Our mission is to fund rare disease medical research and compassionately support the Batten community.

Joined November 2017
91 Photos and videos
To celebrate Amelia and Makenzie’s birthday, we have birthday presents when you make a donation at SweetSixteen.givesmart.com
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The best auction in golf is LIVE! Bidding is open. Get yours in at SweetSixteen.givesmart.com
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Where do you want to play next? Our Sweet 16 Auction has a course on your wish list! SweetSixteen.givesmart.com
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Would you like to meet @DavidMcLayKidd and play the spectacular @BandonDunesGolf? We have an amazing auction item for you! e.givesmart.com/events/Nkt/i…
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Check out this special limited edition @ScottyCameron in our Take A Swing Fore Batten Auction! #scottycameron #putter #golfauction e.givesmart.com/events/Nkt/i…
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Just two more weeks! SweetSixteen.givesmart.com
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As part of Rare Disease week, the FDA expanded on the Plausibility Mechanism Framework. This framework is seen as a positive advancement for rare disease. Our team of experts – including Amelia - are watching this action by the FDA closely and will adjust accordingly.
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Check out this amazing custom truck available at the Scottsdale 2025 Barrett-Jackson show. 100% of hammer price to benefit the ForeBatten Foundation thanks to the generosity of Rick Steele and CARS By Constance #barrettjackson #carsbyconstance barrett-jackson.com/2026-sco…
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What a way to end a special day at a special place. Thank you TR for your support and allowing this event to flourish.
This shot 👀 Last of 20 players in the tiebreaker of the “2025 Take A Swing Fore Batten” charity event @TobaccoRoadGolf. Walk Off 👊
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Exciting news in ASO treatment for the CLN3 common mutation. We are proud that our years of research support have culminated in this development. Read the full announcements from ForeBatten and VCRDF forebatten.org/news-events
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7 years ago, we had our 1st fundraiser. Many of you were there that night. And many have joined us since. This amazing community came together again to raise…drum roll… $1.6M from our 7th Take A Swing Fore Batten online auction, our live and simulator tournaments!
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The ‘Best Silent Auction in Golf’ ends TONIGHT 10pm Eastern! Get your auto bids in now - it gets fast and furious at the end. ForeBatten2025.givesmart.com
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Today is #RareDiseaseDay. We have been spreading awareness all week. Karen, David, & Project Butterfly team members presented at @UNCneurology Grand Rounds. Karen & Dr. Jill Wiemer spoke @skpharmteco rare disease event. To honor this day, consider donating $28 on our website.
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