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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Batten Disease: Rachel then and now

Batten Disease: Rachel then and now

Posted by in Batten Disease, Life

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!

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Road Race Registration is Live!

Road Race Registration is Live!

Posted by in Batten Disease, Life, Rachel

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 team@teamrachel.com 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.

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And we’re home!

And we’re home!

Posted by in Batten Disease, Life, Rachel

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!!!!!!

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Auntie Julie

Auntie Julie

Posted by in Batten Disease, Life, Road Trip

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! <3

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Hooters!

Hooters!

Posted by in Batten Disease, Life, Road Trip

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).

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Kids in Trinity National Forest

Kids in Trinity National Forest

Posted by in Batten Disease, Life, Road Trip

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!

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6/25/12 Status Update

6/25/12 Status Update

Posted by in Colorado, Life, Road Trip

We are currently in Colorado Springs, staying just one more night before we head west. Colorado has been riddled with multiple forest fires because of the extreme heat and lack of rain, dry lightning and a suspected arsonist. We were staying at the beautiful Garden of the Gods Campground but because of the high heat and the eventual smoke and nearby evacuations I moved the kids and I to a hotel in the eastern part of Colorado Springs (near Peterson Air Force Base).

Today we are having lunch with some of my favorite people then we’ll come back here and do some swimming and tonight we are going to a Heather’s house of pets (haha Heather, I love you) and a simple, PASTA dinner. Pasta is one thing my kids really miss on the road.

Tomorrow morning, before the roosters come out to crow, we are driving up through Denver, through Wyoming and staying the night in Utah. After one night in Utah we are driving to Eureka California and spending two nights there. We can’t wait to get to California, visit the pacific ocean and see / feel the Redwood Forest. That will effectively cross 3 more items off of our bucket list…

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Horseback Riding

Horseback Riding

Posted by in Batten Disease, Kat, Life, Road Trip

Another Batten mom named Cheri arranged for Rachel and the kids to go horseback riding at the Colorado Springs Therapeutic Riding Center at the Mark Reyner Stables. When we arrived they were waiting and I was a little hesitant at first because most people don’t get Rachel, especially people who don’t know her. About 5 minutes into our session with the ladies and Bubba the horse I realized I could take a deep breath because they are very experienced with helping special needs kids with riding. One lady (Corey) led Rachel and Bubba and Nancy and her daughter walked on either side of Rachel and helped her with balance. I was most impressed with their handicap accessibility and the ramp they had to help kids mount the horses.

It was a wonderful time for all of the kids and a memory I will treasure forever.

Here is a link to their website: http://markreynerstables.com/

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Old friends at an old hang out…

Old friends at an old hang out…

Posted by in Batten Disease, Kat, Life, Rachel, Road Trip

Today we met up with Heather, Nick and Sky (her boys) at the Omlette Parlour. Great food, even better company!

Gotta love a place that serves up good, vegetarian omlettes! Check it out: http://www.co-spgs-omeletteparlor.com/

Picture: Heather and her son Nick

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