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On February 11, 2008, at the age of six, Nicholas Wellner was diagnosed with Infantile Neuronal Ceroid Lipofuscinosis or easier said, Batten Disease. Batten Disease is an inherited, degenerative neurological disease that mostly affects young children

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On February 11, 2008, at the age of six, Nicholas Wellner was diagnosed with Infantile Neuronal Ceroid Lipofuscinosis or easier said, Batten Disease. Batten Disease is an inherited, degenerative neurological disease that mostly affects young children
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On February 11, 2008, at the age of six, Nicholas Wellner was diagnosed with Infantile Neuronal Ceroid Lipofuscinosis or easier said, Batten Disease. Batten Disease is an inherited, degenerative neurological disease that mostly affects young children

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On Line Store

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Skip to main content. A Cure 4 Nick. Shirts sizes are Adult Small thru XL. Shirts are $10.00. Add a Koozie to the shirt order for $2.00 each. You will be contacted by email to confirm that your order is in stock. At that time your payment will be processed. Please add $3.00 for shipping in the USA.

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Site Map

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Skip to main content. A Cure 4 Nick. This is a list of all the Web pages on this site.

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Batten

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Skip to main content. A Cure 4 Nick. What is Batten Disease? Batten disease is named after the British pediatrician who first described it in 1903. Also known as Spielmeyer-Vogt-Sjogren-Batten disease, it is the most common form of a group of disorders called Neuronal Ceroid Lipofuscinoses (or NCL). Although Batten disease is usually regarded as the Juvenile form of NCL, it has now become the term to encompass all forms of NCL. Batten disease is not contagious or, at this time, preventable. Infantile NCL...

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Pictures

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Skip to main content. A Cure 4 Nick. We handed out water and treats to raise awareness as well funds for Batten Disease!

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Press

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Skip to main content. A Cure 4 Nick. 04/2013 GAN research Dr. Steve Gray. 06/14/2011 Announcing the First Controlled Clinical Trial for Juvenile Batten Disease.

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Rare Disease Links

http://taylorstale.org/rare-disease-partners/links

Taylor’s Tale: One Little Girl’s Story. Other Treatment Approaches for Batten Disease. Visit the sites below to learn more about Taylor’s Tale’s partners, rare disease organizations, and to meet other affected children who, like Taylor, who are fighting for their lives.*. Batten Disease Support and Research Association (BDSRA). Beyond Batten Disease Foundation. National Institutes of Health (NIH). National Institute of Neurological Disorders and Stroke (NINDS). Rare Disease Legislative Advocates.

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Links | Holding on to Kate

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Holding on to Kate. To Create Awareness Of, And Work Towards A Cure For Batten Disease. Skip to primary content. A Walk Down Memory Lane. BDSRA Christmas party 2011. 5k registration form 2014. Batten Disease Support & Research Association. Hudson and Leila Mimlitsch. Leave a Reply Cancel reply. Your email address will not be published. Required fields are marked *. Proudly powered by WordPress.

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Skip to main content. A Cure 4 Nick. Click above for sound. A Cure for Nick was designed to raise. Awareness about Batten Disease while. Raising funds to support research. All proceeds from fund raising events are donated to Batten Disease research. Nicholas has always been our most energetic child! We always loved to watch him play football with his brother in our back yard. With his energy and strength we thought we had the next NFL star. Unfortunately, that has all changed. A Cure for Nick!

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