In the News is a compilation of articles, events or features about Batten Disease from newspapers, magazines or on the internet, etc.. Please send your submissions to the BDSRA office, see the Contact Us link.

Some of the following articles are in Portable Document Format (PDF). Special software is required to read them. A free copy of Acrobat Reader can be downloaded from adobe.com.

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The 2nd Annual Festival of Hope Craft Fair and Silent Auction was held on Saturday, October 20th, 2007. It was again held at the New Community Church in Raleigh, NC. New Community Church has been very gracious in donating the use of their facilities for 2 years now for this event. Live music was also played by George Fuller, founding pastor of NCC. A wide variety of crafts and goods were offered for sale, such as hand crafted jewelry, children's clothes, hair bows, hand made lip glosses, and pottery. The Hawkins, Lowther, and Leffler families were also there selling their "Favorites From Friends" cookbooks, marshmallow shooters and hand crafter shaker style cooling racks. Silent auction items ranging anywhere from jewelry to round trip airline tickets to an autographed Carolina Hurricanes' jersey were available for bidding. A grand total of $5168.10 was raised for the Juvenile clinical trial.
submitted by Danielle Lowden

Sarah's Good Deed - Sarah has been growing her hair out for the purpose of donating it to Locks of Love (locksoflove.org), an organization who makes wigs and hairpieces for children who have lost their hair as a result of serious illness. Today was the big day! We went to The Capital school of Beauty where she received royal treatment and got a very cute teenage haircut. As most of you know, Sarah has Batten disease, a rare and terminal illness that affects her brain. Although Sarah's intellectual function has been greatly impaired, she knew exactly what she was doing. Her own words: "I'm going to help sick kids. I'm growing it again and cutting it again."

She doesn't want any special recognition for her kind act, but I encourage you to share this story so that others might be inspired to donate also. We are so proud of Sarah.

Family stricken by nightmarish disease -- twice. Charlotte, NC - Fundraiser offers chance to help fight rare ailment.
Here is a photo the Hawkins wanted to share with you. This is after our Bake Sale today. We had a great event that raised over $1000.00 and then I got home and read an email from Danielle Lowden that McKenna was diagnosed this week. What a rollercoaster, anger, hurt and even more determination to find a cure so that others do not have to go through this. Special thanks to the Carneglia's, Brown's and Pam Barnard for sticking through the whole event! More info from Charlotte Observer.

Hawkins family finds dealing with public schools a daunting task. April 29th, CHARLOTTE, NC Complete story . . .

Sacramento Street Renamed in Honor of Batten Family: The main road leading to the box office of ARCO ARENA, home of the NBA Sacramento Kings and WNBA Monarchs is being renamed " David Peterson Drive " in honor of Tom Peterson and his family. Read more...

Cooking contest sponsored by Southern Living Magazine: ... UPDATED NEWS RELEASE -- Christie Katona, Margie Newell's first cousin, and a friend are finalists in a cooking contest sponsored by Southern Living Magazine and the event and judging is going to take place the first week in October in Charleston, South Carolina. The event will take place the first week of October, maybe Oct. 3, and will be televised on the Food Channel.

Ms. Katona says, " Our entry is Sweet Potato Cinnamon Rolls and talk about a great treat and worth every calorie."
The winner of the contest receives $10,000. It is Ms. Katona's intent that the award will go to Batten Disease Support and Research Association. Margie Newell has two children with juvenile Batten disease. Watch the Food Channel listings for when the program will be shown.