We have already raised over $400 towards our $7206 goal to fund research for Batten Disease. The kids are excited, Rachel keeps on trying to convince me that flying would be so much easier (no shit, love) but that wouldn’t draw attention to her, to the disease, to the lack of treatments. The minivan we just bought is being lettered tomorrow with Team Rachel’s info all over it to draw attention to us. I personally hate attention, the attention of this disease, the admiration of doing a good job with Rachel and fundraising (etc), but I’ll grin and bear it every last step of the way for this kid, for all of these kids. Can’t wait to hit the road with our business cards, bracelets, pamphlets and our brightly lettered van to get more money into the hands of the people who are tirelessly researching to cure Batten Disease and several other genetic diseases just like it. If we can figure out one, it will give us answers to others. I won’t quit this fight until the day my heart stops beating. Please donate if you can and spread the word if you are able.
Kat (Rachel’s Mom)
Picture: Rachel and Julie at the end of walking in Hull’s Memorial Day Parade.Read More
Stay tuned for all sorts of exciting road trip and fundraising updates while we drive coast to coast (and back) for Batten Disease Awareness and Fundraising!!!
Click here to follow: https://twitter.com/#!/teamrachRead More
We are holding a lemonade stand in front of our house on 35 N Street from 3-8pm on Monday, June 11th. There are a bunch of events going on that night so we are open for business before and after anything you have going on.
We’re selling Lemonade, Batten Disease Bracelets and more! All money is for Batten Disease Research (the Road Trip is being funded by Rachel’s family). Come and join us! We are working towards a goal of $7,206 which = $1 per mile that we’ll be driving on our road trip.Read More
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: firstname.lastname@example.org
Our Team Rachel Road Trip for Research is set-up like this (7,206 miles)
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)
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.
- Kat von Tungeln
Proud Mom of Rachel, Julie, London and Boston
Alright, these road trip plans are coming together and we’ve added some new items to the bucket list. We are traveling from Boston MA through Colorado Springs CO to Eureka CA to Seattle WA and back to Boston via Bloomington, MN and Niagra Falls (NY). Take a look at our bucket list and let me know if you can think of any MUST SEE/TOUCH along our route.
This might be Rachel’s last BIG road trip so I really want to make it special. Batten Disease is slowly stealing my girl and I’m not about to have her miss out.
John will be flying out on the morning of July 4th to meet us in Seattle to enjoy a few days with my xhusband and his family (Rachel’s twin sisters) and then we’ll head back.
I’ve also found someone to do the minivan lettering (thank you Kerri @ Mayo Designs) “Batten Disease Road Trip for a Cure” and reference this website to try and get the full $7206 for Batten Disease research ($1 per mile).
If you can donate please click the link on the right that says “donate” or you can mail a check to: Team Rachel, 35 N Street, Hull MA 02045. You can also bring donations to The Good Geeks @ 667 Nantasket Avenue in Hull.
Thank you! <3Read More
In one month from today we leave for our Boston to California/Seattle Batten Disease Awareness Road Trip. We’re having some decals made for the minivan and will be armed with awareness bracelets and literature, hoping to raise awareness and research money along the way. I’ll be driving out to Cali then up to Seattle with all 4 kids and when we get to Seattle John will fly out and spend a few days with us up there and then we’ll drive home hitting up Niagra Falls on the way back.
We’re paying for the road trip costs ourselves but want to raise $7206 which equals $1 per mile for the trip as well as awareness for this disease. If you can contribute please mail a check to:
667 Nantasket Avenue
Hull, MA 02045
C/O Good Geeks
We are in the middle of completing our non-profit status so this tax dedictible. You can also paypal to email@example.com your donation. We currently have $56 raised! <3
This trip is a bucket list item, why not turn it into something more than that for all of the kids (Rachel included) suffering from this nasty disease.Read More
Here is the map of the trip we are taking, leaving on the afternoon of June 14th. The trip is 7,206 miles long and I am going to get some lettering on the minivan for the trip, bring lots of brochures and awareness bracelets for Batten Disease and try to solicit donations to the tune of $7206 (for each mile driven). We’ve filed our non-profit paperwork and will be donating the road trip donations entirely to Batten Disease Research (we are funding this trip out of our own pocket). Setting up a running tally towards to $7,206 goal on Teamrachel.com to keep track.
Rachel’s 12th birthday is next week (5/18) and we would like to have a birthday card contest. Send your best tactile birthday card to
- Rachel von Tungeln
35 N Street
Hull, MA 02045
- Or drop it off The Good Geeks
- Or hand it to her at school
With your name and email address on the back and Rachel’s top 3 picks will get a $10 Gift Certificate to Amazon.com via email.
Rachel’s 12th Birthday Tactile Card Contest closes on 5/18/12.Read More
We have sent in the paperwork to have the 2nd Annual Team Rachel Road Race on October 28th, 2012 with a 9am race start. Cannot wait!!!!!!!!!! I promised myself to send the letter in for approval before her birthday and that is coming up soon (May 18th).
Picture: Rachel with a starfish given to her by another blind person that she and her Granny ran into at the end of Hull, MARead More
Rachel had an appointment with her Neurologists last Thursday for her regular appointment. Rachel is having an increasingly difficult time falling asleep at night and we have added 10mg of melatonin and 300mg of neurontin. This in addition to all of her other pills and she is still not falling asleep until close to midnight every night. I’m exhausted, and my tiredness level has been increasing in the last year. Its not my thyroid or “sugars” – I think I’m just exhausted from taking care of my Rachel, work, husband and my 3 healthy kids. I wouldn’t trade them for the world but I know I need to do something so I can be the best Mom I can be.
I spoke to the 2nd – 8th Graders at St. Jerome School in Weymouth, Massachuetts. Its hard to say enough about the disease without saying too much. The kids were fantastic listeners and several came up to me afterwards asking if they could hug me. If that isn’t an advertisement for that school, I don’t know what is. It felt good to bring awareness to the disease and raise a little bit of money (the kids paid to dress in regular clothes) and some of the money is going to Batten Disease Research.
Last but not least, I traded in my Jeep for another minivan to make things easier for our big road trip this summer (to California and back) and Rachel is having a harder and harder time getting into things. It may be a minivan but there is nothing like buying a new car with 5 miles on it.Read More