Seize Your Joy


  • $5,581
  • 95
  • 15

This campaign already ended. We hope you like the results!

$5,581 raised of $26,200

"Seize Your Joy" a team to help the FAMILIESCN2A...


name dollars donors


Tracy Umezu

Tracy Umezu

$2,385 32


Ann Stanoch

Ann Stanoch

$1,651 27


Andy Lee

Andy Lee fundraising for Seize Your Joy

$525 13


Laura Randgaard

Laura Randgaard fundraising for Seize Your Joy

$450 9


Cate Birmingham

Cate Birmingham fundraising for Seize Your Joy

$350 4


Susan Munson

Susan Munson fundraising for Seize Your Joy

$160 4


Rachel Wallace

Rachel Wallace fundraising for Seize Your Joy

$120 4


Lindsey Van Hoven

Lindsey Van Hoven fundraising for Seize Your Joy

$50 1


Rachel Amundsen

Rachel Amundsen fundraising for Seize Your Joy

$50 1


Sara Voss

Sara Voss fundraising for Seize Your Joy

$25 1


Michelle Marmo

Michelle Marmo fundraising for Seize Your Joy

$20 1


Ryan Radzak

Ryan Radzak fundraising for Seize Your Joy

$0 0


Ryan Radzak

Ryan Radzak fundraising for Seize Your Joy 1

$0 0


Lissa Harper

Lissa Harper fundraising for Seize Your Joy

$0 0


Holly Mahling

Holly Mahling fundraising for Seize Your Joy

$0 0

Most Recent Donations

Most Recent Comments

Charlotte was born March 8th, 2014 at 35 weeks, under somewhat emergent circumstances due to the discovery of little to no amniotic fluid. This was the first indicator that something was wrong. Before her birth it was unknown she had any medical complications, although in hindsight she was likely having seizures in utero. Within seconds of her birth she required a breathing tube to be placed and after her family saw her for five minutes she was transferred to a different hospital with a higher level of care. It was clear within hours of her birth that something was wrong and she was having what appeared to be seizures. This was confirmed shortly there after and she was placed into a medically induced coma in an attempt to stop the seizures. At times the EEG was showing that she was having over 400 seizures a day. The seizures were essentially unresponsive to any medication tried. Charlotte spent two months in the NICU and was sent home with out many answers and still having hundreds of seizures a day. She was diagnosed with the SCN2A mutation when she was about three months old and had been out of the hospital for about a month. Shortly there after she was admitted back in to the hospital for being in a state of status - a state of continuous seizures. In Charlotte’s short life she has had a breathing tube placed five times related to seizures that have stopped her from breathing. She has suffered from life threatening respiratory infections which because of her underlying diagnosis have overtaken her little body quickly and left her in critical condition. She has been hospitalized and sometimes in the ICU for respiratory infections eleven times in the past eighteen months, several of those admissions also required a breathing tube to be placed to due respiratory failure from the infections. In addition to the seizures and respiratory complications, she has had complications related to urinary retention and gut issues all secondary to her underlying SCN2A diagnosis. These complications require frequent interventions throughout the day in order to help her not have to be hospitalized, and remain at home. She is currently on seven different seizure medications throughout the day, has tried and failed many more, and still her brain suffers constant seizures, hundreds a day, sometimes for hours at a time.

When Charlotte was a few months old her family decided they wanted Charlotte to experience as much in life as she possibly could. They did not like the sound of a bucket list, so they made a “Joy List” for her of all the things in life that bring Joy that they want her to experience. On of the Joy List submissions was for Charlotte to run a marathon. During one of the many hospitalizations this spring it was decided that this was the year she was going to run a marathon. Her mom Tracy, who has never run more than a mile and was going to do the full marathon with her. To her families surprise a following of people not only want to support her running the race, but also wanted to help her raise money through running the race for research to find a cure for SCN2A. In addition to this support, there is also a larger than expected group of people who don’t want to be just spectators and want to run the marathon with her. As a group this team is running for her, because she can’t physically run and we are running for all the children who have SCN2A and desperately need a treatment works or a cure.

Despite all of these horrible things her little body has had to endure, she is the brightest light her families life, and brings them more Joy than they ever knew existed on this Earth. She has taught them lessons about life and and an appreciation for the little things that they would never have learned without her. They are honored and blessed to have been entrusted with the opportunity to care for her, love her, and give her the best life possible. Your support of team “Seize Your Joy” and ultimately the Families SCN2A foundation is helping forge the way to fund research in order to gather more information about this rare and debilitating diagnosis, explore new treatment options that are specific for Charlotte and children like her, and above all hopefully someday a cure. Team Seize Your Joy thanks you from the bottom of our hearts for listening to Charlotte’s story, and embarking on this exciting journey with us!

Team Seize Your Joy would like to give a HUGE thank you to My Team Triumph for going above and beyond to make this joy possible for Charlotte to experience. Charlotte will be pushed by a My Team Triumph Angel Katie in the full Twin Cities Marathon in October. We are forever grateful for what they have done and we want to help support their organization so that other people who ordinarily wouldn’t be able to participate in a marathon, can experience the joy and triumph of running a race. Team Seize Your Joy is going to match all donations up to $2000 for My Team Triumph.

To read more about Charlotte's story visit:

For more information on the SCN2a mutation visit:

For more information on My Team Triumph Twin Cities visit:

If you are training for the marathon with us be sure to post pictures on social media and tag with the following tags: #seizeyourjoy #run4charlotte #mtttwincities

If you are interested in joining our team to fundraise or run the marathon email us at

Photo credit: Nicole Louise Photography

Team Captain

Tracy Umezu Tracy Umezu