Wednesday, January 18, 2017

All good things must... Walk for Fragile X

In the fall of 2003, I was contacted by a local high school senior that I had never met named Andrea Schnarr. A member of my church had given Andrea my name and recommended that she contact me about mentoring her for her senior class project.

Andrea had an ambitious project - to organize a walk to raise awareness and funds for something. That something, after our introduction, became Fragile X Syndrome.

And just like that "Walk for Fragile X" was born.

There was never a plan or thought beyond the spring of 2004. We were very focused on creating this one walk. One day. One walk. One hope that it would be a success. I did my part in helping to educate Andrea on Fragile X and help with promotion. I answered questions while she planned, got donations and with the help of our families and friends we hosted the first walk as 150 people came together to raise just over $5,500 for Fragile X - far exceeding our expectations.

After many months of planning, not only had Andrea aced her project but we gained a life long friend and new member of our family.

Andrea with Parker and Allison at the 1st Walk for FX in 2004
Our local newspaper and radio station were both in attendance, during an interview while the walk was going on I was asked, "Will you do another?" Having not thought at all beyond that year I said, "We will do it until we have a cure."

At that time, I truly believed a cure would happen within the next few years - before Parker hit puberty. I knew where the research was heading and felt confident that this would be do-able.  From that point we hit the ground running.

With Andrea leaving for college, I took the lead for the Walk for Fragile X. Life was a bit easier then. I was a stay at home mom with young children. Time was much more on my side in those days...

Over the next several years amazing we saw incredible growth and support from our community and from family and friends near and far.

2005 with my friend, Dawn Carroll. One of the very first FX moms I connected with and was inspired by. 

These little babies <3 2005  

Our friends Clifton and Tina in 2005


2006 Fragile X Families from all over Illinois!

2006 Walk for FX That's itty bitty Remi Lyons on the left, Andrea, me carrying Allison, Parker, Kelsey #1 (Giddens) and Scott leading the walk.

2007 Group Picture

2007 Special Guest, Congressman Phil Hare, with our family.

Remi, me, Parker, Congressman Hare, Allison and Scott in 2007

The pic of the 2007, ABG and Allison

2007 brought a very special guest to our walk when Congressman Phil Hare joined us. A very dedicated champion for Fragile X he proved just how dedicated and amazing he was when during a meltdown Parker kicked him in the shin in front of our entire crowd during the welcome speech. The former Congressmen didn't think twice about it but continued with his address to the crowd. The meltdown was pretty epic and crushed me to have it happen in front of everyone. When it was my turn to speak. All I could do was look up with huge alligator tears and say, "And this is why we are here. This is why we do this."

It's fair to say that falls in the moments of my life I'll never forget. In true Fragile X style, we ended on a good note.

I know I have pictures from 2008 and 2009 but I'll have to dig them up and add them later...

From our 2nd walk on - Karen Hanlin had become a staple of our walk. Every year she took at least 1 full week of leading up to the walk to help me get ready for the walk. We had a lot of great times and heart to heart talks together through the years. Every year she brought in new volunteers from Mid-America National Bank to help us. She was amazing, as a volunteer she was the best you could ask for. She did it all and put her heart into everything she did. As a friend, she provided amazing guidance and a shoulder. We didn't always see eye to eye... which I'll share more about shortly.. (See the comment under the balloons)


2010 Committee members posing for the picture for the Daily Ledger promoting the walk.
2010 Karen Hanlin and her Mid-America National Bank crew!

For 6 years, I had Karen by my side every year growing the walk and helping me problem solve. Then, completely unexpectedly less than 2 months after our 2010 walk on June 10th, Karen passed. Losing Karen was gut wrenching. I was honored to speak at her funeral and crushed when we started planning our 2011 walk without her.

2011 brought an addition to our walk that we had discussed for awhile but didn't feel prepared to take on until Lori Driscoll stepped up and offered to take the lead on the Fragile X 5K.  With Karen no longer with us, Lori took over taking time off work to help me prepare. She and Kim (Lyons) had also been key volunteers since the 2nd walk and stayed close by my side as we continued on.


My favorite pic from our 1st 5K of Lori and Kim giving directions for the 5K...
You know "go *this* way"

I had told Karen for years I wanted to do a balloon release. Karen hated the idea and we disagreed on it every year with her winning. With no one to argue with me, we inflated a zillion balloons for the 2011 walk.
To say it was a complete disaster is an understatement! Not only did the weather not cooperate but the balloons became a tangled mess, leaving us to hand off clumps of balloons to people. Those of us who knew Karen had a great laugh from it and said that once again Karen got her way.. no more balloons!

Always present the fireman from the Canton Fire Department helped us hang tarps to save us from the rain that was pouring down in 2011.

The group picture was taken under the pavilion before 1 quick lap for our walk in the rain.
If we can do anything... it's improvise!

Karen's family wore special sweatshirts in her honor.

2011 Girl Scouts

2011 Volunteers

2011 Allison and Remi!

2012 Kim and Lori, always stepping up, taking on the booth at HyVee to promote the walk and 5K
2012 5K runners

2012 Auction

Drew Brodbeck and Parker

2012 Girl Scouts

2012 Auction, there was a fight for this amazing bench!

2013 - 10 years!! 

I think we were all a bit shocked when 2013 rolled around and the reality hit us that this was our 10th annual walk for Fragile X! Those first 10 years had flown by. Many things had happened. High school and college graduations, weddings, funerals, new volunteers and amazing dedication by our team.

2013 shirt design

Allison, along with her Girl Scout troop leader, Amy Allard made the news in a story talking about the amazing involvement of their Girl Scout troop in our walk and their incredible support for Fragile X!

Screenshots from the news story!
It also came with an unexpected hurdle in the form of a flood. Our home for the walk since the start was Wallace Park. 2013 brought the great flood which completely flooded the park. There was no way the park would be open for the walk, with just a couple of days to figure it out our search was on for a new location.

This ended up being a blessing in disguise. We ended with a new location at the Middle School which was a huge upgrade when it came to space. We easily quadrupled our space which was much needed. A great new trail for the 5K which was much more appealing to our runners - it was really a blessing!

2015 Fragile X 5K

The incredible Dr. Elizabeth Berry-Kravis running our 5K!

Jayne Dixon-Weber's daughter, Cassie (front right) came with friends to run the 5K too!

Our 10th annual walk also came with a major surprise when friends of mine flew in from Massachusetts, Canada, Michigan and Colorado for the walk!

Helping me with late night, last minute things for the walk! Friends from all over :-)
Back Row, Melissa (MA), Cindi (CO), Amy Z (IL)
Front row: Me, Karen (Canada), Mary Beth (MI), Talitha (Canada)
I hate surprises but this one... I'd take every single day <3

Helping to set up for the walk, my amazing friends! Minus, Melissa who needed to go back to Caleb at my house :-)

2013 Scouts

2013 More friends from Chicago and South Dakota 

My friend, Lenny, who always made the drive. We were sad to say goodbye to Lenny in 2016 when he passed away unexpectedly.
Go Good Lenny. Thank you for your support.
We miss you much!

Parker with Lee and Mrs. Reavis among other friends walking at IMS.

Andrea, Dad and Nick Garera who won everyone's hearts "You're It"!


Back of the 5K shirt

Sole Sisters who ran the 5K

Front of the 2014 Walk shirt

Amy Zeleznik and Abe

Some awesome FX Mommas

Our A Team, Allison and Austin

It's Auction Time!

Nicole and Lori always made a great team!

Dawn and Brad

We opened the Computer Lab for some quiet time away from the excitement.

Our girl scouts

My Grandma and Richard Gunnerson

Our friends from Missouri, The Hamiltons!

Jerry Hanlin and sons at the auction

Mom and Lew waiving at Heather, our photographer, up on the firetruck.

More walkers

2014 Volunteers


Fragile X 5K

Girl Scouts 2015

The Lincoln Family - they stole our hearts and we've watched their kiddos grow! An amazing part of our walk each year.


2016 Fragile X 5K

So many shirts!

My house... right before (and then repeated, right after) the walk each year. 

2016 Ready for the Walk

The easiest way to get everything from my house to the walk location... a horse trailer!

And now....

Well, now it's time we say THANK YOU! Thank you for 13 amazing years that we never saw coming. 13 years of incredible support from our community, family and friends.

Over the past 13 years we've made and built friendships that will last our lifetimes. Individuals who were in no way attached to our family signed up to help through friends, through churches, through co-workers....they were there and are now, forever, a part of our lives.

The walk is a multiple month project that should start in the fall and kick into high gear after the first of the year. We pulled that off well for a long time. And then... well, life. As our children have gotten older, we've become incredibly busier. For all of our volunteers, our lives have moved forward in ways we never could have expected. It's left little time to prepare and pull off and amazing event.  Although we had wanted to end the walk on our highest note ever... we simply do not have a date we can work in this spring to pull that off.

A piece of our hearts have broken yet that piece is also replaced with incredible pride for a 13 year run that raised incredible awareness and funds for Fragile X.

While we are saying goodbye to the Walk for Fragile X and Fragile X 5K, we are not saying goodbye to raising awareness or to fundraising. We have something up our sleeve that's completely different than anything we've done before. It won't happen this spring but when the time is right, it'll be worth the wait.

This spring, for me, I have a young man to prepare for his 2nd prom. That same young man will walk the stage at graduation this May, shortly after his 18th birthday. These are things that are incredibly important to him... and to me. These are also things that take significant planning, practice and time. Such is life with Fragile X. It's what is necessary for his success and that is a top priority for me.

This spring, I have a beautiful young daughter who - after attending an Advocacy Trip to DC with me - will be off on another Girl Scout Adventure during spring break in April.

They are, simply, always on the go and I could not ask for more for them than to be such active members of our community.

I have many people to thank and am in tears knowing I'll forget someone who is crucial. If I do, please know it was not intentional and feel free to call me out on it so I can add you in :-)

I promise, not all will be long mentions, I only have so many tears I can shed while writing this and I want you to read this all the way through but a few key people... they've more than earned a few extra words.

  • Andrea Schnarr, you my dear friend are part of our family. I am so incredibly proud of the woman you have become and all that you have done. It's been amazing watching you grow up too, like one of my own. You are forever a part of our family. We love you and cannot thank you enough for starting all of this and making that first phone call all of those years ago. You reached me at a time when I was lost in a brand new diagnosis unsure of my purpose but stepped out of my comfort zone to give this a try (we all know I can't say no). The results... life changing. You have helped me become the person I am today and I thank you for that with all of my heart.
  • Kimberly Lyons, our children knew we needed each other and there was a higher purpose for us when Remi took Parker under her wing in kindergarten. You have never left my side. You have survived the very best of me and the very worst throughout all of these years. I never had to think twice if you would be a part of this, I always knew you would. Thank you for taking on the 5K with Lori - the 2 of you owned that amazingly. You have always been my rock. I am forever thankful for all you have done and most of all - your friendship.
  • Lori Driscoll, oh lady! We go back to when our boys were 3 years old! Oh my goodness, to have those days back :-)  You are amazing and have been one of my favorite people to get to know through all of these years. You are the hardest worker I have ever met. You take on everything with the determination that it can happen and then make it so. Without thinking twice you took the lead ont he 5K and with Kim, made it awesome - even through my glaring "remark the course" eyes.  You have put up with me well and still call me a friend... for that and all you have done, I am thankful and will treasure you always.
  • Emily Johnson - our first and longest lasting Karen prodigy! I'm not sure how she talked you into our chaos but you walked in timidly and then stayed forever. You have been the best addition to our walk family and to our lives. Your amazing spirit, uplifting and encouraging personality and wit have always been welcomed. You see the positive in everything and take on all new challenges put before you. We watched you go from quiet and shy to a real leader in this group. I am so happy to call you my friend.
  • Amy Zeleznik - lady!! You are my sanity and at times, I think I'm the reason you may lose yours! I cannot imagine the FX life without you. You are an amazing mother, friend and soul. You are my calm and my shoulder and always here. I don't know how you do it all but you do so with style, grace and that beautiful smile.
  • My parents - John and Colleen Usrey. You have pushed and encouraged me to become who I am and never left my side. You've been my best cheerleaders and caught me when I've fallen but always made sure I got back up. I would not be who I am without you and could not be more proud to be your daughter. Mom, from getting donations to all of your help the night before and on walk day, I thank you!! Dad, you are the social butterfly of our walk and keep our auctions lively, thank you for letting everyone see that great person you are each year! I love you both so much!
  • The Coopers! I'm just listing you all in one place ;-) Betty, Randy and Jeni! You rocked the bake sale every single year, you pulled in donations, you were on Parker patrol, you've done it all. You've wiped my tears, offered to kick butt, made me smile, welcomed participants and pulled in new volunteers. You are, simply and truly, amazing and I love you!
  • Scott Roos - thanks for standing by me through this one. Like many of my fx journeys I know it put you out of your comfort zone and that took it's toll on us. I've always believed everything happens for a reason and the proof in that is Jen who jumped in beside you each year for the walk (and pulled in family and friends) and became my sanity in many ways. Thank you for sticking through all 13 years, lining up the great fireman, food and helping with making the walk a success from getting donations to setting up to tearing down. You and Jen have been such an important part of the success of the walk and I am thankful for and to you both.
And of course....
  • Amy Allard and Rocky Richardson - holy batman you two really are the wonder twins. I don't know where you hide your capes but I am convinced you wear them and posess super powers. You have been such an amazing asset to our walk, you are dedicated and truly incredible women who are the very best role models for not only all of the Girl Scouts in your troops but women of all ages, everywhere.  Thank you for being a part of our group!
  • Parker's Pals... Drew Brodbeck, Lee Davis, Michale Davis, Remi Lyons, Jessie Williams (I know I'm forgetting some) Thank you for being there at the walk for Parker! You are the very best friends anyone could ask for!
  • Dan Oaks... Your pulled pork made our walk and also made it tempting to keep going on just for that reason :-) The incredible support from you and Lori over the years is amazing. We are forever grateful.
  • Grandma Carolyn - I already miss those cinnamon roles! We've missed seeing you the past couple of years but always, always have you in our hearts and appreciate all you have done over the years.
  • The Lincoln Family, Missy Zolecki, Tiffany Williams, Kristy Englert, Canton Fire Department, the Girl Scout and Boy Scout Troops, Colonel Klink's Inflatables, IMS, Canton Park District, Kelsey Emberton, Kelsey Garlish, Grandma Day, Shelly Deal, Canton Daily Ledger, WBSY, Jake Fidler, the Hillcrest Auction Company
  • . ..
  • Our community family and friends.... there are so many to name over 13 years please know that if you came to walk, run, be a part of the auction, donated or just shared our event - we are so thankful and appreciative of you. 
For our closest volunteers, you've survived my favorite and most hated week each year :-) I know I've turned into a bit of a monster at times from the pressure and lack of sleep but you never left me. Truly a testament to your friendship and love for our cause.
Saying we are done with this chapter is incredibly hard. While this chapter closes, another is soon to be written and when that is announced we hope to have your continued support.

With all of my love, appreciation and thanks.... truly, THANK YOU for an amazing 13 years of Walk for FX. Now... to find someone to make me a t-shirt quilt... :-)


PS  you can ALWAYS donate ANYTIME to the National Fragile X Foundation or our local chapter: Central IL FX at  We have a lot of work to still do! Our heart, passion and drive is there and will continue to do all we can for the amazing fragile x families and NFXF!

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