Team Rachel 4 mile Road Race
Date: October 23 2011
Time: Registration at 8am, Race starts at 9am!
Location: Race starts at Hull High School, 180 Main Street in Hull, MA
Length: 4 mile Run, 2 Mile Walk
Cost: $25: 4 mile Run
$20: 2 mile Walk
We are holding our first annual 4 mile road race (2 mile walk) for Batten Disease Research in Hull, Massachusetts. All money raised through this race will be donated to Batten Disease Research. Please contact us (team@teamrachel.com) if you have the ability to volunteer and help us run the race *OR* if you would like to run/walk it you can click the link and register today!
Click here to register TODAY
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.
Please Let Becca know about the road race and organizing of it. She would love to volunteer her time and help you in anyway possible! I am happy to help too!
Can’t wait for the lemonade stand and count me in for donating water, lemonade mix, and of course, supplies for you all to enjoy Smore’s at night. Let me know what you need assistance with when you organize the road race- I’ll be honored to help out :0)
Hi Kate: I spoke to you awhile ago, my son Nick also has JNCL. He is 19 yrs. old and continues to attend Perkins School for the Blind. I would love to help you with the 5K race in Oct. and have our family participate in it. My friend Janet Gilmartin lives on Allerton Point so I am sure she will be interested as well. I was searching the web for information about CellCept because I am looking into the study for Nick. I wasn’t sure till I read this blog that Rachel had JNCL. I am glad to hear she is active in girl scouts and is doing so much on the bucket list. Lets talk soon. God Bless, Fran Curran
The road race is online!!!
OK what is my assigned job. Apart from taking Rachel. Let me know so I can start now. Mum xx