McCarthy Meet-up

McCarthy Meet-up

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

We went out to lunch with dear friends at Poor Richards in downtown Colorado Springs. Vegan, gluten free or anything else you could possibly want. It was the best food I’ve had in a very long time!

Check out their website: http://www.poorrichardsdowntown.com/

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Team Rachel with another Batten Mom

Team Rachel with another Batten Mom

Posted by in Batten Disease, Life, Road Trip

Sadly, her son passed away last year but that doesn’t stop us Batten Families from sticking together. Thank you to Cheri who treated us to lunch this week! <3

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Team Rachel at GOG

Team Rachel at GOG

Posted by in Batten Disease, Life, Road Trip

Team Rachel is safely in Colorado Springs Colorado and had the pleasure of visiting Garden of the Gods yesterday! Today we’ve been hiding out because of the record temperatures (Rachel and the clan don’t do well in the heat).

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Day 2 Road Trip

Day 2 Road Trip

Posted by in Life, Road Trip

Yesterday we left Hull Massachusetts and drove through Connecticut, New York, New Jersey, Pennsylvania, West virginia and into Ohio. This morning we’ll be stopping by the Batten Disease Support & Research Association to say hello and meet the staff then will get back on the road and head to Kansas City where we’ll stay in another hotel.

While I was bringing the kids and a load of our stuff into the hotel I met two truckers that are staying across the hall, one of them was born and raised in Brockton, Massachusetts. Small world, right?

Today we’ll drive through Ohio, Indiana, Illinois and Missouri. <3

Picture: Kansas City at night

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Team Rachel is mobile

Team Rachel is mobile

Posted by in Life

Headed to Ohio from Boston today!!

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Day 2 of Lemonade Stand

Day 2 of Lemonade Stand

Posted by in Life

Today starts day 2 of the Team Rachel Lemonade Stand from 12pm – 8pm at 35 N Street in Hull. If you cannot physically attend our stand but would like to buy a glass or two online, please click the link below that says “donate.”

We raised over $2,000 dollars yesterday (Day 1).

All money is being donated to Batten Disease Research at Massachusetts General Hospital’s Center for Human Genetic Research.





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Lemonade Stand 1 of 2

Lemonade Stand 1 of 2

Posted by in Batten Disease, Fundraiser, Fundraising, Life

Today starts day 1 of the Team Rachel Lemonade Stand from 3pm – 8pm at 35 N Street in Hull. If you cannot physically attend our stand but would like to buy a glass or two online, please click the link below that says “donate.”

All money is being donated to Batten Disease Research at Massachusetts General Hospital’s Center for Human Genetic Research.





The featured image for this post is a satellite map of Hull, Massachusetts.

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News Feature!

News Feature!

Posted by in Fundraiser, Fundraising, Life

Yesterday Team Rachel and our Road Trip 4 A Cure was featured in the Hull Times!!! We are on the FRONT PAGE and between the cover and the remainder of the story, both a picture of Rachel and our lettered minivan were included!

The best part of this week being our week for feature is that every household in our town received a complimentary copy of the Hull Times because it included the summer guide. We are about to hit $1000 in donations plus several more are promised and I am bubbling over with support and kind words from people. That has been one good thing for me personally to come out of this journey is that I spent years feeling alone and wishing I could meet people and have friends.

I took myself out to lunch yesterday (first time ever) after Rachel declined the invitation to leave school early (I had volunteered all morning and was tired and hungry so there was no hope I was going to actually eat something healthy unless it was made for me). When I arrived at Barefoot Bobs I sat at the bar and within 60 seconds had ordered a house salad on greens with a margarita and was then invited sit with new found friends (husband and wife who live on my street) because they saw I was alone.

Yesterday I realized I’ll never feel alone ever again. Having kids, having Rachel and this journey as horrible and unimaginable as it is watching your child slip away, I am grateful to be walking in my shoes with such amazing people in my life (near and far).

Please come to our lemonade stand on Monday (3-8) and Tuesday (12-8). 35 N Street in Hull!

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10 Days until we leave

10 Days until we leave

Posted by in Batten Disease, Life

Finishing up the plans for our Lemonade stand on June 11th (7 days away). This is the banner we are having printed to hold up at the end of our street. So excited! We raised $225 over the weekend and are more than halfway to our first thousand!

Thinking of moving the lemonade stand time up. Currently I have it set from 3-8 but with all thats going on and school letting out for the summer at 11:45am I think I might start it when the kids come home and run the stand until dark (or 8 depending on the traffic). Not more work for me to start it sooner…. What do you think?

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Posted by in Batten Disease, Life, Memorial Day

We have already raised over $400 towards our $7206 goal to fund research for Batten Disease. The kids are excited, Rachel keeps on trying to convince me that flying would be so much easier (no shit, love) but that wouldn’t draw attention to her, to the disease, to the lack of treatments. The minivan we just bought is being lettered tomorrow with Team Rachel’s info all over it to draw attention to us. I personally hate attention, the attention of this disease, the admiration of doing a good job with Rachel and fundraising (etc), but I’ll grin and bear it every last step of the way for this kid, for all of these kids. Can’t wait to hit the road with our business cards, bracelets, pamphlets and our brightly lettered van to get more money into the hands of the people who are tirelessly researching to cure Batten Disease and several other genetic diseases just like it. If we can figure out one, it will give us answers to others. I won’t quit this fight until the day my heart stops beating. Please donate if you can and spread the word if you are able.

Love,

Kat (Rachel’s Mom)

Picture: Rachel and Julie at the end of walking in Hull’s Memorial Day Parade.

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