Cure Rett

While we were at the annual Rett conference, we learned that an incredible organization called Cure Rett founded in the UK created a new relationship with the IRSF to spread awareness of and raise research funds for Rett syndrome.

I had followed Cure Rett on Facebook for awhile already and was so happy to meet some of the incredible people who a part of the organization. 

One of their trademarks is the infographics they create with images of individuals with Rett syndrome. And while they were in Utah, they took pictures to create infographics for any girl, boy or woman who was there. Ryan's parents were watching the girls and drove to Midway (an hour away from their home) Saturday morning so Leah could get her picture taken. It was fabulous! 

I'm so happy to now have this perfectly beautiful explanation of Miss Ribbons to share with the world. 

Giving Hope a Hand

Each year at the annual Rett syndrome conference, there is a Tribute Dinner to honor all the individuals with Rett syndrome. It is always a fantastic evening, often with many boys, girls and women with Rett syndrome in attendance. 

In addition to honoring those who have the disorder, other individuals are honored for their service in the field. This can be medically, scientifically, financially. They have honored doctors and researches, individuals who have raised a large amount of money for research or someone who has made a significant impact in the lives of those with Rett syndrome throughout the year. 

This year, much to my surprise, Team Rett of the 117th Boston Marathon was presented with the Giving Hope a Hand Award. Three of us were in attendance and accepted the award on behalf of the whole team. 

 (Team Rett in Boston the day before the marathon)

My heart was racing as they had Ryan, Erica and I stand in front of a room full of applause and Jennifer Endres, the Family Resource Manager, read the following:

"This year, our Giving Hope a Hand award is going to a group of people instead of just one person.

I’d like to ask Erica Robertson and Maren and Ryan Layton to please stand. These three, Erica, mother of Avery and Maren and Ryan, parents of Leah, along with 16 other people, trained for months for the 2013 Boston Marathon. Erica flew across the country from California and Maren and Ryan headed south from New Hampshire where they met their fellow team members—mostly for the very first time in person—to run on Monday, April 15th, 2013.

The Rett Community followed our team of 16 runners; we watched the posts on Facebook; tweets on Twitter, checked in on various blogs—we were watching, we were cheering for them and when we heard of the bombings near the finish line, we were terrified.

There was a period of time when we did not know who was safe—who had finished—who was almost at the finish line and we didn’t even want to think about who was actually at the finish line.

Slowly, our community came together alerting each other when they found out who was ok and who had reunited with their family members. After a few hours we knew that all 16 of our runners were safe and we were relieved.

These runners-- Erica, Maren, Ryan—along with the other runners on the team worked hard for months, training, raising funds for Rett syndrome research and creating awareness across the country. They, like the people of Boston and more importantly like the families affected by Rett syndrome, are strong, they are resilient and they will not give up on achieving their goal of crossing that finish line. We honor you and we thank you for giving hope a hand!"

Tears flowed down my cheeks as emotion from that day rushed over me. I remembered my elation to be running, my fear when I learned something was wrong, my relief as I found out Kate, Leah, Ryan's parents and everyone else we knew were all safe, my anger at not being able to finish. And then, sitting in a room full of people affect by Rett syndrome, I remembered once again the reason I was running in the first place. And it was an incredible and overwhelming feeling. 

We were asked to come to the front and Erica and I made Ryan speak so we wouldn't have to. I don't even remember what he said because I was so terrified and overwhelmed, but I remember thinking it was perfect. 

I am beyond honored to have been a part of this team and to have given even a sliver of hope to anyone affected by Rett sydnrome.  

 

This is the Place for Hope

Each year, the International Rett Syndrome Foundation holds a Family Education and Awareness Conference. Families, doctors, caretakers, therapists, teachers and more who are all affected in some way by Rett syndrome come together to learn, strengthen one another, support each other and grow. 

This year, the conference happened to be in Midway, Utah, which was perfect since we were already vacationing a half hour away! (In fact, we ran right past the hotel the conference was held in just the weekend prior during Ragnar!)

Knowing Ryan and I grew up in Utah, the Director of Family Support (fellow Rett mom, one of the most incredible women I know, and one of our good friends), Paige Nues emailed to ask me if I could help create a theme and design a logo. 

Feeling a little (okay, a lot) overwhelmed, I stared and stared at my computer one night when a phrase just popped into my head:

This is the Place for Hope. 

That was it. That was the theme for the conference!

The phrase, "this is the place" is well known in Utah. It was the phrase uttered by the first settlers of the Salt Lake Valley. They had traveled a long distance, there was turmoil, and there were many tears and innumerable trials along the way. 

 

And yet, they had hope. 

They had hope that the Salt Lake Valley held a positive future for them. They worked hard together once they arrived to make their hopes a reality. This has great similarity to those walking the trail of Rett syndrome. With the IRSF and all members of our Rett syndrome family, we can have hope! 

My good friend and an amazing artist, Laura Clarke Hawkins, selflessly painted a picture for the conference of Midway with Sego Lilies (the Utah state flower) to go along with the logo. Sego lilies were a source of strength and sustenance for the settlers of Utah, and the IRSF and our Rett syndrome families are a source of strength and sustenance for everyone who is a part of this journey.

It was fun to see the theme and and an image of the painting splashed across the website prior to the conference, and the projector screens, the programs and posters throughout the weekend. Knowing I had a small part in the conference made it that much more meaningful. 

Ryan and I were able to stay in Heber at my fabulous aunt and uncle's house. They were so gracious, letting us come and go as we needed and providing us with food, our own little corner of their home and great company when we were there. 

 

We attended classes on nutrition, family financial planning, communication, clinical trials, dialogue with doctors, eye gaze, genetics, literacy and simply understanding Rett syndrome. 

I saw old friends I hadn't seen in two years, met some for the first time in person after "meeting" online, and created new friendships I know will last throughout the years. 

It is always such an uplifting weekend to be surrounded by a group of people who just understand our particular situation. Some are thrown into Rett syndrome, like us, and others choose to be a part of it. But either way, we're all there learning more because we care and we want nothing less than the best for Leah and her peers. 

It truly was a place for hope.

Miss Ribbons on top of a pile of conference buttons. 

Each attendee wore a button for the individual they knew with Rett syndrome.

 My button.

It made me happy all weekend.

 Friends old and new - Maren, Carrie, Patty, Erica, Marla, Ashley

 One of my favorite Rett girls, Melia. 

I finally got to meet her in person and I am smitten!

 My favorite Erica. 

Everyone needs an Erica in their lives.

 With Tanis, Melia's mom. 

So happy to finally meet her as well!

 With Mitch and Erin, who I had met before (Erin twice), but Ryan met for the first time. 

Fabulous parents.

 The amazing Paige Nues. 

One of the most incredible women I have ever been blessed to know.

 At dinner with the Maughans post-conference. 

So good to see them again and to know they finally have a diagnosis!

we have a walker!

Aaaaaaaaaaaaaaand...she's walking!

With not a minute to spare! Ryan and I leave in the morning for three days for a Rett syndrome conference and then five days in Orlando. And I was so afraid she was going to take her first step while we were gone. 

But, she decided to spare us and took her first steps (six, to be exact) in my mom's kitchen with five witnesses. 

Yay Katers!!

Wasatch Back Ragnar

198 miles

+36 legs

+35 exchanges

+33 hours

+12 friends

+11 months of anticipation

+10 million changes to the planning spreadsheet

+9 kids with babysitters

+8 bazillion pictures

+7 instagrammed photos

+6 best friends from high school

+5 coolers of food (at least)

+4 blisters

+3 legs each

+2 trucks

+1 sweaty wristband 

= an incredible Wasatch Back Ragnar

Team Thirty Schmirty's mantra was "It will be fun" per a video we all watched early on in our training. 

 

And seriously, it was fun! I would do it again in a heartbeat. Ryan and 5 of his closest friends from high school, four wives, one little brother and one new (to us) friend all created Team Thirty Schmirty to run from Logan to Park City, Utah. We each had three legs ranging from 2-11 miles. Some were flat, some were HILLS. Some were easy, some were HARD. Some were cold and some were HOT. Some were hills, hard AND hot! But we did it!

Ryan and I struggled running at elevations a few THOUSAND feet higher and far dryer than our New Hampshire lungs were used to - Ryan especially as he climbed "Ragnar Hill" gaining 1600 feet in elevation to a total of 8881 feet over 4 miles on Guardsman Pass (Then poor Carolee had to run 8 miles DOWN). All three of my runs were "no support" legs, meaning my teammates couldn't drive by me to cheer me on and help, which also means I was running on trails. Trails on mountains with lots of rocks and roots and things to slow me down. But it also means it was beautiful.

I was the lucky runner who got to see the sun rise over the mountains as I ran into the town of Oakley (and then waited for Ben to wake up and wander over to the exchange - nice, Ben).

And I also had the final leg entering the track at Park City High School where everyone was waiting to cross the finish line together. 

It was a fantastic 200 miles with good friends, food and fitness. 

And it was fun. 

And so worth the window decal for my car. 

 First team photo - at exchange 6, waiting for Ryan O.

 Truck 1 - Reed, Nick, Ryan O., Dan, Ben, Eva (the lone girl!)

 Truck 2 - Dani, Chris, Carolee, Bryce, Ryan, Maren

 It will be fun.

 SWAGnar

 Before our first legs.

 Feeling official.

 Ryan's first handoff!

 He's a natural.

 Me, not so much.

 Truck 2 girls.

 After our first legs.

 Best team volunteers and support crew ever!

 Sweaty wristband. So, so gross.

 Sunrise.

 After our second legs.

 About 10 minutes after that.

 Truck 2 girls...and Ryan...feeling rested.

 Truck 2 boys.

 Waiting at exchange 30.

 Feeling anxious...I still had hours to go before my last run.

 Guardsman Pass.

 Chris happy to be done. Ryan ready to run!

 Schooling it.

 Doing what I do best. Or at least what I like to do.

 Almost there!

 We did it!

 Team Thirty Schmirty.

 Bling. Spinny bling.

All showered for our after-race dinner a few days later.