86 Days to Go…

Today is February 12, which means that in 86 days, #werun22q will be toeing the line of the Ragnar Cape Cod road race! As we’ve updated on Facebook, this year #werun22q is proud to field TWO teams of runners – that’s 24 people dedicated to running for our community, raising funds, and spreading awareness!

It’s been an adventure here; as a team, we’ve been brainstorming about a way to raise funds that would help as many people in the 22q community as possible! Just like the community we are looking to help, we live all over the country and our children are treated at different 22q clinics – therefore choosing just one felt impossible!

And then we realized. once we got our children past the life-threatening/life-altering complications of 22q (open heart surgeries, palate repairs, feeding tubes, etc) one thing remained – the hopes and dreams that our children would one day become fully integrated members of their communities. We want our children to be successful, have families, hold jobs, be happy; all ordinary parenting wishes.

We chose the UC Davis MIND Institute to be our beneficiary for the 2020 #werun22q Ragnar Relay because their mission aligns with ours. We established the We Run 22q Innovation Fund to help families who are coming to the clinic to participate in research studies get additional information, to help the researchers and medical team of the clinic answer questions and begin research projects in order to receive additional grant money to continue these projects, and to allow the team to bring in more patients from out of town who might not ordinarily have a chance to see this wonderful clinic and it’s amazing team.

We hope that you’ll consider giving a gift in your loved one’s name. We are humbled and thrilled to run for them.

Our Honorees

We are so thrilled that so many of you are donating and/or sponsoring miles to be run in honor of someone YOU love! Here is the list of miles as of April 14, 2019. If you don’t see your loved one listed, please email Katie at werun22q@gmail.com so I can add them! All of these amazing children can also be found on our Wall of Honor!

If you haven’t sponsored a mile yet, but want to – there’s still time! We are going to be accepting names for miles until April 30 – that will give us enough time to ensure all of the names are added to the shirts and the materials are ready for race day on May 17!

How to Sponsor a Mile!

There are less than 10 weeks until race day and we want to see every one of our 190+ miles dedicated to loved ones in our 22q family! So here is a step-by-step breakdown of how easy it is to sponsor a mile! This relay is one of the 22q Family Foundation’s biggest fundraisers and is critical to continuing to provide services and programming to our 22q family and to raising awareness in the communities in which we live and work! Here’s how to get involved

First – visit the sponsor a mile page HERE! You will fill out the form with your child’s name, submit a photo, pick a runner or a mile number (or let us assign one to you) and pledge to raise $100. Once that form is received, the team can begin the process of assigning miles and getting things ready for the race. Every picture is uploaded as quickly as possible to our WALL OF HONOR and those pictures will be carried with us during the relay.

Next – raising $100. Consider sending family and friends to our Mobilecause donation page where they can help you meet your goal! Your $100 doesn’t have to come all at once; you and your friends can send in $10 a week until race day!

In exchange for your donation, we will carry your honoree’s name and photo with us during the legs of the race in which their mile is run, their name will be on the back of our van and our running shirts, and you will receive a t-shirt commemorating the event! We’ll even be doing some fun raffles of awesome prizes for the biggest fundraisers; for example – Nate Nordmeyer and Eileen Boenning ended up with some pretty sweet Ryan Dempster 22q Chicago Cubs jerseys last year…

Your donations help us fund programs and services that help people in the 22q community of all ages – Education Station, scholarships for young adults with 22q, Career Accelerator, and more! 100% of proceeds go towards providing programming for our 22q family. 

Stay tuned for form letters to share with employers and care providers and family and friends to help you ask for donations, also keep an eye out for helpful guides to talking about 22q!

Why We Fundraise – The Nordmeyer’s Story

Seven years ago, our son Nate was diagnosed with 22q11.2 Deletion Syndrome at the age of 3 1/2 years.  This diagnosis hit us like a ton of bricks and like every other parent in the digital age, we frantically searched the internet.  Lucky for us, we found the 22q Family Foundation (then known as The Dempster Family Foundation).

Over the years, the 22q Family Foundations has supported us, and more importantly, Nate.  They have:

  • provided education: for us, our son’s educators and medical providers via fact sheets, seminars, webinars and references.
  • promoted awareness: which has empowered us to do the same in our own community. 
  • advocated for appropriate educational services for Nate via the free Education Station.
  • fostered a community: There’s such comfort in finding others who have shared experiences, learning from those that came before us and supporting those that are new to the diagnosis. 
  • created hope for the future through scholarships for higher education and career coaching services.

Knowing that this organization is not-for-profit and run entirely by volunteers, fundraising for the 22q Family Foundation became a priority for our family.  The #werun22q Ragnar race is one of the foundation’s biggest fundraisers and is a powerful way to spread awareness.  Every year they raise funds to keep these programs running and provide the education, awareness, advocacy, support and community that have been so valuable to us and to make sure that these services are still there for the next group of frantic overwhelmed parents that are sitting down at their computer.