Joined July 2017
164 Photos and videos
22 Apr 2025
Save the Date for our 5th Annual A Cure for Charlie Pickleball Tournament. Registration and sponsorship details coming soon. #ACureforCharlie #RareDisease #kansascity #giveback #pickleball @ChickenNPickle @SLC6A1_Connect
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6 Mar 2025
This right here sends me into a deep state of hopelessness. The last week I have been searching for educational options for Charlie. And let me tell you, they are already bleak. The system is already telling me it’s time to give up on my 7 year old. He’s 7, this is cruel!!!
6 Mar 2025
NEW: The White House has pulled the expected Thursday signing of the executive order to dismantle the Department of Education, sources told ABC News. abcnews.link/gGDDGWm
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8 Feb 2025
.@repcleaver @senhawleypress @SenEricSchmitt Medicaid is a lifeline! People with disabilities rely on Medicaid services to support them in their daily lives. But about 711k people are waiting for Medicaid services. We need MORE funding, not less. #ProtectMedicaid and save lives!
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13 Dec 2024
Amazing to see our house getting some love. Addie would flip if @taylorswift13 saw this.
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22 Aug 2024
Charlie was just 4 mo old when we knew something was wrong. It took a 1.5 yrs to finally get answers on what was wrong w/ our little boy. Today is 5 years from receiving Charlie’s diagnosis of #SLC6A1. I didn’t come this far to only come this far. #rare #cure #kids
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20 Aug 2024
#TurningLemonsIntoLemonade 1. Post a video of yourself sucking on a lemon slice trying not to make a funny face, if you make a face, you donate $10. 2. Donate here: classy.org/team/584853 3. Challenge: Tag 2 friends in your post @LNEagleVB you’re up!!!
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26 Jan 2024
AFC Championship Squares Time. $20 per square and a chance to win one of these amazing prizes from @kendrascott, @TitosVodka, @overlandparkscheels, Dots Tee’s and @kellyswestportinn! docs.google.com/spreadsheets… All proceeds go directly to #acureforcharlie Let’s go @chiefs.
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14 Dec 2023
Don’t forgot today and tomorrow anyone who shops online at @KendraScott & uses this code will benefit #acureforcharlie. SLC6A1 Connect gets 20% back. We are also hosting an in person event tonight at the KC plaza store from 5-7. Please join us - KendraScott.com
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12 Dec 2023
Two things at once?!? @tkelce Now you can finish that shopping list and help us out. Come in to the @KendraScott location on the plaza in #KC this Thursday or shop online Thursday & Friday and 20% of sales will be donated back to #ACureforCharlie and #SLC6A1 research.
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12 Dec 2023
Come see our house @tkelce and @taylorswift13. Our worlds collided when you two started dating so we had to spice up our lights for you. #Swifties live here! #kansascity #brookside
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5 Nov 2023
Cheering on our @Chiefs, meanwhile Charlie’s odds are on the black and white team. @NFL @nflnetwork @kcwolf #germany #nflgermany #ACureforCharlie
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25 Sep 2023
Mother chiefs Travis Kelce = best day ever!!!! @taylorswift13 @tkelce @KansasCity @TheChiefsWire @Chiefs
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15 Sep 2023
Our auction trips this year are incredible, truly some of the most gorgeous places on earth. m.charityauctionstoday.com/m… Trips are sold through charity booster, they have amazing reviews and give back to nonprofits like ours. #ACureforCharlie #Iphone15 #Travel
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14 Sep 2023
A Cure for Charlie Pickleball Tournament 2023 Auction is live. Lots of trips, #KC staycations, gift certificates and more available here. app.charityauctionstoday.com…
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