Denise Marie

Denise Marie's Fundraiser

2022 NYC Marathon: Running for Nina image

2022 NYC Marathon: Running for Nina

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$3,211 towards $3,000

Thanks so much for visiting my donation page! I am beyond excited to share that I, along with my husband David, will be participating in the 2022 TSC NYC Marathon as a charity runner. We are running to support the Dup15q Alliance and in honor of our daughter, Antonina. Many of you know (and some may not) that I ran the Chicago marathon in 2019 with the Danny Did Foundation in partnership with the Alliance. This year, the Dup15q Alliance has secured our very own team in the NYC Marathon, so we just couldn't pass up the opportunity to raise funds and awareness! The Alliance is incredibly important to our family as Antonina has Dup15q. Dup15q is a partial duplication of the 15th chromosome which for our daughter results in significant developmental challenges, features of Autism Spectrum Disorder, and sensory processing difficulties. This also puts her at high risk of developing seizure disorder. Antonina’s genetic anomaly is not inherited, which is an extremely rare occurrence! “Nina” (as she has come to call herself) is the strongest kid we know, working her tail off daily, almost minute by minute, to interact with her world, learn, move and express herself. Her personality shines through it all and she has taught us so much about love, patience and gratitude. We are better people thanks to her!

The amazing thing about the Dup15q Alliance is that it provides support for families like ours, and it promotes awareness, research, and targeted treatments for Dup15q Syndrome. We have found much comfort, guidance and community in the associated parent support group and would be lost without our Alliance family! It is with them that we troubleshoot new challenges, learn of new therapies, and give/provide feedback to each other as we navigate the complexities of life with Dup15q.

I will be taking on 26.2 miles through the 5 boroughs of New York City on November 6th, to support all families affected by Dup15q Syndrome. Please join me in supporting real change; change that has a direct and meaningful impact on my own family and the families of so many that face the everyday challenges of living with Dup15q.

No donation is too small and all donations are received with love and gratitude! Just a small donation will go a long way to helping me meet my goal for Dup15q Alliance.

To learn more about dup15q syndrome visit: www.dup15q.org