Help Needed!

Kat — Wed, 16 May 2012 14:03:24 +0000

We are working on securing some media contacts for our Road Trip for a Cure which we embark on this coming June 14th (wow!) and are reaching out to our bloggers, family, friends and anyone you know that might be able to help give our Road Trip some media exposure. We are looking for some medica coverage in Newspapers, blogs, Radio, etc.

Please contact us if you can help: team@teamrachel.com

Our Team Rachel Road Trip for Research is set-up like this (7,206 miles)

Hull, MA
Reynoldsburg, Ohio (the home of the BDSRA)
Kansas City, MO
Colorado Springs, CO (Friends and Camping)
Salt Lake City, UT
Eureka, CA (Pacific Ocean and Redwood Forest)
Seattle WA (Twin Sisters)
Billings, MT
Bloomington, MN (Mall of America0
Niagra Falls, NY (Woohoo!)
Hull, MA (Home)

Our goal is to bring Rachel to the west coast, swim in the Pacific ocean, raise awareness and research money for Batten Disease as well as meet Rachel’s 4 year old twin sisters for the first time (from her Father’s second marriage).

Batten Disease is a rare and fatal, genetic brain disease which affects children and has no cure. Most people and most doctors have never heard of the condition and without awareness these kids and future generations stand no chance. Research into Batten Disease treatments have positive implications with other diseases like Alzheimers, ALS, MS, Tay Sachs, Niemann Pick as well as dozens of others that most people have never heard of. While we are trying to cure Juvenile Batten Disease, the research put into this disease will help so many other people across multiple types of diseases and syndromes.

We are trying to raise $7206 to donate to Batten Disease Research at Mass General Hospital ($1 per mile). Please considering helping us reach our goal by either sending a donation via paypal or a check to:

Team Rachel, 35 N Street, Hull MA 02045 (Tax ID# 45-3078380)

If you can’t donate, if you have no media contacts, can you please share this blog with your friends and family via email, twitter and facebook. The more exposure we get, the better chance these kids have. There are doctors and scientists dedicated to these kids but because this disease is so rare they are underfunded. Please considering spending just a few minutes and sharing this website with those that you love. I only have a few more years with my beautiful daughter that suffers from this disease and I’d do anything to help you if you were in my shoes.

With love,

- Kat von Tungeln
Proud Mom of Rachel, Julie, London and Boston