Erin Svare

Erin Svare's Fundraiser

I am running for my niece Addie! image

I am running for my niece Addie!

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$2,390 towards $1,500

I am excited to announce that I have signed up as a Charity Runner in the NYC United Airlines Half Marathon to support the Dup15q Alliance! Their mission is to provide family support, promote awareness, fund research, and provide targeted treatments for Dup15q Syndrome.

I will run with my sister Emily Field to support families affected by Dup15q Syndrome, especially my niece Addie. Addie is seven years old and loves her family, swimming, horseback riding, pouring water back and forth into cups and my tupperware cupboard! Addie gives the best hugs and knows what she wants, although it's not always easy to communicate it to us. With more funding, researchers will be able to learn more about this rare genetic syndrome and offer ways to better support Addie's needs in her everyday life.

Dup15q Syndrome is characterized by having an extra copy of a portion of chromosome 15 in the 11.2 – 13.1 region in combination with a number of symptoms that may include, hypotonia, epilepsy, cognitive delay, motor delays, autism, and similar facial features.

Emily and I run together throughout the year to spend time together, get outside, start the day with connection and movement, and to release stress. Together we will take on 13.1 miles of New York City streets on Sunday, March 20 for Addie and for thousands of other Dup15q families.

Please consider a donation to support Addie and other Dup15q families. Your donation will make a difference in Addie's life and others. On behalf of Emily, Jon and our entire family, we are grateful for the community around Addie!

Sincerely,

Erin