It has been a busy few months here at the A-T Children’s Project! Between not one but two big Disney race fundraising weekends, to recruiting for the new A-T Biomarker Development Initiative, to opening registration for A-T families’ spring fundraising events, amazing progress is happening on all fronts. One of the highlights was a first for the A-TCP – a tattoo artist raised over $1,000 by offering a flash sale, but more on that in a minute.

Amidst this flurry of activity, January kicked off with an exciting race weekend at Disney World in Orlando. Over 200 people woke up (races started at 5 am!), laced up and showed up for A-T. Each participant raised hundreds, and sometimes even thousands of dollars, for the A-T Children’s Project. Special shout-outs go to Team Monkey Misfits led by Ron Combs who fundraised with cryptocurrency and coast-to-coaster Scott Brady and Ron Balroop who participated in the Disney World races AND the Disneyland races with the A-T CureTeam! Many others showed their support as ‘Screaming Fans’ by fundraising for the A-TCP without running a race.

As part of the festivities, our traditional pasta party on Saturday night celebrated the incredible funds raised for A-T research. There were many new faces this year who we welcomed with open arms! Team Nikki was a newcomer and they wowed us with their passion and heart – not to mention their innovative fundraising approach!

Team Nikki at Disney World!

Nikki was diagnosed with mild A-T last year at the age of 36. Her diagnostic journey was different than most – her diagnosis came as a result of genetic testing she had done following her diagnosis of breast cancer. She has a mild form of A-T, which means that her body makes some ATM protein. This is why her symptoms are different than those typically experienced by others with A-T. We are thrilled to report that Nikki is now in remission! She embodies resilience and is a proud A-T warrior who embraces the A-T community wholeheartedly.

Team Nikki raised almost $6,000 for the A-T Children’s Project at Disney this year. Her brother, Jason, raised over $1,000 through a unique fundraising tactic – a tattoo flash sale. Jason is a successful tattoo artist, known for his illustrative style and flair for color. His creative tattoo creations took him to the finales on Ink Master twice (seasons 12 and 14!). He leveraged his social media presence to promote the flash sale and recruited additional support from friends Scott and Lexie. Reflecting on the fundraiser, Jason shares, “My clients love when I do the flash sales. I always get a handful of repeat offenders for those but I always see new faces for these flash sales too. This time was no exception. Plus, seeing some of my old clients I haven’t seen in years pop back in to get something was very rewarding too.” Jason’s fundraiser is a powerful example of how you can put your talents to work toward a cure!

Joining the A-T CureTeam at Disney World this year for the pasta party was the start of a new family tradition for Nikki and her family. “The A-T community is so uplifting and overwhelmingly positive. I had no clue what to expect,” Jason recalls, “but I was taken back by the awesomeness of what was going on. . . I got to see that I was now a part of a much bigger thing!” 

Their commitment doesn’t end there. Looking ahead, Jason expresses his eagerness to continue supporting the A-T Children’s Project, stating, “We started more than one new tradition because of my sister. It’s a beautiful thing. So y’all gained a new fundraiser for life outta me!”

We extend our heartfelt thanks to Jason, Nikki, their dad and Nikki’s husband for their unwavering dedication. Together, we will continue to raise the bar, increase awareness, and work towards a cure for A-T!

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