Our Story

12 (mostly) strangers, connected by the internet, picked to live in a van for 36 hours and run 200+ miles…  
Sounds like the tagline of the Real World, right?  

In April of 2015, Katie Chiet approached Michelle Breedlove Sells, then Executive Director of the Dempster Family Foundation, with an idea she’d seen – get a team of 12 runners together to complete a Ragnar Relay and use it to raise money for a charity. Michelle told her to come back when she found 11 other people willing to take on the challenge. She had already found Kate Wagner through Instagram and together they recruited the rest of the team via connections they had made in Facebook 22q communities. Nine days after the initial phone call with the DFF, we were a go.

On October 2-3, 2015, our team of 12 runners tackled the Ragnar Relay Washington DC, a relay race from Cumberland, Maryland to Washington DC.  We all had something in common – we either have or know a child with 22q11.2 deletion syndrome.  

That race started a movement. These strangers developed a bond strengthened by the love we have for our children. What we thought would be a one-and-done type event became a crusade of sorts. These moms, dads, uncles, aunts, siblings, grandparents, and friends wanted to do more; we wanted to connect with more people, raise more awareness, and donate more money to an organization that would help children like ours.

Ragnar works like this: Each participant runs three times, with each leg ranging between 2-14 miles and varying in difficulty.  While one person is running, the rest of the team is on support duty in the race van.  Our goal is simple.  Run day and night to raise awareness for VCFS/DiGeorge Syndrome/22q11.2 deletion syndrome.

We run:

  • because at some point, we found out our children had a chromosomal abnormality none of us had even heard of prior to diagnosis
  • because in addition to being mothers, fathers, aunts, uncles, and friends, we have had to be warriors, advocates, teachers, occupational therapists, physical therapists, and speech therapists
  • because our children have had surgeries to correct palatal defects and congenital heart defects, remove laryngeal webs, and place feeding tubes and trachs
  • because our children require help from therapists to perform tasks other parents and children take for granted
  • because we are inspired by those who cannot
  • because 22q and those affected deserve awareness and recognition
  • because we love our children with 22q, we are powered by their strength, courage, and warrior spirits
  • because TOGETHER we can make a difference

For 3 years (2017-2019), #werun22q raised money on behalf of The 22q Family Foundation; we are proud to have contributed almost $70,000 to help run Education Station, the Foundation’s flagship IEP advocacy program.

In May 2019, Katie and the members of #werun22q formally announced their separation from The 22q Family Foundation in order to pursue other avenues to assist families who live with 22q.

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