BBC Story: Sensory room hope for Amelia

Batten's is a horrible disease. I've had about five students with this condition over the years. I seem to find many articles about children with it from the UK. 

This story is about a grandmom raising money and awareness about Batten's Disease.

~K

** Sensory room hope for Amelia **
A Nottinghamshire grandmother is raising money for a "sensory room" for her three-year-old granddaughter, who is not expected to live beyond her eighth birthday
< http://www.bbc.co.uk/go/em/fr/-/news/uk-england-nottinghamshire-20294114 >

** BBC Daily E-mail **
Choose the news and sport headlines you want - when you want them, all
in one daily e-mail
< http://www.bbc.co.uk/email >

Family carers entitled to pay (Batten's Disease)

Ms. Kathy thought you might like to read the following story on Stuff.co.nz.
Family carers entitled to pay
It's a fulltime job for someone like Ra Timms to look after her daughter, Jordyn Rose, who has Batten disease. ... Read More
http://www.stuff.co.nz/timaru-herald/news/6920738/Family-carers-entitled-to-pay

Batten's Disease

http://tasteofcountry.com/keith-urban-jack-ingram-you-look-so-good-in-love-cover/

Batten's Disease: MOney for Austin

http://austin.culturemap.com/newsdetail/02-06-12-21-38-keith-urban-lends-talents-to-raise-money-for-austin-based-foundation-aimed-at-curing-rare-genetic-disease-affecti/

Batten's Disease: Community Turns Out for Hugs and Wishes

Ms. Kathy  has shared the following article from Shorewood Patch:
	Community Turns out for Hugs and Wishes Annual fundraiser for Shorewood H.U.G.S. has record turnout Saturday.... By Dawn Aulet I thought you might be interested in this article from the Shorewood Patch. Read more »

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Arlington public safety hockey game on Saturday to benefit Batten disease sufferer http://blogs.star-telegram.com/crime_time/2012/01/arlington-public-safety-hockey-game-on-saturday-to-benefit-batten-disease-sufferer--1.html

http://blogs.star-telegram.com/crime_time/2012/01/arlington-public-safety-hockey-game-on-saturday-to-benefit-batten-disease-sufferer--1.html

 

Batten's Disease

http://tasteofcountry.com/keith-urban-new-song-for-you-act-of-valor/

http://mskathyskids.blogspot.com

My girls could be dead before they're 12 - we have to make the most of every day! - mirror.co.uk

http://www.mirror.co.uk/life-style/real-life/2012/01/13/my-girls-could-be-dead-before-they-re-12-we-have-to-make-the-most-of-every-day-115875-23696670/#.TxCqcodgY3M.email
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Batten's Disease: Children's Hospital Celebrates First Year of Discoveries

http://www.prnewswire.com/news-releases/the-jan-and-dan-duncan-neurological-research-institute-at-texas-childrens-hospital-celebrates-first-year-of-discoveries-136929078.html

Country singer joins Austin dad's effort in finding cure for disease | kvue.com Austin

Country singer joins Austin dad's effort in finding cure for disease | kvue.com Austin* http://www.kvue.com/entertainment/Country-music-superstar-helps-dad-find-cure-for-deadly-disease-137282158.html

Neighbors Come Together to Light Up Randall Park Neighborhood, Raise Funds — Downers Grove news, photos and events — TribLocal.com

http://triblocal.com/downers-grove/community/stories/2011/12/neighbors-come-together-to-light-up-randall-park-neighborhood-raise-funds/#.TvIwApmqbJk.email

A dailymail.co.uk article from Kathy Batten's Disease

Batten's disease; 'Our son won't live past ten': Four-year-old is being poisoned to death by his own brain Read more: http://www.dailymail.co.uk/health/article-2059387/emailArticle.html#ixzz1dKYfmVPa



'Our son won't live past ten': Four-year-old is being poisoned to death by his own brain



Blighted by a fatal neurological disorder, four-year-old Morgan Mawson is unlikely to make it to his tenth birthday and is unable to walk or talk.



Full Story:

http://www.dailymail.co.uk/health/article-2059387/Batten-disease-Four-year-old-poisoned-death-brain.html



10 November 2011

www.dailymail.co.uk

Lakeshore update--Batten's Disease

Article Title:
Lakeshore update To view the contents on http://www.htrnews.com/, go to:
http://www.htrnews.com/apps/pbcs.dll/article?AID=/201105100412/MAN0101/105100493

Boy to Travel From Ireland to US to Treat Batten's Disease

In Short
A round-up of today's other stories in brief
http://www.irishtimes.com/newspaper/ireland/2011/0301/1224291080672.html
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Herald.ie: Brave little Liam undergoes pioneering brain surgery in NY

Brave little Liam undergoes pioneering brain surgery in NY
http://www.herald.ie/national-news/brave-little-liam-undergoes-pioneering-brain-surgery-in-ny-2635580.html
LITTLE Liam Heffernan will undergo serious brain surgery today in a New York hospital in his battle against Battens Disease.
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Knowledge Safari: Batten's Disease

http://ksafari.blogspot.com/2010/08/friday-facts-batten-disease.html

Vote VanHoutan's!!

http://drivingthemidwest.com/meet-the-our-town-our-heroes-finalists/

Go to the link above and help this family win. They have a child with Batten's and they are in the finalist position.

Batten's Disease Org of UK newsletter

http://bdfa-uk.org.uk/BDFA%20Spring%202011%20Batten%20Bulletin%20website%20version-1.pdf

Batten's Disease- Tow Trucks Light up the Night in Yellow for Murdered Friend

http://www.abc2news.com/dpp/news/region/baltimore_city/tow-trucks-'light-up-the-night-in-yellow'-for-murdered-friend-

 

Write the Happy Ending : What Next?

Kathy has sent you a link to a blog:
(Batten's Disease Blog)

Blog: Write the Happy Ending
Post: What Next?
Link: http://writethehappyending.blogspot.com/2010/10/what-next.html

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