The Kahn family created ForeBatten Foundation shortly after their twin girls were diagnosed with juvenile Batten disease (CLN3) in 2017. “Fore” means “ahead” or “forward,” and those familiar with golf know it’s heard when something unavoidable is heading your way—much like Batten disease. The Kahns are now driven to change the future for all children with CLN3 by funding critical #research, providing happy experiences to Batten families through the Fore the Journey Fund (a collaboration with Batten Disease Support and Research Association (BDSRA)), and raising awareness of this devasting disease. Thank you to UnitedHealth Group and Tilt Motion for producing this video as part of the grant awarded to ForeBatten Foundation at the 24th annual golf charity event. And a special thanks to Leslie Cozatt for nominating ForeBatten for this generous grant which is pivotal in driving #awareness. https://lnkd.in/eSbxDvbZ #battendisease #rarediseaseawareness #rarediseaseresearch
ForeBatten Foundation
研究服务
Scottsdale，AZ 287 位关注者
We provide funding, support and hope for the Batten community
关于我们
David and Karen Kahn started ForeBatten Foundation in early 2017 when they received the devastating news that their twin girls, Amelia and Makenzie, had been diagnosed with juvenile Batten disease (CLN3); a rare and fatal genetic disorder of the nervous system which leads to vision loss, seizures, and loss of speech and motor function. ForeBatten supports researchers as they develop multiple therapies to detect, treat and potentially cure Batten disease. Rare diseases like Batten do not receive the same government assistance as other, more prevalent diseases, so we must join together as parents and caring individuals who are not willing to accept the fate of a Batten diagnosis. We work tirelessly to give children with Batten disease the best possible life, to spread awareness of the urgency to fund new treatments, and to help all families affected by Batten disease.
- 网站
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https://www.forebatten.org/
ForeBatten Foundation的外部链接
- 所属行业
- 研究服务
- 规模
- 1 人
- 总部
- Scottsdale，AZ
- 类型
- 非营利机构
- 创立
- 2009
地点
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主要
获取路线
US，AZ，Scottsdale，85255
ForeBatten Foundation员工
动态
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ForeBatten just returned from The 2024 NCL Translational meeting in Chicago. This meeting is organized by Our Promise To Nicholas Foundation with help from Weimer Lab We (Karen and David) first attended this meeting in 2017, just 6 months after Amelia & Makenzie’s diagnosis. It was not inclusive of CLN3 at the time, but we were told ‘go there', all the scientists you need to talk to are all in the same room. So David and I went. I became enthralled with the science and David spent the entire time drawing golf courses. That meeting was the catalyst for ForeBatten building an incredible team of scientists dedicated to this horrible disease. So THANK YOU Heather and Chris, this conference makes a difference! Seven years later, we found ourselves standing before the same group of researchers introducing the ForeBatten team. It was our first opportunity to present on the science, clinical protocol and roadmap of how we successfully brought Zebronkysen to Amelia and Makenzie in an accelerated timeframe. This time, David joined remotely and ended the meeting with a truly inspiring reflection. It was a pinch-me experience. We are so proud and grateful for the amazing individuals who passionately embraced our family and made the treatment dream a reality. This is just the beginning for ForeBatten Foundation. Tiffany Sepp Russell Gotschall Jill Weimer, PhD Michelle Hastings Jessica Centa
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Such a surreal experience!
ForeBatten just returned from The 2024 NCL Translational meeting in Chicago.?This meeting is organized by Our Promise to Nicholas Foundation with help from Weimer Lab. We (Karen and David) first attended this meeting in 2017, just 6 months after Amelia & Makenzie’s diagnosis.?It was not inclusive of CLN3 at the time, but we were told ‘go there, (by Jill Weimer, PhD) all the scientists you need to talk to are all in the same room.' So David and I went.?I became enthralled with the science and David spent the entire time drawing golf courses. That meeting was the catalyst for ForeBatten building an incredible team of scientists dedicated to this horrible disease. So THANK YOU Heather and Chris, this conference makes a difference! Seven years later, we found ourselves standing before the same group of researchers introducing the ForeBatten team.?It was our first opportunity to present on the science, clinical protocol and roadmap of how we successfully brought Zebronkysen to Amelia and Makenzie in an accelerated timeframe.?This time, David joined remotely and ended the meeting with a truly inspiring reflection. It was a pinch-me experience.?We are so proud and grateful for the amazing individuals who passionately embraced our family and made the treatment dream a reality.?This is just the beginning for ForeBatten Foundation. Tiffany Sepp Russell Gotschall Carol Mabry Schwimmer Michelle Hastings Yael Shiloh Malawsky Karen Kahn David Kahn
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ForeBatten just returned from The 2024 NCL Translational meeting in Chicago.?This meeting is organized by Our Promise to Nicholas Foundation with help from Weimer Lab. We (Karen and David) first attended this meeting in 2017, just 6 months after Amelia & Makenzie’s diagnosis.?It was not inclusive of CLN3 at the time, but we were told ‘go there, (by Jill Weimer, PhD) all the scientists you need to talk to are all in the same room.' So David and I went.?I became enthralled with the science and David spent the entire time drawing golf courses. That meeting was the catalyst for ForeBatten building an incredible team of scientists dedicated to this horrible disease. So THANK YOU Heather and Chris, this conference makes a difference! Seven years later, we found ourselves standing before the same group of researchers introducing the ForeBatten team.?It was our first opportunity to present on the science, clinical protocol and roadmap of how we successfully brought Zebronkysen to Amelia and Makenzie in an accelerated timeframe.?This time, David joined remotely and ended the meeting with a truly inspiring reflection. It was a pinch-me experience.?We are so proud and grateful for the amazing individuals who passionately embraced our family and made the treatment dream a reality.?This is just the beginning for ForeBatten Foundation. Tiffany Sepp Russell Gotschall Carol Mabry Schwimmer Michelle Hastings Yael Shiloh Malawsky Karen Kahn David Kahn
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We are so thankful for Dr. Michelle Hastings' brilliance and dedication.
?? Michelle Hastings, Ph.D., University of Michigan Center for RNA Biomedicine ???? RNA Therapeutics Director, develops a personalized #RNA therapeutic #ASO drug for a first-of-its-kind "N-of-2" study underway now at University of North Carolina at Chapel Hill School of Medicine to treat twins with an ultra-rare form of Batten disease. Jessica Centa Michigan Medicine U-M Biosciences Initiative UNC Neurology ForeBatten Foundation University of Michigan University of Michigan Medical School Rosalind Franklin University of Medicine and Science Read more ?? https://lnkd.in/gK-Qy_iw
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ForeBatten announces Zebronkysen: Amelia & Makenzie receive personalized ASO drug. “We believe that Zebronkysen is paving a path towards a better future for newly diagnosed children and will be part of the evolving story of personalized medicine. We hope this effort also provides proof of concept to develop an ASO treatment for the common CLN3 mutation,” said Karen Kahn, ForeBatten Foundation. For more information on this exciting news, please see our website https://lnkd.in/ebKe4_d Michelle Hastings Jessica Centa Vanguard Clinical, Inc. Tiffany Sepp UNC Health University of Michigan Center for RNA Biomedicine ???? SciLucent, Inc. Charles River Laboratories Argonaut Manufacturing Services Inc. Nitto Avecia Gavin Malenfant Russell Gotschall Bernadette Keane BioDev Services Jill Weimer, PhD Dave Pearce
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It is time again for an unforgettable golf experience at one of North Carolina’s most iconic tracks, Tobacco Road Golf Course. This unique event will start the evening of September 30th at the Kahn's backyard course nicknamed Lot Fifteen. The fun will continue at Tobacco Road on October 1st where ForeBatten supporters will experience 36 unique holes of team competition, unexpected challenges, and "feel-good" fun including a chance at $1M. Questions? Contact Stan "Proud Papa" Kahn at 440-725-3395 or [email protected]
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