Batten disease is a ruthless, childhood condition that has stolen our children’s livelihood and then, lives.
We have devastatingly lost Noah VanHoutan,Bridget Kennicott,Ethan Gahlbeck and recently, Laine VanHoutan all between the young ages of 10-12 to this horrific disease.
Our children developed normally as toddlers; walking, talking, and laughing. Unfortunately, they soon experienced on-going seizures and loss of muscle control including their ability to speak, walk, and feed themselves. Currently, there is no cure for this fatal childhood disease.
We are planning on hosting our 10th Annual fundraiser in honor of all four children this year. The event format will depend on the CDC Covid-19 guidelines. Event updates will be in future emails.
Save the Date: A Fifth Season is Saturday, November 13th, 6:00pm at the Marriott Oak Brook – 1401 W. 22nd Street, Oak Brook, IL
All funds raised will go towards CLN2 Batten research via Noah’s Hope-Hope 4 Bridget, a 501(c)(3) nonprofit organization whose mission is to provide funding for research and education in efforts to find a treatment and cure for CLN2 Batten disease.
In 2017, the FDA and the European Medicines Agency (EMA) have each approved the first-ever CLN2 Batten disease enzyme replacement therapy called “Brineura”. While this is exciting news, your donation will allow us to continue searching for additional treatments and a CURE for CLN2 Batten disease.
Interested in sponsorship opportunities? Please contact Kathleen Jensen at firstname.lastname@example.org for details.
Hope on the Horizon $10,000+
Noah the Conductor $5,000+
Bridget the Go Getter $2,500+
Ethan, Master of Transit $1,000+
Princess Laine $500+
Have a auction item to donate? Please contact Jennifer Jesso at email@example.com for donating.