Upcoming Family Fundraisers
November 7: 4th Annual Festival of Hope -- Raleigh, NC
November 7: Metro NY/NJ Chapter Annual Bowl-A-Thon -- Staten Island, NY                                                       SE Chapter Online Fundraiser:  Buy a coupon book for holiday gift giving  www.entertainment.com/email   Seller #255686

Goodsearch & Goodshop Everytime you search or shop online  at over 1000 stores nationwide.  BDSRA can receive a donation.  We have raised over $1200 this year thanks to you.  Please visit www.goodsearch.com and designate BDSRA as your charity.   Spread the word!

2010 BDSRA Dues
Membership Dues for 2010 are increasing to $40.00. The dues have not been changed since the organization's inception in 1987. Each paid membership receives one vote in the annual elections and all other voting matters. Dues help pay for things like printing and shipping brochures, educational materials, and the Illuminator. They also pay for our numerous programs and services available to everyone who calls or contacts us.

If you live in an area with an active chapter, please pay your $40.00 to your chapter. If you do not live in an area with an active chapter, you can pay your dues directly to the National BDSRA office. You may also pay your dues online through our website. If you have any questions, please contact us.

BDSRA Medical Equipment Exchange
BDSRA maintains a Medical Equipment Exchange for its families. We have many pieces of equipment available including wheelchairs, suction machines, bath aides, feeding supplies, etc. These items are available to BDSRA families at NO COST! The latest list of our inventory can be viewed by going here. If you need a piece of equipment or have equipment to donate, please contact Amy Lombardi (kirka@bdsra.org).

BDSRA Attends Child Neurology Society Conference
Every year, BDSRA National Staff attends the Child Neurology Society Conference. This year, from October 14-16, the staff traveled to Louisville, KY for the opportunity to set up a booth and speak to doctors, nurses, medical students, and other professional in the child neurology field. We update them on the latest testing methods available, educate them on the symptoms of Batten Disease and give them the latest news on clinical trials and research.

BDSRA National Office Staff
Lance Johnston, Executive Director
Nancy Carney,RN, Medical/Family Liaison
Amy Lombardi, MSW, LSW Coordinator of Family Services
Adina Ryan, Director of Development
Donna Gunn, Office Manager
 
Batten Disease Support and Research Association
1-800-448-4570
http://www.bdsra.org

Hello {FIRST_NAME},  

Great Britain father running Virgin London Marathon
Pete Griffith is a man on a mission. For the last 5 years he has been trying to secure a spot in the annual London Marathon. On April 25, 2010, Pete's hard work will finally pay off when he runs in the Virgin London Marathon. Pete's two daughters, Misha and Natalie, both died of Late Infantile Batten Disease. He is running this marathon in memory of them and to raise awareness for Batten Disease. The money that Pete raises from the marathon will benefit the Batten Disease Family Association (the UK's support organization) and the Helen & Douglas House in England. Pete has begun his intense training and has also begun raising money. We wish Pete the best of luck!