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
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!Read More
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.Read More
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)Read More
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!Read More
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.Read More