5k Run/Walk For Batten Disease

Lake Phalen Pavilion
1600 Phalen Drive
St. Paul, MN

Saturday, May 10, 2008

USATF - CERTIFIED COURSE

Schedule

REGISTRATION - 9:00 - 9:45 A.M.
KIDS FUN RUN - 9:55 A.M.
5K RUN - 10:05 A.M.
5K WALK 10:10 A.M.
AWARDS CEREMONY 11:30 A.M. (1st, 2nd and 3rd Awards given to every age category)

What is Batten Disease?

Batten Disease, also called Neuronal Ceroid Lipofuscinosis, is a rare, genetic, degenerative brain disease which currently affects approximately 1,900 children throughout the United States. One in 100,000 people carry the defective, recessive gene for Batten Disease. In order for a child to have the disease, both parents must pass a copy of the recessive gene to the child. There is a one in four chance that a child will receive a copy from its parents. Children with Batten Disease develop normally until the onset of the symptoms of this disease. Progression of Batten Disease differs with each child, but generally takes the following course.

Visual impairment progressing to complete blindness
Frequent and uncontrollable seizures
Personality and behavioral changes
Loss of communication skills
Rapid decline in cognitive function
Facial grimacing and abnormal body movements
A general progressive deterioration

The ultimate and unavoidable fact about Batten Disease is that there are no survivors.

We are planning to make this a fun time for the whole family with:

Clowns
Face Painting
Food
K-9 Demonstration
Kids Fun Run
Prize Raffle
Silent Auction

Registration

Entry fee is $20 for Runners if preregistered before Apr. 28, $25 on race day.
Walkers are asked to get pledges. We encourage them to raise $100.

Print out, fill in and mail the registration form to

ALL DONATIONS ARE TAX DEDUCTIBLE

5 Helpful Hints to Raise $100!

Ask 5 people for $20

1. Put in $20 of your own money.
2. Ask a relative for $20.
3. Ask a classmate/co-worker for $20.
4. Ask a friend for $20.
5. Ask your neighbor for $20.

BDSRA - MN CHAPTER:

Was formed by parents of children with Batten Disease. Our mission is to be a support to our chapter families, to educate people about this disease and to help raise research dollars to find a cure for Batten Disease. We are a 501(c)(3) nonprofit organization. Seventy percent (70%) of the monies raised through this event will be given to our National Organization for the research of Batten Disease, twenty percent (20%) will go toward family support and the remaining ten percent (10%) will go toward keeping our Chapter functioning and to pay for expenditures incurred in putting on this and other fundraising events.

We certainly appreciate all you have done for our kids.

For more information on this event

You can contact me by phone 651-429-3871 or e-mail me at mnbdsra@yahoo.com or write me at BDSRA - Minnesota Chapter
Joni Metcalf, President
PO Box 270595
Vadnais Heights, MN 55127 Web site: www.mnbdsra.org

For more information about this disease

contact our national organization at: BDSRA
120 Humpries Dr, Suite #2
Reynoldsburg OH 43068
Phone: 1-800-448-4570
http://www.bdsra.org