More Information
Batten Disease Support and Research Association
An international support and research networking organization for families of children and young adults with an inherited neurological degenerative disorder known as Batten Disease.
The home page of Partnerships for Cures. This is a Chicago based charitable non-profit 501c3 foundation. The Jasper Against Batten Fund partners with the Partnerships for Cures foundation in her effort to raise funds and arrange treatment for Jasper and other children.
National Institute of Neurological Disorders and Strokes
NCL information center in the Netherlands
Media
Cornell Medical Center Gene Transfer Therapy
Article about the first Gene Transfer Therapy
TV report about Batten Disease; May 8, 2009
TV report about two families, their struggle with Batten disease and the treatment alternatives.
ABC report on Jasper Against Batten; May 15 2009
ABC News report about Jasper Against Batten fundraising with the Chicago public and private schools
Chicago Sun Times article about Jasper Against Batten; May 16 2009
Newspaper article about our ‘decorated collection can drive’ in Chicago
Langzaam Sterven (in Dutch; July 10 2009)
The Dutch national newspaper Trouw did an article on ‘our story’
Bedelen voor Jasper’s leven (in Dutch; July 29 2009)
Nederland in actie voor doodzieke Jasper (in Dutch; July 30 2009)
The Dutch national newspaper Algemeen Dagblad put our story very prominent on the front page of their newspaper!! The next day they did also a nice follow up story.
Alexandra Thomas from the Medill Graduate School of Journalism (Northwestern University) made a nice report about the JAB story.
Brief aan je kind (In Dutch; August 21)
Article in the Libelle (Dutch magazine) concerning a letter from a mother to her child (Pip to Jasper).
Noah & Laine’s story (Chicago Tribune Sept 16 2009)
The Chicago Tribune made a nice report about our friends and partners in our battle against this disease; the VanHouten family from Chicago.
Report on benefit concert for JAB
RTV Utrecht covered a benefit concert in honor of JasperAgainstBatten (September 2009)
Knokken voor je zieke kind (In Dutch, September 19 2009)
The Dutch national newspaper, De Volkskrant did a very nice story about our story and other orphan diseases.
Capstone hosts Batten Disease Charity Day (HedgeWeek Sept 22 2009)
Hart van Nederland report on JAB fundraiser
SBS6 report about Jasper Against Batten fundraising with the Vincent van Gogh school in Assen
CBS Evening News report on JAB Nov 14 2009
CBS News report about Jasper Against Batten fundraising with the Chicago public and private schools
NBC News report about Lighthouse and Jasper Jan 23 2010
Article in magazine ‘Vriendin’ (in Dutch, Jan 25 2010)
ABC News report about Jasper’s ‘birthday party event’ (Jan 24 2010)
Poker Tournament article in Financieel Dagblad March 3 2010 (Dutch)
Article about poker tournament for Amsterdam trader community.
Woerdense Courant Article on Utrecht Marathon April 7 2010 (Dutch)
Woerdense Courant Article about the fundraising efforts of Jolanda (August 5, 2010 in Dutch).
Other Stories