top of page

“Learn from yesterday. Live for today. Hope for tomorrow.”

Orison Swett Marden

Bad Batten

the unwanted guest

"Bad Batten - The Unwanted Guest" is a way to give Amelia and Makenzie a voice against this disease as well as to give others a glimpse into living with Batten.

View Video Series

News

updates from the foundation

Events

upcoming fundraising events

Media

forebatten in the media

ForeBatten Foundation Announces Progress in Development of ASO Therapy for Common CLN3 Mutation

ForeBatten announces Zebronkysen: Amelia & Makenzie receive personalized ASO drug

A note from Karen and David regarding Amelia & Makenzie's ASO treatment

Amelia and Makenzie have an exciting summer

Update on Amelia + 2022 Year in Review

Amelia is hospitalized

The Kahn's take a scary leap and are thankful

FORE - ever grateful! Take A Swing Fore Batten raises $1.4M

The Kahns move to North Carolina, Research and Fore The Journey Updates

2021 year in review celebrating the foundation accomplishments and noting the changes in Makenzie and Amelia brought on by Batten

New grant received, study on CLN3 published, Beat the Heat/Beat Batten event, new research funded and Fore The Journey update in the July 2021 newsletter

The Foundation and the family look back on 2020 in the January 2021 Newsletter

Amelia and Makenzie's new "normal", Fore The Journey Fund created, Butterfly Contest winners announced and research updates in the November 2020 Newsletter

Two years post diagnosis update, new research funded, results of the first annual Take A Swing ForeBatten event in the January 2019 Newsletter

Our special Sweet 16 edition of Take A Swing ForeBatten online Auction

E84: A Family's Fight Against Batten Disease

Eureka Podcast 1.7.25

U-M researchers develop a personalized RNA therapeutic used to treat twins with an ultra-rare form of Batten disease

U-M Center for RNA Medicine 9-25-24

A UNC Health First: A Fast-tracked Study to Help Twin Girls Battle Batten Disease

TV Sportscaster John Telich talks with David Kahn about golf course design and battling juvenile Batten disease

Telich Talks Podcast 8.29.23

How you can play Michael Jordan’s exclusive private club and many other top courses by entering an auction for a great cause

Golf Digest 9.6.22

In this exciting study, Weimer Lab demonstrates for the first time an overlap in many CLN interacting partners.

Sponsored Research Published

11 year old Valerie shaved her head to raise awareness and funds!

KNWA News Coverage

Beat the heat, beat Batten at Kona Ice events across the US on June 9, 2021

See all the fun!

Article describing the 6-year journey to diagnosis of twin girls with varying presentations of the same rare disease. June 2021

JAAPA Clinical Journal

David joins Derek Duncan to talk about the emotional toll of caring for his daughters, the shock of their diagnosis four years ago, and how he and his wife, Karen, have created the Fore Batten Foundation to raise awareness and money to fight the disease through one of golf’s largest and most prestigious online auctions.

Feed The Ball Podcast (3.9.21)

The golf world has rallied around architect David Kahn’s family, raising money for his daughters’ rare illness

Golf Digest (3.6.21)

In honor of Rare Disease Day, the Weimer Lab sends a special thank you to ForeBatten donors

Thank You To Donors

A joint collaboration with BDSRA providing Batten families with grants to bring much needed smiles

Fore The Journey Fund

Researched funded by ForeBatten published in prestigious journal Nature Medicine

NatureMedicine.com

Karen and David participated as panelist in "Coping in Times of Uncertainty with Team Amicus"

Two Disabled Dudes Podcast

A course designer’s fight to cure Batten disease continues. Here’s how you can help.

Golf.com (2-28-20)

As course designer David Kahn’s twin daughters continue to fight Batten disease, he and his wife are battling back

Golf.com (2-21-19)

Fighting for a miracle: Course designer David Kahn and his wife, Karen, search for strength in the most daunting battle imaginable

Golf.com (3-6-18)

bottom of page