Help Needed!
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
Updated Bucket List
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! <3
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We leave in a month!
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:
Team Rachel
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 team@teamrachel.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.
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East Coast – West Coast Road Trip for Research!
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.
Thank you!
Birthday Card Contest
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. 
Team Rachel Road Race!
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).
Click here to RSVP to the Road Race on Facebook
Picture: Rachel with a starfish given to her by another blind person that she and her Granny ran into at the end of Hull, MA
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Things are moving along
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.
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Happy Easter
Rachel goes to Friendly’s every Wednesday night with her PCA Carol and this week instead of the “Balloon Man” they had a white easter bunny. I imagine that the easter bunny doesn’t speak but made an exception for Rachel (who is blind if you’re new here) and Rachel loudly exclaimed: “You’re a girl!!!!!”
Apparently the other parents were not pleased.
Score one for Rachel!
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The Splits
As I’ve just posted on www.mrskatvon.com I wanted to announce it here that I am going to be splitting up the Blog and separating them into two:
Team Rachel: www.teamrachel.com (For Rachel’s medical updates, Batten Disease Info and Fundraising)
MrsKatvon: www.mrskatvon.com (My personal blog of the last 12ish years to include family life, bucketlists, pictures and ROAD TRIPS!).
You are officially invited to read both.
Social media…. Cause for worry?
Way back when before social media websites like facebook and twitter became popular people used to belong to forums and they people used to BLOG. And I mean BLOG! Huge followings, tons of entries and lots of reciprocation of ideas and support and it was a community. Kind of like having someone over for coffee. They’d have you over to their house one day and you would invite them into your home the next.
I miss how popular blogging used to be (and I’m sure some of you might argue that blogging is still popular) and I miss how close I used to feel with those that I blogged with. I guess the “fix” to my feeling of worry and sadness is to get back into blogging and rejoin the blogging movement. I’ve got an interesting life and although facebook / twitter is instant gratification we all worry in the back of our minds if and when those sites will be wiped out and we’ll lose those personal exchanges, those pictures and the connection to our “friends” and “followers” forever. You don’t have that worry with blogging. I don’t like to worry, I think its a total waste of time. So I shall stop worrying and do something about this.
I will continue to blog. I shall start with this entry. I shall not worry because it is futile.
(Now I’ll go share this on facebook so someone will read it. lol)
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2.29.12 is Rare Disease Day!
Today is rare disease day. Please take 3 minutes of your time today and submit a letter to your local and national elected officials and tell them that rare diseases are important to you. If this were your child and you asked me to submit a letter, I would submit several. You never really realize how “frequent” rare diseases are until its your child who gets diagnosed with one. Thank you!
http://rarediseaseday.us/take-action-now/handprints-on-the-hill/
Climbing a Rock Wall
Took this video of Rachel over the weekend as she was determined to be able to climb the rock wall on our swing set again.
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Valentines Day 2006
It was about this time 6 years ago that I found out that I was pregnant again after just having 2 babies back to back. What a rough time that was in my life but I am so glad I got through it and have this crazy life with 3 kids really close together and Miss Rachel. Of course I wish things were different, that Rachel was genetically normal, but as I repeat to people at least once a day… you can’t pick your deck of cards, you simply have to play with the cards you have (good and bad).
Picture: This is London Jack as a baby. He is such a good boy and I must make more effort to give him the attention he often gets looked over for because he is so quiet and amenable. This entry is to remind myself to do something special with him before the end of the week.
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Happy Valentines Day
Happy to report that after a weekend of the girls puking and Rachel having a seizure on Monday at 4am, both girls are well and back to school (and Rachel back on her meds!). Most parents don’t think about the vomit virus, more than feeling bad that their kiddos are sick and how gross cleaning up puke is. And while I agree that it sucks to clean up puke and I hate when my kids feel sick, getting the vomit virus is more than that. When Rachel cannot take her meds we run the risk of her having a seizure and that is exactly what happened this weekend. With every grand mal seizure another piece of Rachel is lost, a piece that will never come back. :(
In brighter news I attended a Batten Disease Fundraiser on Saturday Night in Swansea, Massachusetts that had about 350 people in a beautiful event hall with dinner, dancing and a comedian. At the end of dinner, before the comedian started Moe (a father of 2 CLN7 boys) and myself gave brief talks and at the end of my talk I presented Moe and his wife Jean with the $25,000 that we raised through Team Rachel Road Race in October 2011. Jean and Moe will be giving the money to research because they have a registered non-profit and can donate directly to Dr Cotman who researches Batten Disease at Mass General Hospital in Boston (which is the same hospital where Rachel receives Batten Disease care).
At this point I am looking into planning a Batten Disease Dinner / Dance / Comedian Fundraiser up here for hopefully a Saturday night in May. If you are interested in helping plan or know of a venue that can hold at least 200 people… get in touch. :)
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TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
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