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/

Super Bowl Sunday Turns Into A Precious Day For Blind 12-Year-Old Fan And His Dad

MsKathy sent this using ShareThis.

Super Bowl Sunday Turns Into A Precious Day For Blind 12-Year-Old Fan And His Dad Source: thepostgame.com Super Bowl Sunday Turns Into A Precious Day For Blind 12-Year-Old Fan And His Dad Sunday, February 5, 2012 8:53 pm Jon Miller will never see an NFL game, but his doting father made sure he came to the Super Bowl anyway. As much as the Super Bowl is known for its celebrities, corporate tickets and big money glitz, it can also be an epic and heartfelt event for families seeking the most unique and bonding of experiences. One of those stories could be found in the upper decks of Lucas Oil Stadium o...

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

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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