Rachel my snowboarder

Posted by in Batten Disease, Life, Rachel

rachel_snowboardFor the 4th day of spirit week at school (Olympic Day), I sent her in as a Gold Medalist Snowboard (complete with board and all). She won a prize and $5 to the book fair.  The smile on her face was priceless!

 

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Fresh bread by Rachel

Posted by in Food, Life, Rachel, School

Annalise and Rachel have done it again. Fresh bread!!!! Best homemade bread I have ever had and the house smells great!

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Rachel bakes!

Posted by in Life, Rachel

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!

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No road race this year

Posted by in Life

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.

xoxoxo

- Kat

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July 31st Paint for Team Rachel at Sea Dog!

Posted by in Batten Disease, Fundraising, Life, Rachel

paintAn 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!

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What an awesome Race!

What an awesome Race!

Posted by in Batten Disease, Life, road race

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!

HERE ARE THE RACE RESULTS

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The road race is on Sunday!

The road race is on Sunday!

Posted by in Batten Disease, Life

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-2012

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Rachel’s Walking

Posted by in Batten Disease, Life, road race


And a conversation about the road race and her Halloween costume!

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Rachel 12.5 Video taken 10/22/12

Posted by in Batten Disease, Life


Notice her speech and cognitive decline…. Just showing what Batten Disease is currently doing to Rachel.

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From the desk of Denise

From the desk of Denise

Posted by in Batten Disease, Life

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.

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