Fundraising

2017


A Fifth Season ~ Celebrate!

Saturday, November 11, 2017
5:00PM
Double Tree by Hilton Hotel

CLN2 Batten disease is a ruthless childhood condition that has stolen our children’s livelihood and then, lives. We have devastatingly lost Ethan Gahlbeck (age 10, 2015), Noah VanHoutan (age 11, 2016) and Bridget Kennicott (age 12, 2017) to Batten disease. And now we watch as Laine VanHoutan (age 11) continues to bravely battle against the monster we know as Batten. 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.

If only there were more hours in the day, or a fifth season in the year, we would have more time to find a cure for CLN2 Batten disease.

We are hosting our 7th annual benefit to fund Batten disease research called “A Fifth Season…..Celebrate.”  

A Fifth Season will provide a celebratory atmosphere, with dinner, dessert, open bar and an impressive live and silent auction.

ORDER TICKETS NOW

Funds raised will go to Noah’s Hope- Hope 4 Bridget Foundation, a 501(c)(3) nonprofit organization, to support research specific to 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.

For Sponsorship opportunities or further information, please contact:

Kathleen Jensen or Patrick Jensen 

Hope is on the Horizon: $10,000 or more
Noah the Conductor: $5,000 or more
Bridget the Go Getter: $2,500 or more
Ethan, Master of Transit: $1,000 or more
Princess Laine: $500 or more

2016

napa-2 napa

A Fifth Season
Brightening the Landscape of Batten Disease

A Night in Napa

Batten disease has overcome our children’s lives. It is their everyday- their normal. But for many, this is a completely unheard of disease and definitely NOT normal.

If only we had more time to find a cure.

With A Fifth Season fundraiser, we hope to change the landscape for future Batten children and their families by raising critical funds for Batten disease research. In the past year, we devastatingly lost Ethan Gahlbeck, age 10 and Noah VanHoutan, age 11, to this ruthless disease. And now we watch as Bridget Kennicott (age 11) and Laine VanHoutan (age 10) continue to bravely battle against the monster we know as Batten. It is time to find a cure!

Please join us:

Saturday, November 12th
5:30 PM-11:00 PM
The Cotillion Banquets
360 S. Creekside Dr.
Palatine, Il 60074

Dinner, Drinks, Live & Silent Auction with guest Emcee, ABC 7’s  Ben Bradley & more!

Buy your ticket or donate today

Early Bird single ticket price of $80.

* Reserved seating & discounted tickets available when buying “Table of 10” for $700.

The ticket price increases on 10/12/16.

If you are not able to access the link above, please copy the URL below into your browser’s address bar: https://hope.z2systems.com/eventReg.jsp?event=3&

Sponsorhsip Opportunities

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+

Please contact Kathleen Jensen for details about A Fifth Season’s sponsorship opportunities katjensen4@yahoo.com

A Fifth Season is hosted by Noah’s Hope-Hope 4 Bridget, a 501(c)(3) registered charity supporting Batten disease research and recognized by the IRS.

Federal Tax ID: 47-2609776

2015
World Rare Disease Day

World Rare Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare diseases and their families.

The 8th annual World Rare Disease Day will be held on Saturday, February 28, 2015. On this day, various activities take place in the United States, Europe, Russia, Japan and elsewhere around the world.

In our very own town, we will be kicking off the week with a Rare Disease Rock Concert at North Barrington School. Please join other families for dancing, snacks & fun this Friday night from 7- 9 PM in the NBS gym. Our very own COLTS (Community Outreach Lives Through Students) committee is sponsoring this event which is free of charge, but suggested donations will go to Hope 4 Bridget Foundation and other rare disease outlets. You don’t want to miss our featured band, Better With Bacon! Come and support rare disease!

2014
Growing Cents of Style Oct. 4 & 5

Growing Cents of Style Sale coming THIS weekend! Come shop the sale and look for the HOT PINK tags! All purchases are 100% donated to the Bridget Kennicott Special Needs Trust, which helps pay for uncovered medical equipment and care for Bridget. Visit the Tree Time Christmas Classics building 22N102 Pepper Road Lake

Barrington, IL \ One black North of Route 14, behind Pasquesi’s For more information, please visit the web site or email Jenny Welsh at www.growingcentsofstyle.com info@growingcentsofstyle.com www.growingcentsofstyle.com info@growingcentsofstyle.com

A Fifth Season, November 15

Four special children are battling Late Infantile Batten disease in the Chicago land area. Noah (10), Bridget (9), Ethan (9), and Laine (8) all suffer from this horrific childhood disease where once they ran, laughed and played. Now they are wheelchair bound, tube fed and uncommunicative. At this time, Batten disease is always fatal- there is no treatment. There is no cure.

If only there were more hours in the day, or a fifth season in the year, we would have more time to find a cure for Batten disease. And we would have more time for each of these special children to experience a childhood before Batten disease ruthlessly rips it away. It is time to find a cure.

Hope 4 Bridget, Noah’s Hope and Cures Within Reach are hosting our 4th Annual Benefit to fund research on behalf of all four children, called “A Fifth Season…..Brightening the landscape of Batten Disease.”
A casual gala for a serious cause, which will be held on Saturday, November 15, 2014 at 5:30pm at the Cotillion Banquets in Palatine, Illinois.
The Fifth Season fundraiser will provide a big benefit experience with a relaxed atmosphere, featuring fantastic live music, special appearances/amazing emcees, impressive live and silent auction, dinner, dessert, and open bar.

Please join us for a remarkable evening of friendship, love and hope.