Greetings!
We hope you and your family are well! We wanted to share a few updates with you about our mission for CLN2 Batten disease.
With generous donations from you, our sponsors, and supporters, we have been able to fund over $2 million to scientists and research initiatives since 2009. Our projects led to meaningful discoveries in the Batten community. Please consider a donation today.
A Fifth Season
Last November, we hosted the 10th year of celebrating our children’s lives and continued fundraising for Batten disease at A Fifth Season. While it has been such a fun event, we have started working on a different type of event for 2023. Noah’s Hope-Hope 4 Bridget’s mission remains steadfast in funding early detection methods, innovative research to advance treatments, and to ultimately find a cure for CLN2 Batten disease. We will share a save-the-date for A Fifth Season early in 2023.
Project Updates
We are pleased to share that in September, A novel porcine model of CLN2 disease that recapitulates patient phenotypes publication was released. This project was one of our largest projects that we expect will help treatment development for CLN2 disease.
On November 3-4, we sponsored & attended the 7th TranslationalResearch Conference for the Management of NCLs (Batten disease). This meeting began in 2010 and was focused entirely on treatment approaches for Batten disease CLN1 and CLN2. This conference was started by several “family foundations”, including Noah’s Hope-Hope 4 Bridget. This year the program evolved to include all forms of Batten and provided a forum to spark critical ideas, conversations, and further research for this devastating disease with academia, the biotech industry, and advocacy groups. During the conference, we heard updates from NHH4B projects:
- Heather Adams, Ph.D.; University of Rochester, “Characterizing sleep dysfunction in individuals with NCL Disorders.”
- Elizabeth Berry-Kravis, MD, Ph.D.; Rush University Medical Center, “Challenges to Translation of Disease-Targeted Therapies in Rare Neurogenetic Diseases”
- Jonathan Cooper, Ph.D.; Washington University in St. Louis,“Defining and treating disease outside the brain”
Treatment, not a cure
In 2017, an enzyme replacement therapy (ERT) for CLN2 Batten disease, Brineura was approved. While grateful for this treatment, Noah’s Hope – Hope 4 Bridget continues searching for additional treatments and a CURE for CLN2 Batten disease. We are always exploring new funding opportunities and research projects.
Our inspiration
We keep our children, Noah, Bridget, and Laine close with the work we do for other children around the world who are living with Batten disease. On behalf of our children, thank you for your kind donation and continued support to Noah’s Hope-Hope 4 Bridget, a non-profit 501©(3) organization – Federal Tax ID #47-2609776.
Yours in hope,
Jen & Tracy VanHoutan (Noah & Laine’s parents) NoahsHope.com
Sara & David Kennicott (Bridget’s parents) Hope4Bridget.com
Donate online or checks may be mailed to:
Noah’s Hope – Hope 4 Bridget
P.O. Box 36
Barrington, IL 60010
Noah’s Hope-Hope 4 Bridget is a 501(c)(3) registered charity supporting Batten disease research and recognized by the IRS.