2024

Future Funding:

Fall 2024 – OPTN together with family foundations will be hosting our 7th Translational Scientific Conference for the Managment of NCL’s will be hosted in Chicago, ILL- Check back next year but we will be seeking sponsorships for this conference.

2023

January 2023 $5000 to BDSRA Plans to host 4 Virtual “on-line” parties for the families to get together. Families would sign up for the party and a book and craft would be sent to them in the mail. On the date of the “party” a BDSRA staff member would read the children’s book and together lead the craft with the children and families. This sponsorship covers the cost of the book, craft, and mailing. 

May 2023 $10,000 for the July BDSRA Family Support Conference BDSRA -OPTN sponsored a childcare agency (not nurses) to provide support for the affected children with batten disease in the childcare room at the conference in Denton, Texas. Due to the shortage of nurses nationwide we were unable to hire nurses to care for the children. The hired agency provided 20+ preschool & special need teachers, child caretaker and a staff manager to lead this group of workers. The agency that was hired was called Corporate Kids Agency. Part of this sponsorship funding went toward a stipend to allow families to attend the conference who financially were not able to without this support.  

July 2022 $4000 Meghan Kelley, RN to take leadership role as nurse at the BDSRA family conference in Denton, TX. This sponsorship paid for her time, travel, hotel and food. She used this sponsorship to bring her 3 professional sisters who volunteered their time to care for children affected childcare room for two days. 

2022

May 2022 $13000 – Massachusetts General Hospital– Dr. Florian Eichler, neurologist and from the Center for Rare Neurological Diseases works with Dr Amanda Nagy. She is developing a natural history and trial readiness for 2 rare neurological disorders that show developmental delay, seizures, and regression in childhood similar to Batten’s disease. One disorder is related to gene defects in TBL1XR1, a member of the WD40 repeat-containing gene family and required for transcriptional activation by a variety of transcription factors. The other disorder is due to a gene defect in the nucleolar transcription factor UBTF. The funding from Our Promise to Nicholas Foundation will help protect Dr Nagy’s research time and support a clinical research coordinator.

May 2022 $10,000 The Westin Chicago Lombard Hotel, Chicago, ILL- for the 7th Translational Scientific Conference for the management of NCL’s. This is the deposit for the November 2022 conference.

July 2022- $10,000 BDSRA OPTN Sponsored the BDSRA Emergency Relief Fund. This program assists eligible individuals with the cost of unexpected or emergency non-medical expenses that cannot be afforded without short-term assistance. Examples include the cost of repair for a car or major appliances, unexpected utility costs, or cell phone bills that cannot be afforded due to lost wages from time off related to illness or care of ill family, or assistance funeral expenses.

July 2022 $3000 BDSRA Family Support Conference BDSRA -OPTN sponsored a childcare agency (not nurses) to provide support for the affected children with batten disease in the childcare room at the conference in Detroit, Michigan. Due to the shortage of nurses nationwide we were unable to hire nurses to care for the children. The hired agency provided 20+ preschool & special need teachers, child caretaker and a staff manager to lead this group of workers. The agency that was hired was called Kiddie Corporation.

July 2022 $6000 The Westin Chicago Lombard Hotel, Chicago, ILL Second deposit for NCL conference in November 2022

November 2022 $7567.000 The Westin Chicago Lombard Hotel Chicago-6th Translational Research Conference for the Management of NCL’s – This was the expense covered the expenses for the 2-day conference room rental, AV equipment, speaker’s hotel accommodations and food for attendees.

November 2022 $5200 Scientific Conference Speakers Sponsorship amount covered the expenses for 13 scientist who were speakers at this conference: travel, hotel accommodations and food.

December 2022 $10,000 BDSRA– OPTN Sponsored the BDSRA Emergency Relief Fund. This program assists eligible individuals with the cost of unexpected or emergency non-medical expenses that cannot be afforded without short-term assistance. Examples include the cost of repair for a car or major appliances, unexpected utility costs, or cell phone bills that cannot be afforded due to lost wages from time off related to illness or care of ill family, or assistance funeral expenses.

2021

Please note: Unfortunately, this year the pandemic continued and many of the labs in NCL continued to be closed or were limited in their ability to work. We were only able to host a “Drive by Easter Bunny” Event which was not our usual Egg Hunt Fundraiser and we raised little money toward Batten Disease.

May 2021 $10,000 – BDSRA OPTN Sponsored the BDSRA Emergency Relief Fund. This program assists eligible individuals with the cost of unexpected or emergency non-medical expenses that cannot be afforded without short-term assistance. Examples include the cost of repair for a car or major appliances, unexpected utility costs, or cell phone bills that cannot be afforded due to lost wages from time off related to illness or care of ill family, or assistance funeral expenses.

May 2021 $1000 BDSRA– Hosted Virtual “on-line” parties for the families to get together. Families would sign up for the party.  A book and craft would be mailed to the family.  On the date of the “party” a BDSRA staff member read the children’s book and together lead the craft with the children and families. This was a trial run for the BDSRA to see if Batten Families would join- it was a success and a lot of families joined.  

May 2021- $2,500 sponsorship to Dr. Jon Cooper– NCL2021 The 17th International Congress on Neuronal Ceroid Lipofuscinoses was held in St Louis, Missouri, USA, organized by Prof Jon Cooper. Originally planned for October 2020 it was held in October 2021 as a hybrid meeting due to the COVI-19 pandemic.

November 2021 $2,500 BDSRA– Hosted Virtual “on-line” parties for the families to get together. Families would sign up for the party and a book and craft would be sent to them. One the date of the “party” a BDSRA staff member would read the children’s book and together lead the craft with the children and families. 

2020 

Please note: The covid 19 pandemic started in the USA in February 2020. Our Egg Hunt Fundraiser April and the BDSRA family conference in July were both cancelled. Many of the labs in the US working on NCL were on hold until the pandemic passed.

May 2020- $10,000 to BDSRA – OPTN Sponsored the BDSRA Emergency Relief Fund. This program assists eligible individuals with the cost of unexpected or emergency non-medical expenses that cannot be afforded without short-term assistance. Examples include the cost of repair for a car or major appliances, unexpected utility costs, or cell phone bills that cannot be afforded due to lost wages from time off related to illness or care of ill family, or assistance funeral expenses.

December $1,500 Nicholas Giving Tree Holiday Care Packages for Children with Batten Disease. 50+ holiday care packages were sent to children with Batten Disease in the US containing items the family would use to care for their child (over the counter medications- Tylenol, Advil), toiletry items, new pj’s, new sheets, holiday cards and gift cards so the families can purchase what they need. We do get a lot of donations for this project so the sponsorship goes toward shipping or additional items for the care packages.

2019

February 2019- $74,985 University of Rochester– 3rd year Funding of the Biorepository Database at MGH/ University Rochester. Dr. Jonathan Mink, Dr. Kathy Sims, Dr. Susan Cottman.

May 2019 $10,000 to BDSRA OPTN Sponsored the BDSRA Emergency Relief Fund. This program assists eligible individuals with the cost of unexpected or emergency non-medical expenses that cannot be afforded without short-term assistance. Examples include the cost of repair for a car or major appliances, unexpected utility costs, or cell phone bills that cannot be afforded due to lost wages from time off related to illness or care of ill family, or assistance funeral expenses.

June 2019 $1000 to BDSRA– OPTN sponsored to support an update of the Batten Disease memorial wall of children that passed away from Batten Disease. This “memorial wall” has been displayed at every BDSRA family summer conference but has become too large and expensive to transport to each conference each year. The new updated wall is a digital wall. It contains information about each child who passed from Batten Disease and families can add photos and information to their “page” on this wall about their loved one. 

July 2019- $4000 to BDSRA -OPTN sponsored nursing care to provide support for the affected children with batten disease in the childcare room at the conference in Denver, Colorado.

July 2019 $3,500 to BDSRA OPTN sponsored a stipend for 5 families to attend the BDSRA family conference in Denver, Colorado.

August 2019 $43,700 to Massachusetts General Hospital – Funding sponsored to hire a NCL Research Coordinator to oversee the MGH Biorepository and natural history database for children with Batten Disease.

November 2019- $39,694 to Westin Lombard Chicago Hotel– 5th Translational Research Conference for the Management of NCL’s – This was the expense covered the expenses for the 2-day conference room rental, AV equipment and food for attendee.

November 2019 $5200 Sponsorship amount covered the expenses for 12 scientist who were speakers at this conference: travel, hotel accommodations and food.

2018

July 2018 $8000 to BDSRA – OPTN sponsored nursing care to provide support for the affected children with batten disease in the childcare room at the conference in Nashville, Tennessee

July 2018 $3,500 to BDSRA – OPTN sponsored a stipend for a family to attend the BDSRA family conference in Nashville, Tennessee

2017

July 2017 $7000 to BDSRA- OPTN sponsored nursing care to provide support for the affected children with batten disease in the childcare room at the conference in Pittsburg, Pennsylvania.

July 2017 $800 to BDSRA- OPTN sponsored a stipend for a family to attend the BDSRA family conference in Pittsburg, Pennsylvania.

November 2017 $4,307 4th Translational Scientific Conference for the management of NCL’s- Bethesda Marriott Hotel, Bethesda, Maryland. Expenses for conference room rentals, AV equipment’s and meals for participants

November 2017 $7,400 4th Translational Scientific Conference for the management of NCLs- Bethesda Marriott Hotel, Bethesda MD. Sponsorship amount covered the expenses for 13 scientist who were speakers at this conference: travel, hotel accommodations and food.

2016

March 2016– $12,000 was awarded to sponsor the 3rd International Scientific Workshop through the sister organization of OPTN, the Batten Research Alliance (BRA) in Bethesda, Maryland. This two-day conference fosters a discussion by leaders in the field of Batten Disease. More than two dozen scientists will collaborate and share their findings in the latest hope for evolving fields providing direction in research, creating new ideas and partnerships in a forum that otherwise would be impossible to reproduce. The outcome of the conference includes requests for proposals (RFPs). Proposals are then independently reviewed and scored so that an educated determination can be made to financially support the best and most promising research proposal.

OPTN is looking forward to supporting exciting research into 2016.

March 2016- $24, 230 Marriott Bethesda, Maryland. 3rd Translational Scientific Conference for the management of NCLs. OPTN is hosting the 3rd bi-annual Batten Disease Workshop in Bethesda, Maryland on March 30th, 2016. This three-day workshop is the combined effort of 10 family foundations coming together to review findings from past research projects and latest findings. Scientists will be encouraged to work in teams to come up with innovative research proposals. Proposals will then be accepted through the BRA to determine possible financial awards, should their application meet the high expectations for promising outcomes. OPTN will receive the findings from the independent reviewers and will look to offer financial support.

July 2016 $7000 BDSRA -OPTN will continue to attend the BDSRA’s Annual Conference in 2016 held this year in St. Louis, Missouri. We will continue to offer our support in the nursing care and respite of the individuals who attend the conference.

August 2016 $74,895 University of Rochester  and $24,898 Massachusetts General Hospital OPTN has committed to continue to support the Natural History and Biorepository database over the next two years offering $100,000 for each year in 2016 and 2017. Dr. Jonathan Mink from the University of Rochester (Biorepository) and Dr. Katherine Sims of Harvard University and Massachusetts General Hospital (Natural History Data Base) are the recipients of this gift. Giving scientists access to demographics, dates regarding treatment and tissue samples is an important step in the search for a cure. The ongoing registry and biorepository will provide valuable information on natural history and the possibility to correlate changes in cells, their genes and proteins with clinical outcomes. This type of information will make it possible to compare the outcomes of future treatment strategies with what we would expect from the natural history of the disease. It is the first of its kind for Batten Disease in the United States.

2015

March 2015 – $24. 888 to Massachusetts General Hospital and $74,985 was awarded to University of Rochester.  This sponsorship was in support of a Natural History and Biorepository Database for Infantile and Late Infantile Batten Disease. Dr. Jonathan Mink from the University of Rochester and Dr. Katherine Sims of Harvard University and Massachusetts General Hospital are the recipients of this gift. The registry and biorepository will provide valuable information on the natural history of CLN1 and CLN2 and the possibility to correlate changes in cells, their genes, and proteins with clinical outcomes. This type of information will make it possible to compare the outcomes of future treatment strategies with what we would expect from the natural history of the disease. OPTN has promised an additional $100,000 each year for 2016 and 2017 to fulfill the entirety of the project of $300,000 with the hope that new revenue streams will support this project past 2017.

April 2015 – $24,635 Dr. Michelle Hastings from the Rosalind Franklin University School of Medicine and Science, Chicago and Dr. Jill Weimer from Sanford Research Center, South Dakota. Their study is called Stop Codon Read-Through and Nonsense Suppression for the Treatment of Infantile and Late Infantile Batten Disease. The gene defects in infantile and late infantile Batten Disease result in unstable proteins. A new strategy will be tried to produce more stable protein products from the mutated genes by manipulating the genes with small drugs that cause the ribosomes (where genes are expressed into proteins) to make a more stable protein. These drugs work by bypassing the mutation and allowing the ribosomes to read through (or around) the defect. These dollars are to support an exciting ‘proof of concept,’ focusing on stabilizing the mutated proteins that cause Batten Disease. If the proof of concept is achieved, OPTN would support future dollars to allow these scientists to further their research.

April 2015 $1200 Suzanne Bergeron Egg Hunt Fundraiser Leader. She took leadership roll in hosting our 7th year hosting the OPTN Egg Hunt.

June 2015- $6,300 BDSRA was awarded to support expert nursing care at the Batten Disease Support Research Association’s (BDSRA) Annual Conference held in Chicago. Over 40 children with Batten Disease in need of expert medical attention were given care and support during this 3 day conference. This allowed their families to attend the support meetings and conferences as well as get some respite knowing their children were in good hands. OPTN was proud to offer our skills and expertise to these loving children. Four volunteers of OPTN, who financed their own travel, attended the conference to support the nurses and provide individual one-on-one companion care.

June 2015 $1210 Meghan Kelley, RN took leadership role as nurse at the BDSRA family conference in Denton, TX. This sponsorship paid for her time, travel, hotel, and food. She used this sponsorship to bring 1 professional sister who volunteered their time to care for children affected childcare room for two days.

December 2015 – $2,000 was awarded to The Nicholas Giving Tree Project. Sponsorship was given to 22 families who have children with various types of Batten Disease all over the United States. With the support of 40 donors OPTN sponsored personal care items, over-the-counter medications, clothes and toys. This sponsorship assisted in mailing the packages and filling the care packages with items that were not donated.

2014

April 2014 $13,000 toward 13 speakers Scientific at the 2nd Translational Scientific conference for CLN2. Sponsorship toward speakers travel expenses, hotel, and meals at the conference.

April 2014 $2000– Marriot Hotel Bethesda, Maryland. 2nd Translational Scientific Conference for CLN2. Expenses toward conference room rental, AV equipment, hotel accommodations for speakers and meals for conference.

May 2014 $1900– Charm Lab- designer of Battenresearch.org. This was a web site portal for scientists to submit their new NCL research for funding. The research would be peer reviewed and those with the highest score would be awarded funding.

2013

Funding information coming here soon

2012

Funding information coming here soon

2011

January 2011 $1887.00 Marriott Hotel- Bethesda, Maryland- OPTN hosted the 1st Translational Scientific Conference for CLN2. Expenses for conference room rental, AV equipment, food for speakers.

August 2011 $26,800 University of Iowa- James C. Geoghegan PhD
Postdoctoral Fellowship (Beverly Davidson, PhD) | University of Iowa
The molecular basis for AAV-targeting of TPP1 deficient brains | $26,800
Founding provided by Our Promise to Nicholas Foundation

December 2011 $5000 BDSRA- Donation to be used toward CLN2 research.

2010

August 2010 $26,800 University of Iowa- James C. Geoghegan PhD
Postdoctoral Fellowship (Beverly Davidson, PhD) | University of Iowa
The molecular basis for AAV-targeting of TPP1 deficient brains | $26,800
Founding provided by Our Promise to Nicholas Foundation

August 2010- $20,000 to BDSRA This sponsorship is to go to support families going through the 2010 CLN2 Gene Therapy Trial at the Weill Cornell Medical Center in Manhattan, NY. This sponsorship is to be used as a stipend toward their hotel, travel, and food expenses.

September 2010- $5000 Web site:  Our Promise to Nicholas Foundation Web site Update/Design

2009 

 Our Promise to Nicholas Foundation was established April 2009

This year we had over 35 fundraisers- big and small. We are grateful for our family, friends and community who gave us the gift of Our Promise to Nicholas Foundation!