and raising $500.00 Bedford Martial Arts Academy, Bedford NH Hosted a Summer Bash Party and choose OPTN as the benefit this...
JUNE 2013
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
UPCOMING FUNDRAISERS! BIG SUMMER BASH DATE: Thursday June 20, 2012 PLACE: Bedford Martial Arts Academy 334 Route 101, Bedford NH TIME: 4 PM- 7PM Admission Cost: FREE but any donations go toward OPTN Join us at Bedford Martial Arts Academy’s Annual BIG SUMMER BASH....
MAY 2013
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
HAPPY 10th Birthday Nicholas Today is Nicholas 10th Birthday. I am so blessed that he came into our lives 10 years ago. Today I have very mixed emotions about how I feel. Today makes me remember every minute of the day he was born. As new mom.. I was filled with...
APRIL 2013
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
JOHN TANNER All of us at the Our Promise to Nicholas Foundation are deeply saddened to learn of the untimely death of a beloved friend and supporter John Tanner during the New York City Half-Marathon on March 17, 2013 at the age of 47. John had been a long time...
MARCH 2013
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
EASTER EGG HUNT INFORMATION! MARCH 23, 9-11AM, NH SPORTSPLEX, BEDFORD, NHJOHN TANNER All of us at the Our Promise to Nicholas Foundation are deeply saddened to learn of the untimely death of a beloved friend and supporter John Tanner during the New York City...
DECEMBER 2012
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
December 2012 Happy Holidays! Nicholas is now 9 ½ years old and it is hard to believe that Our Promise To Nicholas Foundation was founded 4 years ago. We sat at our kitchen table with friends and family to discuss how to start a foundation.Each year this holiday...
OCTOBER 2012
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Happy Halloween Our Promise To Nicholas foundation had our 4th annual Bedford Outdoor Movie Night Fundraiser on Saturday October 20, 2012 at the Reilly Field Complex in Bedford NH. Thank you to our sponsors this year Carrabba’s Italian Grill, Community Events, Chris...
FALL 2012 UPDATE
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
This Fall Nicholas started 4th Grade. It is still hard for me to believe he is also almost 9 1/2. An up date on Nicholas. He had not had a seizure for about 6 weeks which is the longest stretch he had gone for a while with out a seizure. But when they came back, they...
AUGUST 2012
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
It has taken me about 6 months to update about Nicholas. But first I have many to thank in the past 6 months. NEW OPTN VIDEO CLICK HERE TO WATCH In March we had our 4th Annual OPTN/Bedford Mom’s Club easter Egg Hunt on March 31, 2012. It was a HUGH success raising...
FORE! NICHOLAS GOLF TOURNAMENT
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
4th annual FORE! Nicholas Golf Tournament and Dinner Thank you to all our volunteers and golfers at this years FORE! Nicholas Golf Tournament and Dinner! Thanks to you the event was a huge success. Please see your photos in the links below, provided by Debbie Ellis...
EASTER EGG HUNT 2012 INFORMATION
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
THANKS to all the MOMs and our amazing community for coming out to support such a great event. We far surpassed last year’s totals for people attended and money raised!
EASTER EGG HUNT FUNDRAIER 2012
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
SPONSORS AND ENTERTAINMENT ANNOUNCED FOR MOMS CLUB OF BEDFORD FOURTH ANNUAL EASTER EGG HUNT NH Sportsplex, IRA Lexus and Catholic Medical Center to Sponsor Charitable Event on March 31 to Benefit the Our Promise to Nicholas Foundation March, 2012 — Bedford, NH — The...
JANUARY 2012
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Happy New Year and welcome to 2012! I did not post in December because I was extremely busy getting OPTN holiday mailing out on time before Christmas. I mailed 950 letters. I like to think they are Nicholas’s fan club. I feel lucky that so many would be interested in...
HOLIDAY LETTER 2011
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Happy Holidays 2011. This is the letter that I sent out to 950 + friends of Nicholas as our OPTN 2011 memories. . Thank you for your continued support and reading my web site…… It is hard to believe it is December 2011 already and at the year end. Even though it is a...
SOUTHWEST INCIDENT
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Thank you everyone for your support of Nicholas. We are now home safe after our flight back from Disney World. Nicholas is doing well, but Heather is still shaken by the incident that occurred on Southwest Airlines. As you all know from meeting Nicholas personally or...
MEETING BOSTON RED SOX WALLY!
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Your content goes here. Edit or remove this text inline or in the module Content settings. You can also style every aspect of this content in the module Design settings and even apply custom CSS to this text in the module Advanced settings.Watch this you tube video of...
OCTOBER 2011
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
A quick update since Nicholas g-tube was placed on August 4, 2011. He had lost nearly 10 pounds over the summer and had difficulty opening his mouth and chewing his food. It was very stressful for both Nicholas and I so Chris and I decided it was time for a feeding...
JUNE/ JULY 2011
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Welcome to mid summer. An update on Nicholas. School seemed to end quickly this spring and we quickly moved into summer fun to begin. How is Nicholas. I wish I could say that Nicholas has maintained from the last post but he continues to decline and I can see it...
MAY 2011
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Happy 8th birthday Nicholas and Happy 11th Anniversary to Chris and I! Nicholas birthday was on May 9th and it is still hard to believe that he turned 8 this year. It actually was a very tough day for me to get through knowing Nicholas’s future. I spent part of the...
MARCH/APRIL 2011
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Spring is here! I always have to start our first line as “we continue to be so busy with Nicholas!” Every day Nicholas’s day is filled with an adventure would be the best way to describe it!First, an update on Nicholas. We had our 6 month evaluation in NYC for the...
JANUARY/FEBRUARY 2011
by siteadmin | August 7, 2023 | Uncategorized | 0 Comments
Nicholas remains busy starting the new year. He is still walking with full assistance, walker or assistance with wheel chair at home and school. He still loves his toys (especially his trains) and Disney movies. The month of January Nicholas did experience an increase...
DECEMBER 2010
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
December 2010 Dear Friends and Family, Happy Holidays! I take time to reflect on Our Promise to Nicholas (OPTN) Foundation, our family and Nicholas. We started January taking a two week trip to Xenia Ohio for Nicholas service dog Shane. Make a wish granted Nicholas...
OCTOBER 2010
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Nicholas has been well since his brain surgery on August 24, 2010. He has returned back to school and his after school therapies. He was very lethargic and tired for the first 4 weeks after surgery. There were days when he hardly spoke a word and his walking was not...
SEPTEMBER 2010
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
We were called. We were called/invited for Nicholas to participate into the phase I gene therapy trial in NYC but were given a two week notice. When Chris told me the news my stomach burned and I filled with anxiety. This could be Nicholas’s only chance to live. ...
LETTERS TO FAMILY WHILE IN NYC
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Below are 5 letters that I wrote to family and Friends while we were going through our journey in NYC. I thought I would share them on my web site. If you want a more detail and more pictures of day by day of our journey in NYC read September post 2010.Update Letter...
AUGUST 2010
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Nicholas had a busy summer. Here are some more pictures from time at the Red Sox! He continues with PT, OT, Speech, Horseback riding and Massage every week. Never a dull moment here! Here are a few pictures from the summer. Thank you Laura Pace for setting this all up...
JULY 31, 2010
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
July just slipped by so quickly this year! Here is another quick update on Nicholas this month. He is doing well and remains very stable. I am not noticing any significant changes in this last month. Which is good. Only one two day virus with a few seizures but...
JUNE 29, 2010
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Welcome to our new web site! We love it!The month of June has been busy at our house. With the end of the school year and the beginning of summer. Nicholas remains about the same medically with still a few seizures a month due to various virus that we think he must...
2ND ANNUAL GOLF OUTING
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Photos from Our Promise To Nicholas 2nd Annual Golf Outing, Friday June 18, 2010 Stonebridge Country Club. We raised $17,000. It was a great event! Thank you to Stonebridge Country Club. They went out of their way to ensure a successful day for us. We are proud to...
WELCOME TO OUR NEW SITE! 2010
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Thank you for visiting the redesigned Our Promise To Nicholas web page! We are still under construction and the process of fine tuning continues. We wanted to share what we have so far as we continue to bring awareness to Batten Disease. In the next couple of weeks...
MAY 19, 2010
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
I am not sure where the time went this month. Nicholas is been very stable in the last two months with no apparent changes. His seizures control also remains pretty good and only having seizures due to stomach bugs which lower his threshold. Nicholas is totally blind...
MARCH 5, 2010
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Nicholas has started therapeutic horse back riding this month and he giggles and laughs the entire sessions. It is worth every minute of getting him to each session. He LOVES it! Attached is a youtube post you can see him laughing (I am laughing too as he keeps...
JANUARY 31, 2010
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Happy New Year! Nicholas has continued to be stable this month. He has had a few seizures this month but prior to this he went nearly 3 months with out a seizure. Luckily we were able to only change the time of his evening medicine and not add an increase. He...
DECEMBER 31, 2009
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Christmas eve: “WOW mom! Santa left presents for us at our door step!” per William my 3 year old. A anonymous person in our community left a tag only saying Love Santa. Chris and I were so touched. I was looking at a picture of Nicholas and William at Santa’s Village...
NOVEMBER 30, 2009
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
We took a trip down to Disney World in Orlando Fl at the end of last month and stayed for Halloween. It was a fun trip despite Nicholas getting sick as soon as we got down there. We think it might have been from receiving the H1N1 vaccination only a few days before...
OCTOBER 19, 2009
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Finally Fall. Nicholas continues to be doing well. He has been using his walker at school sometimes and wears his AFO’s (leg braces), we just got him re-casted for the AFO’s because the first pair did not fit properly. It is difficult to determine if it is because his...
SEPTEMBER 26, 2009
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Nicholas has been doing excellent for the past month. With only a few seizures last weekend. He had gone almost 4 weeks without a seizure prior. He is moving forward in physical therapy with great strengh and determination. He has started 1st grade at the...
AUGUST 20, 2009
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
This month we have been so busy. I will start first with how Nicholas is doing. He really has continued to decline this month both with his eye sight and mobility. It has been very difficult for us to watch this rapid decline. Here is a picture of Nicholas with a...
JULY 20, 2009
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Hello! Sorry it has taken me so long to post July’s notes. A lot has gone on here and I will start with the best news first! William does not have Batten disease! He is not a carrier of my gene defect. We are still waiting for Chris’s gene testing to come back. The...
JUNE 9, 2009
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
It has been a while since the last post. Nicholas has been doing excellent on the new medicine regimen. He did have a small set back last Sunday with a small seizure but otherwise his mobility has been good. He is able to run around without falling for about 10-15...
MAY 12, 2009
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Happy 6th Birthday Nicholas! We love you so much!Nicholas celebrated his 6th birthday with friends and famiy on his actual birthday May 9th. It was at the Bounce U at his request as it is a familar place to him and he had a blast. I was very worried that he would not...
APRIL 15, 2009
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Lots of updates from the last post. Where do I start……We recently had two doctor appointments last week. The first was a 3 hour ophthalmology appointment at Children’s hospital in Boston. A VEP test done (Visual Evoked Potential Test) in which electrodes were placed...
MARCH 24, 2009
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Nicholas is doing well. Check out this picture of him on his bike. I did not think he could a ride a bike. He jumped on his bike and rode down the driveway faster than I could say “NO!”. I could not believe it. Next see him back at soccer. We have missed 6...
February 20th We are home!
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Wow what a week…or actually 3 weeks. Nicholas has been very sick for the past three weeks with many more seizures. It was a difficult time for all of us. We thought the increase seizures were from a virus, levocarnatine or even a possible bacterial infection.The...
FEBRUARY 1, 2009
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
We learned on Thursday January 22 at Mass General Hospital in Boston that Nicholas has classic late infantile NCL. He has a defect in the gene CNL2, which impairs the production of the enzyme TPP1. We were prepared for the information but I did find it a bit...
JANUARY 11, 2009
by siteadmin | August 4, 2023 | Uncategorized | 0 Comments
Happy New Year. Thank you for your touching emails and postings. Nicholas is doing well. He has had a few more seizures in the past few weeks and we have had to add a 12:30PM dose to his daily medications. I will be adding a tab about Nicholas past year of actual...
DECEMBER 2008
by siteadmin | August 3, 2023 | Uncategorized | 0 Comments
Here is my first post. We boarded the polar express train in North Conway NH with 12 tickets the week before Christmas with family. This brought Nicholas tremendous joy to be on the train. He is an avid watcher of the polar express train movie and he knows every song....
