Gene-Therapy Trial for Kat Lewis

$3,660 of $3,700 goal

Raised by 47 people in 7 months
Created July 15, 2018
If you've ever attended a music festival in the United States, chances are good that you've seen my best friend, Kat, stage managing.
She is an amazing person and friend who is both private and humble. This campaign and her story are not something she wanted to make public, but I insisted.  Kat is always helping others, especially musicians, and right now she needs OUR help.  

Here is the story: Kat was amazing at her job and she loved it. Unfortunately, (after much resistance), she finally had to give it up last year. Kat was diagnosed with an extremely rare degenerative bone disease called X-linked Hypophosphatemic Rickets (XLH, for short) just after her second birthday. Her situation isn't genetic so the likelihood of her getting "this shit" (her words) was 1/200,000,000 live births. 

The gist of XLH is that her body cannot process Vitamin D, leaving her bones brittle and broken without hope of healing, and it is excruciatingly painful. Kat was forced to give up the career she loved so much, and one that financially supported her, due to the inescapable pain her disease caused and how easily she breaks major bones. Can you even imagine that?

On a positive note, last Tuesday Kat was chosen to begin a gene-therapy trial for a wonder drug that just might allow her to lead a normal life in as little as two years! We're talking out of pain and off of pain medications, and with bones that will finally heal and also not break in the first damn place (her words, girl has a great sense of humor), and a chance to get back to a regular life.

Here's the catch: each shot of Crysvita, the gene-editing drug, (received each month), costs $18k. She has a grant that covers the $18k but she's got another $3700 that she's responsible for a four times per year. This drug is a life changer and all of those that love her want to make this happen.  Kat is also financially recovering from expenses involved with recently moving from Chicago to Connecticut to be closer to Yale in order to be considered for this gene-therapy trial.

That being said, I know times are tough but anything you can offer helps. Has she given you or your band free advice/help? Has she booked you on an amazing bill? Has she worked with your band at a festival and you had a great time? Do you know her, Maggie (the dog), and Snacks (the cat) personally? Chances are you answered yes to one of these questions and now it is time to give back. Let's make this happen for a very deserving person!

Thank you all.
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Hi Team,
Happy 2019!!
Quick update:
Physically doing better than I have in years - my pain has been reduced by damn-near a third from what it was just two months ago, which has been an unbelievable game-changer. The fatigue is still hanging on a bit but in just six months, I couldn't ask for more!!
Financially in the toilet: $4900 in medical debt so far, which is waaaaay better than it could be because of all of you but, nonetheless, scary.
I've got two of the bands I work for getting ready to start their tours so I'm trying to keep up with everything. It took me 40 times longer to book these tours than anything I'd ever booked but, yay, bands are happy so I can nap!
Haven't killed my roommates/parents yet so that's a win, huh?!
Hope you're all having a great 2019 so far!
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6 months in, fam!

It's been a weird 6 months filled with truly bizarre side-effects and lots of support from my friends, family, and Oliver.

I've FINALLY started seeing some positive stuff - specifically in my hands, fingers, and toes. I was told that little bones would show improvement first and I'll be damned!

Thank you for all of your support; financial, emotional, those that have randomly showed up from NYC to take Maggie for walks. I owe you everything and I really hope to see you at SubT on 11/24. Ollie & I are making the trip out!

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Hello, my dear friends:
Once again, thank you ever so much for helping me finance this beast of a genetic makeover; I cannot begin to accurately thank you so I'll just say thank you and I love you.
Treatment #3 is in the books. I'm halfway to the point where the docs tell me the body gives up fighting the stuff and goes along with the DNA change - thus ending these side effects that have made me feel like an absolute dumpster fire for the last 3 months.
I'm staying positive and really looking forward to feeling up to visitors and/or visits.
Love you, thank you, and your help has truly meant the world to me.
Your genetically modified friend,
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$3,660 of $3,700 goal

Raised by 47 people in 7 months
Created July 15, 2018
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