We’re Putting the Band Back Together…

Hi #werun22q fans! It’s us again – we know we’ve been silent over here for awhile, but we’re quietly working behind the scenes to try to pull off a Ragnar in 2022! We’re really excited to raise funds for the UC Davis MIND Institute’s 22q Healthy Minds clinic. While we work out what the race and fundraising might look like in our mid-Covid world, we’re hoping to fill the last couple of runner spots on our team!

In order to protect all of our kiddos, our families, our friends, and our communities, we are requiring all team members to be fully vaccinated and boosted prior to race weekend and take a rapid test prior to entering the van for the weekend (this is non-negotiable). Runners must maintain a pace under 11:00min/mile for the duration of their miles (usually between 14-20 per runner) in order to finish the race in a timely fashion. We’ll help plan logistics so that all team members are able to travel to race location and coordinate hotel arrangements, but runners will be responsible for race registration and their own travel, hotels, van fees, and food.

Now for the good part! Our spring team is hoping to run Ragnar New England, starting in Groton, CT and finishing in Quincy, MA (barring no cancellations from Ragnar). The weather should be beautiful at the end of May (May 20-21) and the scenery of a Ragnar never disappoints. We’re pretty excited to be “putting the band back together” as they say and we hope that you’ll join us on this journey!

alt text: Blues Brothers gif that reads, “we’re putting the band back together”

Running in these uncertain times…

First and foremost, we want to send our ❤ to all of you! We know that many in our community are anxious about Covid-19 and we will continue to provide factual information here to help ease fears as best we can. A big, heartfelt thank you to all of the first responders and healthcare workers who are working hard to care for people all over this world! (Our team is made up of several healthcare workers who are on the front lines and teachers who are doing their best to maintain calm and learning for our kids, and we are grateful for their work!)

As of right now, Ragnar plans to continue with events planned for May but the situation remains very fluid and our race is one big question mark considering the CDC’s recommendations to continue social distancing for 8 weeks. If Ragnar Cape Cod is cancelled, we are already making contingency plans! Your #werun22q runners are committed to seeing this thing through!

It feels very socially irresponsible to continue with fundraising measures at this time, while families are unsure if they will have enough money to pay for essentials during this period of uncertainty. To that end, we would like to extend the opportunity for mileage sponsorship and open 250 miles for you to claim. We only ask one thing in return: when things calm down and your family is safe and secure, that you contribute to our fund. No minimum. Just donate what you are able, when you are able.

I will personally reach out to those of you who have donated thus far to thank you and find an appropriate way to commemorate your gift to the #werun22q Innovation Fund.

Make sure you visit https://werun22q.org/how-to-sponsor-a-mile/ and fill out the form at the bottom of the page for your loved one to be recognized!

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.

The Moment You’ve All Been Waiting For!

Here they are! The final mile assignments for Ragnar Great Midwest 2019! You should be able to figure out your runner and the approximate time of your mile!

We’ll be posting all over social media this weekend – check out our Facebook page (https://www.facebook.com/Werun22qragnar/ ), Instagram (@werun22q) and here on our blog! We’re dragging Lynne around with us – she may have broken her leg in training for this Ragnar and gotten out of the actual running part, but we’re making her work as our social media coordinator and photographer extraordinaire!

If anyone has concerns, questions, or changes to this finalized list – I ask that you please send them to werun22q@gmail.com ASAP – I will be getting into one of the 15 passenger vans and beginning my drive from south Florida to Chicago tomorrow (oh my gosh!) and it will be more difficult to address issues from the road.

Thank you again to all of you – our supporters and fundraisers and fans! We could not take on a project of this undertaking without your love and encouragement – because of you, we’ve raised $12, 786 for The 22q Family Foundation and we’re proud to support their mission of connecting, supporting, and educating families with 22q!

This is Why We Run

Not exactly the texts you want to get from your child while driving home from work. Or ever, when you feel like you have done everything right to not make him promises, never lied to him about his abilities, tried to educate him about the alternatives. And that those alternatives are viable options. And that not everyone has to go to college, complete with examples of great people he knows who are successful despite- or because- they did not go to college. We gave him positive role models, had conversations about the things he likes to do and ways we can help him turn those into a career. So how could he come home from school, on “Accepted Student Day”, to ask me these questions? My heart broke for him, for me, for all of us who surround and support him on a daily basis. My parents who dote on him and get him through the mundane daily tasks while I go to work each day. His older sisters and a younger brother who encourage and support his every move, and serve as outstanding role models in their own right. So what do I do? (pull over) Answer him. Cry. Just a little. And turn to my team. My #werun22q team. I would say they are my family but that would be doing them a disservice – you don’t get to choose your family. They quickly embraced me, or as much as you can do that via Facebook chat, and made me think of the reality.

Chris is a kid who has come so far; from a newborn with no cry, anesthesia 13 times before his 6th birthday, struggles with school, struggles with simple things like tying his shoes!, getting places on time, all the doctors and therapists. But despite or because of all that, what he is is AWESOME. Chris is kind, he is thoughtful, he is compassionate, quiet and respectful. He is a certified PADI diver and gym enthusiast. Need to know Eagles trivia, anything about a past or present player? Chris is your man. As parents and caregivers we tend to focus on what we can do for our children, but what has Chris done for me? He has made me a better mother, teacher, advocate for my students, daughter, and friend. Because of him, I am so much more than I would be without him-and because of him I get to have #werun22q on my resume. Thank you, Christopher Stevens, for that!

Jen Stevens, Christopher’s mom

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.

The Journey Begins

Hi #werun22q fans! We are so thankful you have decided to join us as we again tackle a 200ish mile relay race for 22q! We are TWELVE weeks from race weekend and getting excited!!! Over the coming weeks and months, we are going to introduce you to all 12 runners, the cause – 22q11.2, and some of the children we are running for.

You’ll read about our team, our training, our packing, and our inspiration! We promise to be real about our struggles, both with running and with 22q, but this blog will be a place of positivity. You will read about how our children are smart, kind, brave, strong, friends, loved, and amazing – both because we believe children become who we tell them they are and also because they ARE all of those things. You will read about the friendships that have been formed because of this team; we have created our own village of people to lean on and have helped our children to do the same.

We do not take this role lightly. We are honored to be able to carry the names of all of these children and young adults. We respect their hard work day in and day out and are grateful you all trust us to carry them with us!

Here’s where you come in – check out the 22q Family Foundation.  Look around this site and check out the 2019 team. Sponsor a mile for your loved one. Then send friends and family HERE to help you raise $100 for your mile!

Have questions, comments, or concerns? Send ’em our way! We can’t do this without your support!

Putting the FUN in Fundraising!

We understand that a $100 donation is out of reach for some parents and we don’t ever want anyone to feel like they cannot participate alongside of us. We are going to share a couple of ways some of our community has been successful in asking friends and family for money. First up – Eileen and Nate Nordmeyer!

Last year we knew that we wanted to help raise money for the #werun22q Ragnar race, but wanted to come up with a creative idea that would attract the attention of our family and friends.  Their love and support for Nate is amazing, so we decided to get him (and his sister) involved!  We created incentives for each monetary level of donation that provided a “reward” from the kids playing to their area of interest and strength. Together we came up with the following structure: 
“For a donation of $10-$19, Nate will walk 22 steps on his stilts and send you a video of this impressive skill, $20-29 Nate will send you an inspirational message for 3 days with a different emoji each day, $30-$39 Claire and Nate will draw a personalized animal “Thank you” picture. One of a kind!,  $40+ Nate will give you a shout out as he shows off his American Ninja Warrior skills! Prepare to be amazed as you watch a video of his unbelievable skills.” 
We even promised to let Nate dye his hair blue if we met our fundraising goal of $500.  Amazingly, we almost tripled that goal.  Our family and friends were excited to receive their bonus for donating.  It was fun and easy and something you could definitely do with your own family.  

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