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Road Trip for Research!
GOAL: $7206 ($1 per mile)
$226 Raised to date
Tax ID# 45-3078380
Bucket List
Eastcoast / Westcoast Road Trip!
Visit Redwood Forest
Swim in the Pacific Ocean
Meet Izzy and Elly
See Seattle Fish Market
Organize 2nd Batten Road Race
Ride a Camel
Go to England
Visit Niagra Falls
Go to Mall of America
See the Flying W Christmas Show
Be in JNCL Cellcept Drug Trial
Go Kayaking
Spend the weekend on a boat
Organize a Batten Road Race
Go Geocaching
Go to LegoLand
Drive an amphibious vehicle
Ride Codzilla in Boston Harbor
See a N.E. Patriots Game
Go to Santa's Workshop (CO)
Milk a Cow
Go Camping
Go Jet Skiing
Visit top of Pikes Peak
Visit the Royal Gorge
Go on the Cog Railway
Go to Disney World
Visit an Alpaca Farm
Collect Fresh Eggs
Own a Home again
Cruise to Bermuda
Go to Canobie Lake Park
Go Fishing (Rachel)
Ride a Train
Go Lobstering
Go to Santa's Village (NH)
Go to Storyland
Feed Santa's Reindeers
Things that are in progress are in have a * before it. If you think you might be able to help us experience another item on the list, please email me directly. Thank you.
2012 Road Race
Date: Sunday, October 28th
Time: 9:00am Race Start
Location: Hull High School
180 Main Street
Hull MA 02045
Stay tuned for more information!
Proceeds will be donated to Batten Disease Research at Massachusetts General Hospital.
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.
…..mother or 3……my 7 year old son has just been diagnosed with JNCL. I struggle to form a thought, let alone breathe….we found out 2 weeks ago and I haven’t taken a breath since. How is this explainable to a child that hasn’t been given the opportunity to experience life? And his older brother….and baby sister.
It’s been a year since I can remember my baby having a real sense of normalcy.
Although there are frequent, momentary lapses of composure…I am his mother and I’ll be damned before
I lay down and let the diagnosis define
our life(s). Not without 1 hell of a fight.
I’m in need of guidance and ass kicking support….
Kat
Continued from above….
Kat, any guidance you can offer…..I’d be forever in your debt.