Today starts day 2 of the Team Rachel Lemonade Stand from 12pm – 8pm at 35 N Street in Hull. If you cannot physically attend our stand but would like to buy a glass or two online, please click the link below that says “donate.”
We raised over $2,000 dollars yesterday (Day 1).
All money is being donated to Batten Disease Research at Massachusetts General Hospital’s Center for Human Genetic Research.Read More
Today starts day 1 of the Team Rachel Lemonade Stand from 3pm – 8pm at 35 N Street in Hull. If you cannot physically attend our stand but would like to buy a glass or two online, please click the link below that says “donate.”
All money is being donated to Batten Disease Research at Massachusetts General Hospital’s Center for Human Genetic Research.
The featured image for this post is a satellite map of Hull, Massachusetts.Read More
Yesterday Team Rachel and our Road Trip 4 A Cure was featured in the Hull Times!!! We are on the FRONT PAGE and between the cover and the remainder of the story, both a picture of Rachel and our lettered minivan were included!
The best part of this week being our week for feature is that every household in our town received a complimentary copy of the Hull Times because it included the summer guide. We are about to hit $1000 in donations plus several more are promised and I am bubbling over with support and kind words from people. That has been one good thing for me personally to come out of this journey is that I spent years feeling alone and wishing I could meet people and have friends.
I took myself out to lunch yesterday (first time ever) after Rachel declined the invitation to leave school early (I had volunteered all morning and was tired and hungry so there was no hope I was going to actually eat something healthy unless it was made for me). When I arrived at Barefoot Bobs I sat at the bar and within 60 seconds had ordered a house salad on greens with a margarita and was then invited sit with new found friends (husband and wife who live on my street) because they saw I was alone.
Yesterday I realized I’ll never feel alone ever again. Having kids, having Rachel and this journey as horrible and unimaginable as it is watching your child slip away, I am grateful to be walking in my shoes with such amazing people in my life (near and far).
Please come to our lemonade stand on Monday (3-8) and Tuesday (12-8). 35 N Street in Hull!Read More
Finishing up the plans for our Lemonade stand on June 11th (7 days away). This is the banner we are having printed to hold up at the end of our street. So excited! We raised $225 over the weekend and are more than halfway to our first thousand!
Thinking of moving the lemonade stand time up. Currently I have it set from 3-8 but with all thats going on and school letting out for the summer at 11:45am I think I might start it when the kids come home and run the stand until dark (or 8 depending on the traffic). Not more work for me to start it sooner…. What do you think?Read More
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: email@example.com
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