Saturday, March 18, 2017

Raising Awareness

Internationally, Rare Disease Day is celebrated on Feb. 28, and last year, we worked hard at trying to raise awareness for INAD, but helping to bring attention to rare diseases in general. This year, we had a ten-day-old newborn, and weren't able to do as much, but raising awareness for this disease continues to be a top priority for us.

We are so grateful to everyone who helps us meet that goal, by wearing gracelets or T-shirts, sharing our story or blog or asking us to speak about our journey. This year alone, we have had several opportunities, and we are always pleased to be asked.

Hiltopper Wrestling Team
Our first chance this year came in January, when the Hillsboro High School wrestling team contacted Kyle and asked if we could bring Grace to their last home meet of the season because they had a donation to INAD research. Kyle covers the team as part of his duties at the paper, and really enjoys writing about wrestling.

Kyle and Grace pose with members of the Topper wrestling team at their last home meet of the season.
Just before Hillsboro's first match, the team came out and gave a $250 check to Kyle and Grace. After accepting the check, Kyle had a chance to tell the team thank you and share a bit of our story. While most of the Hillsboro fans have heard it a time or two, fans of the other two teams had not, and several even stopped by to talk to us on their way out. And every chance we share our story helps win the fight against INAD.

Nokomis Women's Club
Late last fall, Margie Eisenbarth asked if we would be willing to visit the Nokomis Women's Club in either November or February to share our story with members of her organization. The Nokomis Women's Club had already donated twice to INAD research, so they knew a bit about our story, but we were thrilled to be able to visit in person and thank them for their generosity.

Grace hung out with Grandma Susie while I spoke to the group.

When the date of the meeting rolled around, Kyle ended up having to cover regional girls basketball, so mom rode with me and Grace to the meeting.  I asked Margie exactly what she wanted me to talk about and for how long, and she said I could share about our fundraising efforts as well as a bit more about INAD for about 20 to 30 minutes.  

Grace got some goodies too, including a new Nokomis hat!
That's a long time to talk, and I was nervous at first, but once I started talking, I think I talked their ears off.  I started at the beginning and how we learned that Grace had INAD, and talked about how much money we had raised over the past two years.  Their group had already made two donations of a couple hundred dollars each, and made another contribution for $250 after our presentation that night. One thing I shared is that although our communities have helped us to raise over $130,000, most of it has come in donations of all sizes, but that it all adds up fast. Through everyone's generosity, we will continue to search for a treatment or a cure.

Morrisonville High School
For the third year in a row, our family was invited back to Morrisonville High School to talk to biology students about genetics.  It started right after Grace was diagnosed with INAD and teacher Janet Walch asked Kyle if she could show her students a photo of Grace. He offered instead to bring Grace to meet the students, where she was immediately adopted by the student body.  

Hanging out with Morrisonville students.
Grace definitely loved all the attention!
So happy to be part of the Mohawk family!
Grace had big smiles for some of her favorite Morrisonville teachers!
To date, Morrisonville has raised more than $5,000 for research through penny wars, baseball games, bake sales and more.  We always love to go back and talk to the students about the genetics behind INAD. This year, they had been studying in vitro fertilization, and had questions about our journey.  The kids always ask good questions, and they love to see Grace.  I love to watch them come up and talk to her before and after the program.  She just lights up when the kids come to talk to her.  And we feel so blessed they have adopted her into the Mohawk family.

Lincolnwood Lady Knights Volleyball
Another longtime part of team Grace is the Lincolnwood junior and senior high volleyball teams, who were some of the first to start doing fundraisers for INAD research. At the time, Kyle's cousins, Kayley and Kensey were part of the junior high team, who started doing "Serving for Grace" fundraisers in between games.  That first season, we made it to a couple of games and Kyle even had a chance to show off his serving prowess.  

Kyle and Grace got to be in the team photo after the Lady Knights won sectionals.
Just this week, Kyle and I took both girls to see the eighth grade Knights win their second consecutive sectional championship. Grace was all smiles to see the kids, and they gave us a $200 check from this year's "Serving for Grace" fundraisers throughout the season. We wish them the very best of luck at state this weekend!

Over the past two years, both the junior and senior high teams have continued their "Serving for Grace" fundraisers, and the high school team has even added Volley for Grace awareness nights with several other local schools. In fact, this fall, they will join forces with the Hillsboro team to host an 18-team tournament, called "A Grace Filled Tourney," and we can't wait to be a part of it!

Upcoming Events
There are still plenty of chances this year to join Team Grace and help us raise awareness for INAD. 

Currently, members of the Litchfield High School Student Council are selling temporary license plates in the state of Illinois for $30, sporting Princess Grace. They are also selling baseball shirts for this year's Montgomery County Baseball Tournament on April 15 at Nokomis High School. 

Check out the newest Grace shirts, now available at Litchfield High School!
This is the second year they have done the license plate fundraiser, and we love driving around with Grace on our license plates. Thanks to all the kids for helping out!

The following weekend, Kyle and his beautiful girls will be attending the father-daughter dance at Lincolnwood High School, which raises money for a scholarship in Grace's name for Lincolnwood seniors and alumni.  It will be so much fun to see all the little girls dressed up and dancing with their dads, and I know Kyle will look forward to dancing with Grace and Charlotte.

And don't forget to mark your calendars for this year's Grace Cup senior soccer all-star game on June 3 in Raymond and the second "A Grace-Filled Journey 5K" on September 2 in Hillsboro. Both in-person and virtual participation will be included in the 5K race.

For more information about any of these events, follow us on Facebook at "A Grace-Filled Journey" or on Twitter at glhjourney.


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