THE NOAH’S HOPE-HOPE 4 BRIDGET FOUNDATION hosted its 8th annual Batten disease fundraiser on Saturday, November 10, 2018 at the Marriott Oak Brook. The event hosts offer a gracious thank-you to the sponsors and 500 guests for making “A Fifth Season” the most successful fundraiser to date. More than

$275,000 was raised, which will go to support research, advocacy, and therapies to delay symptoms of CLN2 Batten disease through the Noah’s Hope–Hope 4 Bridget Foundation.

Keynote speaker, Dr. Jill Weimer, Senior Director of Therapeutic Development and Associate Scientist, Pediatrics and Rare Diseases Group in Sanford Research, Sioux Falls, South Dakota, spoke of the partnership of small nonprofits for rare disease and how critical it is to fund early-stage research in the lab that may translate into therapies for patients.

For the 7th year, Ben Bradley of WGN and Mike Schimmel motivated guests during the live auction and fund-the-need campaign raising over $103,000 and completed the evening with their annual “AFS selfie”.

Sara and David Kennicott and Jennifer and Tracy VanHoutan, founders of Noah’s Hope-Hope 4 Bridget, thanked sponsors, welcomed guests, provided a foundation research update, and held a tribute for Laine VanHoutan who passed away in March. Photos commemorating Noah, Bridget, Ethan, and Laine were featured around the room sharing happy memories of the Gahlbeck, Kennicott, and VanHoutan families.

CLN2 Batten disease is rare genetic disease that is often referred to as the ALS and dementia in children. Children with Batten disease develop 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 eat. We have devastatingly lost Noah VanHoutan (Downers Grove), Bridget Kennicott (Barrington), Ethan Gahlbeck (Elmhurst) and recently, Laine VanHoutan (Downers Grove) all between the young ages of 10-12 to Batten disease. Currently, there is no cure for this fatal childhood disease.

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 an effort to find a treatment and cure for CLN2 Batten disease. Visit www.NoahsHope.com and www.Hope4Bridget.com.

Noah’s Hope-Hope 4 Bridget Foundation“A FIFTH SEASON–UNMASK BATTEN” GALA FUNDRAISER

Cate Stocki, harpist

Décor provided by Cindy Hills of Barrington

PHOTOGRAPHY BY PAOLO CASCIO

Bridget Kennicott lost her battle to Batten disease at age 12, in 2017.

David and Sara Kennicott (Carpentersville/Barrington) and Jennifer and Tracy VanHoutan (Downers Grove) are the founders of the Noah’s Hope – Hope 4 Bridget Foundation

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Right: Barrington High School friends and volunteers, includ-

ing Bridget’s older brother, Harrison (back row, second from right in blue apron).

Above: In front, from left: Jennifer VanHoutan, Sara Kennicott, Dr. Jill Weimer (Senior Director of Thera-

peutic Development-Sanford Research), Dr. Michelle

Hastings (Rosalind Franklin University). Back row, from left: Tracy VanHoutan, Dr.

Jonathan Cooper (Professor of Pediatrics, Genetics and Genomic Medicine, Wash-

ington University, St.Louis) Dr. Elizabeth Berry-Kravis

(Neurology, Rush University), and David Kennicott.

Left: Attendees from the Barrington area included (in front) Bob and Karen Jensen, David and Sara

Kennicott, Kristina Anderson and Dave Cook.

Below: The Jensen Family: Sara (Kennicott), Bob,

Karen, Patrick, and Julie (Strode)

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