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ForeBatten Foundation
Приєднався 8 жов 2018
2021 Year in Review
The saying “the days are long but the years are short” is commonly used by parents, but for Batten parents it is particularly poignant. Looking back at 2021, we celebrate the accomplishments of our foundation while noting the changes in Makenzie and Amelia brought on by Batten.
Learn more about our foundation and mission at www.forebatten.org/
Learn more about our foundation and mission at www.forebatten.org/
Переглядів: 1 654
Відео
KNWA News Story on Buzz OFF Batten
Переглядів 9613 роки тому
Bentonville, AR girl shaves head to raise awareness of juvenile Batten disease. Find more information about juvenile Batten disease and the family that Valerie Schwimmer is supporting at www.forebatten.org/
Amelia and Makenzie's juvenile Batten disease (CLN3) story.
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The Kahn family created ForeBatten Foundation (www.forebatten.org/) 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. Today, the girls experience vision loss, grand Mal seizures, severe childhood dementi...
Bad Batten - The Unwanted Guest (Episode 03)
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Episode 3 - Silly Mak "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 juvenile Batten disease (CLN3) www.forebatten.org/
Take a Swing Fore Batten III - Scientific Speech
Переглядів 2034 роки тому
Dr. Jill Weimer from Sanford Research and Amicus Therapeutics discuss our foundation's sponsored research projects with our donors at our annual fundraising event at Topgolf Scottsdale on March 2nd, 2020.
Take a Swing Fore Batten 1
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ForeBatten Foundation's inaugural event at Topgolf Scottsdale
Bad Batten - The Unwanted Guest (Episode 02)
Переглядів 3,7 тис.5 років тому
Episode 2 - Go Away Batten "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 juvenile Batten disease (CLN3) www.forebatten.org/
Bad Batten - The Unwanted Guest (Episode 01)
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Episode 1 - The Interview "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 juvenile Batten disease (CLN3) www.forebatten.org/
Jackson Brenda Clark Robert Wilson Anna
Thompson Charles Walker Carol Johnson Larry
Moore Carol Thomas Deborah White Charles
Clark Brenda Jones Michelle Garcia Maria
Hernandez Daniel Brown Michelle Hernandez Mark
Moore Charles Davis Melissa Anderson Donald
Robinson Barbara Walker Robert Lewis Matthew
Brown Betty Rodriguez George Thompson Charles
#kennedy2024
❤😢👍
Ola! Minha filha tem 7anos e aos 3 anos começou com as crises . Ela foi diagnosticada com a doença de batten tipo 7, estou muito aflito porque durante esses dias ela vem tendo muias crises, ela deixou de andar deixou de falar(dont speak), e por fim deixou de ver. Que associação existe pra lutarmos por essa causa ( doença)? Felizmente a outra minha fez o exame e nao tem essa doença. Gostaria q entrassem em contacto comigo
Everyone needs salvation here are the words of salvation please forgive me jesus im a sinner come into my heart and save me from my sin I no that you are the savior and I no that you died for me on calvary and I no that God raise you from the dead and you are alive and I thankyou for your salvation in Jesus holy name amen and its important to always ask for forgiveness every night 🌙 ✨️ ✨️ ✨️ ✨️ ✨️
What was this about? Really, what does it mean?
Look up Batten Disease. She has it. She’s describing a bit about how it feels. She calls her pains and the abnormal things she sees due to Batten-related eye disease as her ‘battens’ - as in each one is a ‘batten’.
Alot of supprt
EU frisndship
My 7 year old son was diagnosed with juvenile Batten CLN3 last Friday. I have spent the last week absolutely shattered. I am finally ready to reach out to you and was so happy to see in this video you are moving to Chapel Hill, NC- we are located in Raleigh, NC. My son is under the care of Duke and will soon be seeing a pediatric neurologist there. We are waiting for results to find out if our youngest son has this disease as well. I believe my friend reached out to you in my behalf (trying to help me this week because I have been crushed by this- I will look back through our messages because I believe I remember her sending a message from you Karen saying I could reach out when I felt ready. Will be contacting you soon!
This is just pure hell ... 😢 Lord bless them...
Thank you. ...you're work is immeasurable.