Annalise and Rachel have done it again. Fresh bread!!!! Best homemade bread I have ever had and the house smells great!Read More
With the help of Rachel’s brilliant TVI (Teacher of the Visually Impaired), Rachel is starting to cook in school and bring home delicious treats to bake in our oven.
Our home smells amazing, I am getting fatter and Rachel has a huge self esteem boost! This is week 1: apple pie!Read More
Hello folks. I just wanted to officially announce on Rachel’s website that we won’t be holding the race this year. Between Rachel’s worsening condition and our family dynamic changing I just don’t have the energy or time to invest in the race this year. My number one priority in life is to make sure all 4 of my children are taken care of to my best ability.
I know lots of people are bummed about this but in my heart I know its the right thing to do.
- KatRead More
An oldie but a goodie, dear friend Geri Calos has organized a night of painting and is donating $5 from each registration to Batten Disease Research! Please consider signing up if you can, this is located at Sea Dog Brew Pub in Hull, Massachusetts! Click to register!Read More
Between the 428 registered runners and walkers plus all of the gracious volunteers and Aquarion Water who were passing out reusable and recyclable water bottles, we had over 450 people! About an hour after the race, costume contest and raffle was over it started to rain. I couldn’t be more thankful to Hurricane Sandy for holding out and not ruining Rachel’s special day.
We have over $22,000 in the bank that we are going to donate to research once the donations stop flowing in! Thank you so much to our WONDERFUL friends and family and the community of Hull, Massachusetts for supporting our second race. It was an incredible day!Read More
I can’t wait to get ‘er done and hold this road race. Being a Race Director is very much like organizing your own wedding, except in my case, much more sad and depressing. Years from now when she has passed I’ll have all the time in the world to be depressed and lament on how much I miss her but not today. Today calls for action, it calls for determination, it calls for pushing down sad feelings and raising some money for research.
The race is on Sunday 10/28/12 and if you can’t attend but want to contribute there is a donate button on the right hand side of this page (scroll down). Thank you!
Register Online: http://www.active.com/running/hull-ma/team-rachel-race-4-a-cure-2012Read More
Notice her speech and cognitive decline…. Just showing what Batten Disease is currently doing to Rachel.
This was written by a dear friend, Denise about Rachel’s Mom. Thank you Denise for sharing this with us and giving permission to share it with the world!
Last year Kat and myself, a scientist, had three amazing opportunities thanks to the funds raised last October by TeamRachel. It started out so simple. Two Moms meeting at the first day of preschool dropping our sons off at Seaside Montessori. We had never met though Kat was someone I knew was like nobody I had never met.
Upfront and to the point with the ability to make me blush but always in this amazing fun loving way we took a walk on a cold September day and she told me about Rachel and Battens Disease and life would never be the same.
A month later an amazing TeamRachel Race occurred and a month after that we were meeting at my house with an expert in the field of gene therapy over pizza and beer and a whiteboard. A month after that, grabbing a bagel and coffee from Weinberrgers we set off to Mass General in Boston to meet with scientists who study the Juvenile form of Batten Disease to learn of their latest research. Two months later we met with a top neuroscientist from Genzyme and also an expert on gene therapy in the brain, who discussed with us his experience with a clinical trial for the Infantile Batten Disease and our mouths dropped open as he explained how he saw areas of improvements to gene therapy for Infantile Batten Disease and discussed how it is his wish to piggyback this knowledge with a Juvenile Batten Disease clinical trial.
And all the while I watched this brilliant man who reminded us of a nice Einstein humbled by Kat, Mom of Rachel. Her knowledge, her questions, her ability to make everything feel real. Her presence cannot be ignored nor can her ability to bridge the people who can change the world with the families who need them. I knew when we left that day, this brilliant scientist who reminded us of a nice Einstein would be thinking a lot of Rachel and Kat
Months later the scientists from Mass General and the scientist from Genzyme came together for the first time (academic experts in Juvenile Batten Disease with industry gene therapy experts) meeting to discuss a potential collaboration for Juvenile Batten Disease. This is where we are now. Know this race makes a difference. Know it takes ordinary people to start doing the extraordinary.
Please consider supporting Team Rachel Race 4 A Cure on October 28th, 2012. A donation can be made by clicking the “Make a Donation” button on the right hand side of this page.
Thank you! Donations are tax deductible!Read More
We have gotten the Road Race registration live on Active.com and we’d like you to register! The road race is a 4 mile run or 2 mile walk from Hull High School in Hull, Massachusetts with a Halloween Theme and Costume Contest. Please email firstname.lastname@example.org with questions!
Link to Registration: http://www.active.com/page/event_details.htm?event_id=2049058&cmp=1745
All proceeds are being donated to Massachusetts General Center for Human Genetic Research for Juvenile Batten Disease Research! This race is in honor of Rachel, a really lovely little girl who is unaware that she dying from Juvenile Batten Disease all the while her Mom (me) and her family are trying to make sure that she gets to squeeze as much fun out of the time she does have on this earth. She was born completely perfect and since the age of about 6 she has gone completely blind, lost a great deal of her brain power and is now losing the abilities to walk and speak.
All we want from this race is to fund research of this disease to prevent another parent from having to lose their child. Thank you! <3
Photo Caption: Rachel and newborn Charlotte having a cuddle.Read More
On the way home from Seattle we stopped in at Uncle Ben and Aunt Debbie’s house and had a little family reunion where me / John and the kids got to meet his Uncles and Aunts!!! We had an awesome time and wish we lived closer!
We also stopped at the Mall of America in our travels home and spent the afternoon at their indoor amusement park and had the BEST time. Air-conditioned amusement parks are definitely my kind of place! This picture is John and a few of the kids on one of the rides.
We had a great trip and I am so glad we did it!!!!!!Read More
John’s mother is one of 13 and this is beautiful, smiling, radiant Auntie Julie who is 12 of 13. We drove into Seattle to have dinner with her and had a great time! Julie (my Juliebean) was with us as well! <3Read More
When we got to Washington the kids were still looking for “wings” since the “Chinese Food” place we went to didn’t serve chicken wings (or beef on a stick for that matter). We were driving down the highway and I saw Hooters (the place where the ladies don’t wear a lot of clothes but are known for their wings) and we went! The staff in the Tacoma Hooters was extremely helpful and responsive, the merlot and salad were delcious as was the food the kids got (wings, fried pickles and potato logs). When we were getting ready to leave the staff asked us if we wanted a picture and I think you can tell by Boston’s face he was thrilled! <3
London was at Hooters with us but didn’t want to be in the picture (and I try not to be “that parent” and force them into the picture).Read More
We have arrived in Eureka, California and are staying here for 2 days (well, 2 nights). On the way here from NV we had a pretty windy-roaded trip and it was slow moving once we crossed into California and left highway 80. Boston got car sick when we were only 20 minutes from the hotel, that was fun to clean up.
Today we are hanging out in Eureka which is a a beach town in northern California. It reminds me a lot of Florida and a New England beach town. Its funny how all beach towns kind of look the same.
Last night at dinner a family came over to our table and asked us about their journey. After a nice chat with a family from Connecticut, they donated $50 to Team Rachel!Read More