NCL Translational Scientific Conference November 3 & 4, 2022 in Chicago.
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. We are currently working with Dr. Jill Weimer, Dr. David Pearce, Tracy Van Houtan (Noah’s Hope/Bridget Hope), Karen Kahn / Carol Schwimmer (Fore Batten Foundation) and The Lehrman Family.
This intimate Batten Disease conference/workshop is essential to foster good respectful interactions and discussion between these scientist, researchers, clinicians, and pharmaceutical companies. In the past this conference was called a “workshop” allowing an open question and discussion session after a panel of 2-3 speakers spoke on a specific topic of research or findings in their lab. This brings great safe positive collaboration, open discussion and sharing information between all attendees. Each conference we are grateful to see this valuable communication between science and research and firsthand seeing this specific rare disease advancing at a much faster pace for all NCL’s then 10 years ago. A cure for Batten disease does not seem so far way. The covid pandemic may have slowed things down in this rare disease circle but we are excited to get back up running. The last conference was in 2019 hosted 36 speakers and 75 attendees. Stay tuned for more information and sign up/ sponsorship for this conference is coming soon.
Registration and Sponsorship Link:
Registration: $250.00/ person- includes all meals
- Bronze: $500 (Includes registration for one attendee)
- Silver: $1,500 (Includes registration for two attendees)
- Gold: $2,500 (Includes registration for three attendees)
- Platinum: $5,000 (Includes registration for four attendees and named sponsor of one meal)
- Diamond: $10,000+ (Includes registration for eight attendees and named sponsor of one meal)
To Register for the conference- Here is the link:
The Westin Chicago Lombard
70 Yorktown Center
Chicago, IL 60148
Locked in conference price $149-$159.
Deadline for hotel Block Reservations is Thursday October 13, 2022
Here is the hotel link:
O’Hare International Airport
This airport is 30 minutes to the hotel. There is no shuttle service provided by the hotel. Plan to take a uber or taxi. Cost will be between $38-$50.
2019 NCL Translational Research Conference for management of NCL’s
9th annual Nicholas Giving Tree Project 2022- Holiday Care Packages for Children with Batten Disease
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 holiday that can be stressful caring for their critically ill children. These small shoe box size care packages included items such as new bed sheets, neck pillows, cozy new pajamas, toiletries, gift cards (to purchase over the counter medications such as Tylenol/Advil or what they need to care for their child), holiday cards, holiday candy and lots of love. Holiday care packages will be mailed out the week of.
Deadline for donations will be December 2, 2022, and packages will be mailed out by December 5.
Here is our 2022 Amazon Wish List- Thank you for your support! https://www.amazon.
SPONSOR AN ENTIRE HOLIDAY CARE PACKAGE– $50.00. Donate online with a credit card using our qgiv at the top right corner of this web site or send a check to: Our Promise to Nicholas Foundation, PO Box 10106, Bedford, NH 03110. Click on this link to our qgive page for the holiday care packages. The link is here: https://secure.qgiv.com/
These photos are from 2021 Nicholas Giving Tree Project
BDSRA Family Conference July 7-10, 2022, Cleveland, Ohio
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 and schedules to volunteer with Our Promise to Nicholas Foundation and give over 110% effort the entire conference. They bring so much love, knowledge, peace, and grace to these families. We are lucky to have them join me each year!
This childcare is a gift for the parents at this conference. They can take time to learn about the disease, meet other families, meet clinicians and researchers, learn about the services and equipment they may need in the future and clinical trials or treatments their child may be eligible for to help slow the disease.
Due to the nationwide nursing shortage the BDSRA and Morgan DeBoth hired a company called Kiddie Corp. This is an organization that provides childcare for families at events. The staff from this company at our conference consisted mainly of women in Ohio who had taken care of children, adults, or family’s members with special needs.
Over the two days of childcare, we had around 27-30 affected children signed up. I am sure we did not have them all at once but there were times during the day that our room was hoping, bopping and very busy. It is challenging caring for the mobile unstable active children, keeping them safe and engaging the non-active children. We all worked together and made it work. I could see lot of smiles and hear lots of laughter.
I want to give a shout out to the on-site manager of Kiddie Corp Nicole Long. She was incredibly helpful checking the families in and out of our care, keeping all the paperwork, signatures up to date as well as giving the Kiddie Corp staff direction throughout the days.
We met many new families and welcoming our past little friends. The girls and I shed many tears missing the children that have passed since our last conference in 2019.
Thank you to Ethan Reason Foundation for your sponsorship toward the special music class and therapy dog session. Thank you to Regenxbio Pharmaceutical Company for your contributing sponsorship toward the childcare this year.
Thank you to our sponsor, donors, volunteers, and supporters of Our Promise to Nicholas Foundation. Without your past support we would not have been able to sponsor the care at this conference. We are grateful for your support.
13th Year- 25,000 Raised by Egg Hunt for Our Promise to Nicholas Foundation in 2022!
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.
We were blessed with a crowd of 800 participants (event goers, exhibitors, and volunteers!). The different set up this year made the event even more exciting! Families hopped along the bunny footprints path in a one-way direction through the NH Sportsplex to the Egg Hunt entrance and photos with the Easter Bunny. This special year we had over 15,000 donated eggs filled with candy and prizes for the children. Twenty -four Sponsorship tables were along the bunny path across two indoor soccer fields. Families stopped at each sponsorship table to talk with the exhibitor, play games and get more eggs! Along the maze journey, families listened to music, play kids’ games, ran through an obstacle course, took photos with our many cute mascots, and enjoy a bunny hat craft. The Party Palace princess and pirates joined us this year for more special photos and crafts!
Through the support of corporate sponsorships, local businesses, and community volunteers, this 2022 event was a big success for Our Promise to Nicholas Foundation. Thank you to NH Sportsplex, Executive Health and Sports Center, Granite State Gastrointestinal Consultants, Catholic Medical Center, Bedford Ambulatory Surgical Center, BASC Imaging, Derry Medical Center of Bedford, Derry Imaging, Eliott Hospital, Eastern Bank, Rothwangl Dental Care, London Family Orthodontics and Spectrum Marketing.
Many thanks for volunteered support toward this event from: my family (parents, siblings, aunts, uncles, and cousins) the OPTN Board members, Southern NH National Charity League, Bedford High School Students, St. Elizabeth Setion Parish, Girl Scouts Troup Number 51000, Boy Scouts Troop Number 6, Bedford Martial Arts Academy, Girl Scouts of Green and White Mountains, Headshots Photography, Kelly Family, BHS Key Club, Obrieter Family, Pozzi Family, BHS Cheerleading Team (Mascots), Ross Lurgio Middle School-CBY, Stensgaard Family, White Family, Becca DaCosta, Meghan Gleason, Goucher Family, Isabelle Grenier, Minha and Grace Khan, Pray Family, Smith Family, Armitstead/Aguiar Family, Gayle Hinks and Jo Smith Headshots Photography. Eggs donated by Family in Transition Organization. Egg Hunt candy donor is anonymous. Thank you to Lindt Chocolate for your donation of chocolate truffles given to all event goers!
Our goal for 2022 is to continue to raise funds to support expert nursing care for children suffering from Batten Disease, collaborate with clinicians at MGH to support a clinic for children with batten disease and rare diseases and support further research and science for this rare disease.
What is next in 2022?
BDSRA Family Support Conference- July 8-10, 2022. Our Promise to Nicholas Foundation supports nursing care.
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 attending/volunteering at the conference. With the hired LPN/CNA’s they will assist in the care for these children with Batten Disease. The parents or caregivers can take the time to learn more about the disease, meet experts in the field, receive support from other families and learn how to best care for their children. We will be doing many crafts and making art keep sakes for the families to take home and giving lots of love and support to these kiddos!. Look for photos of these beautiful children and their families this summer.
NCL Translational Scientific Conference November 3 & 4, 2022 in Chicago.
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, Tracy Van Houtan (Noah’s Hope/Bridget Hope), Karen Kahn / Carol Schwimmer (Fore Batten Foundation) and The Lehrman Family. This intimate Batten Disease conference/workshop is essential to foster good respectful interactions and discussion between these scientist, researchers, clinicians, and pharmaceutical companies. In the past this conference was called a “workshop” allowing an open question and discussion session after a panel of 2-3 speakers spoke on a specific topic of research or findings in their lab. This brings great safe positive collaboration, open discussion and sharing information between all attendees. Each conference we are grateful to see this valuable communication between science and research and firsthand seeing this specific rare disease advancing at a much faster pace for all NCL’s then 10 years ago. A cure for Batten disease does not seem so far way. The covid pandemic may have slowed things down in this rare disease circle but we are excited to get back up running. The last conference was in 2019 hosted 36 speakers and 75 attendees. Stay tuned for more information and sign up/ sponsorship for this conference is coming soon.
Nicholas Giving Tree Project 2022
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 holiday that can be stressful caring for their critically ill children. These small shoe box size care packages included items such as new bed sheets, neck pillows, cozy new pajamas, toiletries, gift cards (to purchase over the counter medications such as Tylenol/Advil or what they need to care for their child), holiday cards, holiday candy and lots of love. Holiday care packages will be mailed out on November 28, 2022. If you would like to contribute toward our holiday care package project in anyway – please contact me at firstname.lastname@example.org. Thank you.
The Our Promise to Nicholas INDOOR MAZE to the Egg Hunt and Easter Bunny!
DATE: Saturday April 16, 2022
WHERE: NH Sportsplex Building #2, 68 Technology Drive, Bedford, NH
TIME: 8:30AM- 12:00PM
Doors open at 8:30AM and ends at Noon.
- There will be no raffle or silent auction at the egg hunt event on Saturday April 16.
- Auction winners can be pick up baskets and winnings on Saturday April 16 at the NH Sportsplex- 68 Technology Drive, Bedford, NH between 8:30AM- 12:00PM- Back entrance of building #2 (first building).
- If you cannot pick up your winnings on Saturday April 16 at the NH Sportplex – all items can be picked up on Monday April 18 at Eastern Bank – 1 Atwood Lane, Beford, NH
- No Easter Baskets, Flower arrangements, wreaths or big items can be shipped.
- ** You MUST show ID to pick up your won items.
On-line Ticket $8.00 per person
On- line Ticket $28.00 per family (3-7 members)
On-line ticket $56.00 per family (8 members)
Discount ticket sales on-line end on Friday April 15 at 6PM. Then tickets are only sold at the door.
$10.00 per person at the door. No discounts.
We accept Cash, Check, or credit card
NOTE: Everyone in the family (or party) needs to have a “ticket” (Adults and Walking Children)
We are happy to bring some joy to the families in our community and host this indoor egg hunt fundraiser for our charity. There will be 10,000- 15,000 plastic-colored eggs filled with candy and prizes on the fields for the children to gather in a controlled environment. Each family will receive a ticket with a specific time to enter the egg gathering part of the event. This is for safety and allows for families to take pictures and enjoy the egg gathering. Your hand will also be stamped at the entrance.
THE EVENT: Your family will hop along the bunny footprints path in a one-way direction through the NH Sportsplex to the Egg Hunt and photos with the Easter Bunny. There will be plenty of eggs for everyone! Sponsorship tables will be along the bunny path across two indoor soccer fields. Families can stop at each sponsorship table to find a “hidden egg”. As you hop through the maze, your family will be able to listen to music, play a few kids’ games, partake in an obstacle course, take photos with our cute mascots (Bouncing Tiger, Mrs. Duck, Brown Puppy, Chicken, Bear, Fox, Kit the Cat) and enjoy a bunny craft. The Party Palace Princess and Pirates will be attending!
THE EGG HUNT When you arrive at the entrance of the event. We will give you an “egg hunt time” ticket. This will give you the time to enter the egg hunt field. We no longer have a big group dash for eggs. Children were getting injured, and some were not getting any eggs. This is a controlled environment. Enjoy your time, take photos with family and the Easter Bunny! Once you pick your eggs- exit the back of the egg field and you can return to the maze portion of the event. We ask you only participate in the egg hunt portion of the event once so we will have enough eggs for all children. We will have between 10,000-15,000 eggs on the field filled with candy and prizes!
COVID 19 PERCAUTIONS: Face masks and hand sanitizer will be available at the entrance of our event. There will not be a mask mandate and we respect everyone’s choice to wear one or not.
ON-LINE AUCTION- EASTER BASKETS & MORE! This online auction will be OPEN for bids starting April 4, 2022 at 5PM and closed on Friday April 15, 2022 at 5PM. Baskets will be available for pick up at the Egg Hunt Event on Saturday April 16 between 8:30am-12:00PM at the NH Sportsplex – 68 Technology Drive, Bedford, NH. If you are unable to pick up the basket at the event, your basket will be located at Eastern Bank, 1 Atwood Lane, Bedford, NH 03110. Please bring a photo ID to claim your basket.
Here is the link to the Auction: https://www.
PARKING: Parking is free but NHSportsplex lot fills fast. There will be additional free parking at 10 Iron Horse Drive (this is off South River Road). This is down the street but also next door to the NH Sportsplex. You will be able to walk through the parking lot to the back of the NH Sportsplex. This is down the street but also next door to the NH Sportsplex. You will be able to walk through the parking lot to the back of the NH Sportsplex. We will have signs to direct your way.
SPEEDY ARRIVAL TIME SPOTS – Please use this link to sign up for the time frame you and your family will be attending the event. Once at the event you may stay as long as you desire. We are trying to spread out the times of all event goers rather than everyone shows up at the same time. Thank you for your patience. https://www.
TICKETS: Click here for your tickets to the event: https://secure.qgiv.
SPONSORSHIP Click here and scroll down page https://secure.qgiv.com/
Please contact Heather for more information about sponsorship. heatherdainiak@
IMPORTANT INFORMATION About -Extra Event Parking:
All parking is free. There will be parking at the NH Sportsplex- 68 Technology Drive, but the lot fills up quickly. We do have extra parking with shuttle service by the Bedford Martial Arts Academy. This organization can transport you and your family to and from the NH Sportsplex. The transportation will start at 7:15AM and ends at 12:30PM.
10 Iron Horse Drive- next door to the NH Sportsplex. -You can walk to the event building at the NH Sportsplex. It is a short distance or take a shuttle service from this location.
1 Commerce Drive– Girl Scouts of Green and White Mountains- this is located across the street from Irving Gas Station/ Circle K gas station on Route 3 / South River Road.
Who needs to buy a ticket? Adults & Children (that are able to walk) in a family/ or party will each need a ticket purchased (shown on your receipt) to enter this event.
We do not mail tickets- Once you purchase a “ticket” online- you will receive an emailed receipt. Print this out and this is your “TICKET”. We do not mail tickets. You will also be listed on our register at the event- that you are paid.
Questions/ Concerns: contact Heather at email: ourpromisetonicholasfou
12th Annual Egg Hunt Festival
Saturday April 16, 2022
NH Sportsplex- 68 Technology Drive, Bedford, NH
8:30AM- 12:00 PM
Save the Date.
Sponsorship opportunities and tickets will be available soon.
Please check back for more details about our upcoming event!
2021 Nicholas Giving Tree Project – Holiday Care Packages to children with Batten Disease.
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. These care packages included items such as new bed sheets, neck pillows, cozy pajamas, toiletries, gift cards and lots of love. This year we had over 75 individual donors from all over contribute to our holiday care packages. We are thankful to continue to have so much support toward this project, with donations from NH, MA, VT, CT, AZ, MD, PA, SC, NC, WV and FL. We also received many beautiful, handcrafted items to go into the packages such as fleece hats, pillowcases, quilts, ornaments, holiday cards and pictures. We thank Eastern Bank, in Bedford New Hampshire, who helped as always, hosting a holiday giving tree in their front lobby to collect gifts. Thank you to Southern NH National Charity League (Mother’s and Daughter Volunteer Organization) for their donations and support.
🎄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 Batten Disease it does give these families a small amount of joy at a time of stress in their lives.
🎄ITEMS IN HOIDAY CARE PACKAGES- In the care packages are items the families would use to take care of their child anyway. With your support we have been sending out holiday care packages for the past 7 years. This year in addition to toiletry care items and over the counter medications- to care for their children we are including of pajamas (and a neck pillow if we can fit it in the box) OR a set of new bed sheets.
GIFT CARDS- Most wanted by the families are Gift cards: Amazon, Target, Walmart CVS, Walgreens, Rite -Aid, Mobil gas, Exxon gas. Any amount is appreciated.
🎄 SPONSOR AN ENTIRE HOLIDAY CARE PACKAGE- $50.00. Donate online with a credit card using our qgiv at the top right corner of this web site or send a check to: Our Promise to Nicholas Foundation, PO Box 10106, Bedford, NH 03110. Click on this link to our qgive page for the holiday care packages: https://secure.qgiv.com/for/optnf/event/820534/
🎄HOW TO DONATE? Items can be ordered on Amazon and shipped to my house directly.
Use this Amazon Link: https://www.amazon.com/hz/wishlist/ls/3VVDCPBXC7GBG?ref_=wl_share
DEADLINE FOR DONATIONS- Monday November 22, 2021
🎄All packages will be sent out on Monday November 29, 2021
Bunny & Friends Parade Thru Event
Sunday March 28, 2021
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 SHINED BRIGHT! Thank you to my family and friends for the tremendous support toward this event. Thank you to our many local businesses who continue to sponsor our events. Thank you to the families who attended in their cars- we gave out over 250 “Easter in a Bag”- filled with candy filled eggs, Easter Candy, and marketing materials from sponsorships. The event was awesome, and we do feel the love from our community! A million thank YOU’S to you!
Extra candy from this event was donated to The Salvation Army Kids Cafe in Manchester, NH. They serve meals to 80-130 kids every night in the city.
SAVE THE DATE:
Our Promise to Nicholas Foundation
12th Annual Egg Hunt Festival – Saturday April 16, 2022
Details and Sponsorship Opportunities coming soon!
Dear Friends of Nicholas,
Sadly, we are unable to host the Annual Easter Egg Hunt Festival again this year due to COVID-19 restrictions in unprecedented times.
We are happy to announce:
The Bunny & Friends Parade Thru Event
DATE: Sunday March 28, 2021
PLACE: NH Sportsplex, 68 Technology Drive, Building #1, Bedford, NH.
TIME: 12:00PM- 3:00PM
Cost: 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 community event children and families can safely wave from their car to the Easter Bunny & friends. Each family/family will receive a Easter in a Bag.
All participants MUST register for a time at the event.
Click on this link to register. Please include the number of children in your party.
This is to ensure we have proper plans in place to keep traffic flowing
SPONSORSHIP OPPORTUNITIES: Easter in a Bag- We will be passing out “Easter in A Bag” to each child/family that passes our waving mascots. Each bag will contain twelve (10) candy/prize filled eggs. If your business is interested in donating toward eggs a monetary donation of $50.00 will go toward a purchase of 125 plastic eggs filled candy. Please send a check payable to Our Promise to Nicholas Foundation and send to PO Box 10106, Bedford, NH 03110.
Silent Auction- We are hosting a silent auction online through 32 Auctions.com. It will be live March 28- April 1. If you would like to contribute to this auction, please contact Heather at email@example.com The deadline is March 22, 2021. All money raised by this auction will go toward science, research, nursing care and family support for children with Batten Disease. Web site for this live online auction is https://www.32auctions.com/OPTNEaster2021
We support businesses: This year we support you! By making a small donation toward our eggs and candy we will post your business name or logo on a flyer that will be placed in the bag. Feel free to send marketing material you would like us to add to our Easter in a bag. The deadline is March 15, 2021. Must be mailed to OPTN, PO Box 10106, Bedford, NH 03110
General Donation- To donate by credit card please click on this link. https://secure.qgiv.com/for/optnf/mobile/donations/
Thank you for your support. Please save the date for the Next Years Egg Hunt Festival April 16, 2022.
Hope you and your families have stayed well.
Happy New Year 2021!
2020 Nicholas Giving Tree Project
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 few to Canada. This year we were blessed with 75 donors to support us to send out holiday care packages to 53 children. Each year we try to change the contents the holiday care packages. This year every child received a new pair of bed sheets as well as other items the families use to care for their child such as over the counter medications, travel size toiletry items to use for hospital stays, holiday candy, handcrafted pillowcases, home-made holiday cards and a few gift cards for the families to purchase what they need. Children with medical complexities are a financial burden to families. These holiday care packages do bring a small amount of joy to the children and their families.
We are grateful for the tremendous amount of donations we received from friends in New Hampshire, Massachusetts, Connecticut, Vermont, Maine, New York, and New Jersey. We also received donations from donors in Oregon, Arizona, West Virginia, Illinois, Connecticut and Floridia. Thank you to Pam W, her daughter Milena, the NH Bedford, NH Girls Scouts and ESC swim team teens who hand crafted fleece hats, pillowcases and holiday cards. Thank you to Lynne V, her crafting friends, and Rothwangle Dental Care for the support of hand-crafted pillowcases. Thank you to Ann K. and her family for homemade cards. Thank you to Mothers and Daughter’s Southern New Hampshire National Charity League for the very generous donations, hand-made ornaments, and cards. Thank you to Marie R and her daughter Rosie R. for donation of beautiful calligraphy names of the children on envelopes! Thank you to Maria S. for the beautiful holiday bells.
Thank you to everyone near and far for your support toward the 2020 Nicholas Giving Tree Project- Holiday Care Packages for Children with Batten Disease.
Dear Friends of Our Promise to Nicholas Foundation,
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 to ensure the safety of all people at our event. We are not sure how quickly this is going to spread, and we want everyone to remain well.
Our charity focus is science, research, nursing care and family support for families afflicted with this disease. Please pray for the medically fragile children with Batten Disease going through this current worldwide crisis which will have a tremendous impact on them medically.
SAVE THE DATE for Saturday April 16, 2022!
We are working on a 2022 Easter Bunny & Friends Drive – By Event – Date and Place TBD
The Nicholas Giving Tree Project 2019
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 very stressful. Donations came from NH, MA, CT, VT, FL, AZ, MI, OR, MN and ILL. Special thank you to Ethan’s Reason Foundation and Fore Batten Foundation. Many anonymous donations were dropped off at Eastern Bank in Bedford, New Hampshire. I think we had over 100 donors contributing to these packages! Thank you for your kindness toward these children and their families. You do make a difference in many lives! Take a look a the amazing and sweet photos the parents of the children sent to us.
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
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 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.