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A forum moderated by Beyond Batten Disease Foundation

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  • Affected Families: We need your help!
  • Giving Tuesday Thanks
  • Inspiring Family Takes on Philadephia Marathon
  • Run to The Light: A Sibling’s Life-Long Mission to Defeat Batten Disease
  • Sharon Terry at TedMed 2016

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b0bby branham on Rare is NOT an excuse
BATTEN DISEASE REPRE… on Batten disease on Good Morning…
Taylor’s Law:… on My Perspective: Laura King…
Aaron Sherrington on BBDF Attends Batten Registry C…
Morgan Rodriguez on My Perspective: Debbie Do…

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Month: April 2014

Longhorns Run Through the Night to Fight Rare Disease

Casis for EsmeStudents and alumni of the University of Texas at Austin come together to fight Batten disease by participating in Run to the Sun Relay – an overnight relay benefiting Beyond Batten Disease Foundation in Austin, Texas.

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April 22, 2014beyondbatten Leave a comment

Garland Benson, age 8

Eight-year-old Garland Benson shares what it is like living with a sister who has Batten disease.

April 21, 2014beyondbatten Leave a comment

Cypress family fights to eradicate Batten disease

WatsonMelinda and Sam Watson share their experience of raising two children with Batten disease. Rachel and Luke, now 20 and 21, were the inspiration for the Luke and Rachel Batten Foundation.

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April 21, 2014beyondbatten Leave a comment

Austin Teacher Uniting Staff with the Run to the Sun Relay to Support Student

Flyer- FINALLarry Chauvin is a PE teacher at Casis Elementary School in Austin, Texas. When he learned about his student’s fight with Batten disease, he wanted to help. Chauvin recruited a team of teachers to run  90 miles overnight in relay race from Enchanted Rock to Austin. This April, the teachers prepare to take on this challenge for the fourth time.

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April 18, 2014beyondbatten Leave a comment

Beyond Batten Disease Foundation-funded results provide new understanding for potential treatments

Beyond Batten Disease Foundation-funded results provide the very first mechanistic understanding (activation of cellular waste removal) necessary for designing cyclodextrin-based solutions for juvenile Batten and other diseases.

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April 4, 2014beyondbatten Leave a comment
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Categories

  • Batten in the News
  • Daily Living
  • Family Stories
  • Fundraising
  • Research
  • Supporters
  • Thankful Thursday
  • Videos

Recent Posts

  • Affected Families: We need your help!
  • Giving Tuesday Thanks
  • Inspiring Family Takes on Philadephia Marathon
  • Run to The Light: A Sibling’s Life-Long Mission to Defeat Batten Disease
  • Sharon Terry at TedMed 2016

Recent Comments

b0bby branham on Rare is NOT an excuse
BATTEN DISEASE REPRE… on Batten disease on Good Morning…
Taylor’s Law:… on My Perspective: Laura King…
Aaron Sherrington on BBDF Attends Batten Registry C…
Morgan Rodriguez on My Perspective: Debbie Do…

Archives

  • December 2017
  • November 2017
  • October 2017
  • May 2017
  • August 2016
  • July 2016
  • June 2016
  • May 2016
  • April 2016
  • March 2016
  • December 2015
  • November 2015
  • October 2015
  • September 2015
  • August 2015
  • July 2015
  • June 2015
  • May 2015
  • April 2015
  • March 2015
  • February 2015
  • January 2015
  • December 2014
  • November 2014
  • October 2014
  • September 2014
  • August 2014
  • July 2014
  • June 2014
  • May 2014
  • April 2014
  • March 2014
  • January 2014
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