Featured Racers

November/December 2017: Kristina Hackney

Kristina, mom to Kara, has embraced the running for Rett motto over the past few months. After an enduring training schedule, she recently completed her 2nd half marathon and is not stopping there. Kristina is an inspiration to many including her daughter, Kara. Read her story here 

1. Please share your relation to Rett syndrome and how it has impacted your life.

My daughter, Kara, was diagnosed at 2 years old after almost a year of testing to try and find out why she wasn’t meeting her milestones. Since that diagnosis we have immersed ourselves in learning everything we can about Rett. We joined the support groups, and last year I made the decision to become a Family Empowerment Representative for my home state. Recently we were able to participate in Phase 2 of the Trofinetide trial, otherwise known as NNZ-2566. We were so encouraged and realized that the need to raise funds towards research was super important and necessary.

2. How did you decide to participate in this race and what can you tell us about it?

Earlier this year, my dear friend talked me into doing a half-marathon with her, and introduced me to the world of running. I knew there was a Rett Racers team, so I figured what better way to spread awareness and honor Kara than to train hard for a cause! Together my closest friends and I formed Kara’s Hope and dedicated ourselves to our motto: “We Run Because She Can’t!” I didn’t do much training for my first half, but did train for my second half, just this past Sunday (Nov 18th). It’s very windy here in Oklahoma, so wind has been the biggest hurdle. I am trying to qualify to be a “Half Maniac”, so I have more runs coming up. My third marathon is scheduled for March 24th, and my fourth on April 7th. Our team will also be participating in the Oklahoma Memorial marathon on April 29th.

3. What was your main goal while you ran for Rett? (Fundraising, awareness, both)

We run every race in our team shirts or our Rett Racers shirts, so that if people mention something about them, we have the opportunity to share about Rett Syndrome. I would eventually like to add the RettSyndrome.org logo in there somewhere. We encourage and invite our friends on social media to help us meet our goal at every race. We also are trying to invite people to join our team, and help spread awareness as well. I know a couple of us have invited coworkers to run. Some of my other friends have asked their employers to become sponsors. The world needs to know about Rett, and how close we are to a therapeutic treatment. People who don’t have a connection to a rare disorder don’t realize how financially, emotionally, and physically draining research can be; but a cure cannot happen without research, and research is expensive. Without awareness, people won’t donate, and without donations, research can’t happen.

September/October 2017: Cara Lummis

Cara Lummis, aunt to Emmy, has decided to lace up her running shoes this fall to run for her niece and many others affected by Rett syndrome. The race has turned into a family affair and the support for Emmy is growing daily. We spoke with Cara to learn more about her relationship with Emmy and why she decided to become a Rett Racer. Read her story here 

1. Please share your relation to Rett syndrome and how it has impacted your life.

My niece, Emelia Foster, was diagnosed with Rett syndrome at age 2 and a half. Our nickname for her is Emmy. Emmy is my sister Colleen's second child. I will never forget the day the Foster family got Emelia's diagnosis. My children and I were on our way to their house to go swimming. Colleen called me on my way and told me that the test results were in. Emelia had Rett syndrome. As a family, we tried to help them process through this news. Since then, we have tried to raise awareness about Rett. Not many people are familiar with this disease, but I can tell you first-hand how it impacts a life. Our lives have changed because of it, and it's time more people knew about the devastating effects of Rett syndrome .

2. How did you decide to participate in this race and what can you tell us about it?

I am running the Hot Chocolate 15K race on Sunday, October 29. I am currently training for the Hot Chocolate 15K race by going out on weekly runs to build my endurance and speed. I would love to run at my quickest pace so that Emmy will be proud of me! It is the most important to me that she has the best life possible, and that is why I am running.

3. What was your main goal while you ran for Rett? (Fundraising, awareness, both)

I decided to become a Rett Racer to raise a lot more awareness of the disease, as well as offer the opportunity for people to donate for a cure and help Rett families. Our team is called "The Lou Crew" because the name Lou is a family name. My mother, who passed away in June 2014 was Jennifer Lou, I am Cara Lou, and Emelia is Emmy Lou. I have high hopes in being a Rett Racer so people will be educated about what Rett syndrome is, and how they can help. So here's to a great run on October 29, in the name of Emmy Foster, and any other child who has Rett syndrome. Auntie Cara loves you Emmy!

July/August 2017: Ezra Gwilliam

Ezra Gwilliam, father to Elise, started a commitment to getting healthy a few years ago. Fast forward and now Ezra is running races along with Elise any chance he gets. This summer he is yet again lacing up his running shoes for a half marathon. Read about his great story below! 

1. Please share your relation to Rett syndrome and how it has impacted your life.

Having a daughter with Rett Syndrome has taught me several things but of greatest impact Elise has taught me to savor small moments. From her, this comes in brief eye contact, cute giggles, and her amazing smile. I am learning to have patience in hard moments of desperation and quiet moments of sadness. The pinnacle of all the lessons is that I've learned to love more deeply and appreciate the goodness of life more profoundly. I'm not sure I'd have that perspective without Elise and my teacher and Rett Syndrome as my tutor.

2. How did you decide to participate in this race and what can you tell us about it?

A few years ago the bathroom scale reached a few new heights . . . and I had this realization that I needed to get healthy and maintain that health so I will be able to provide for Elise. Combining that motivation with the understanding that Elise wasn't going to play t-ball, or soccer, or dance in a ballet, Lindsey and I tried to think of something she could do that would get her outside and be more active. So we found a make-shift running stroller and gave it a whirl and haven't turned back since. We look forward to many, many more races. Elise loves the cool breeze the stroller provides, being outside, and especially when we run along the river!

3. What was your main goal while you ran for Rett? (Fundraising, awareness, both)

Our goal was to just help raise awareness and help our immediate friends more fully understand Elise and her story.

4. What else would you like to share?

Elise is an angel and it is a blessing to have her in our family. Running has been therapeutic for me and a way to deal with stress and emotions. Sometimes while running a song will strike a cord with me and I'll think of Elise or look down at her smiling, increase my pace, inhale all those complex feelings and pound the pavement just a little harder and a litter faster conquering my own fears and dealing with the circumstances that life as forced upon us. Which . . . is much more positive than a lot of other methods! :)

May/June 2017: Stephanie Boyd

Stephanie got paired up through a running program with a woman named Jessica who is a young adult with Rett syndrome. Stephanie has participated in many races on behalf of Jessica and this Spring will be completing the Kentucky Derby Marathon in Jessica's honor. Read about her great story below! 

1. Please share your relation to Rett syndrome and how it has impacted your life.

I first learned about Rett Syndrome when I was matched with a running buddy through the I Run 4 Michael non-profit organization. I was matched with Jessica, who has a Rett Syndrome diagnosis. Her mother was excited to have someone running for Jessica and was happy to help educate me on what Rett Syndrome is and how it affects Jessica.  Through this relationship, I started reading more about the diagnosis and the impact it has on the individual's health. 

2. How did you decide to participate in this race and what can you tell us about it?

The Kentucky Derby Festival Marathon is held annually in Louisville, Kentucky the weekend prior to the Kentucky Derby.  I wanted to train for another marathon and it seemed like a great race for me because it is here in Kentucky and my running buddy, Jessica and I are both Kentucky girls!  I also applied and was accepted to be an ambassador for the marathon this year.  I started my training plan in January and dedicate each mile that I run to Jessica. I send her weekly (sometimes more frequent) messages with pictures about my run and tell her how I am doing with my training.  Between January and race day, I will have totaled well over 400 miles for Jessica.  

3. What was your main goal while you ran for Rett? (Fundraising, awareness, both)

Initially, my goal was to raise awareness for Rett through running. I tell everyone I can about Jessica and her diagnosis and share information about Rett Syndrome on my social media and blog.  As I continue to run more races this year, I would like to also participate in fund raising as I learn more about that process. Evidence based approach to care for children and adults with this diagnosis is critical.

4. What else would you like to share?

While running marathons/long distances is considered a difficult task, I have to say I always try to run with joy in my heart. I truly believe I am given this healthy body so that I can run and inspire others to reach their maximum health potential.  When the training becomes hard, or when I am having a bad run, I think of Jessica. She has faced more adversity and tribulations in her life than most people, yet she still wears a huge smile on her face. She inspires me to train harder and to run through difficulty and reminds me that while life is not always easy, it is a gift we all need to use to our fullest potential.  Every race I run for her, I know she is there with me in spirit, pushing me towards the finish line. 

March/April 2017: Brooke Kingery

Brooke Kingery, mom to Elin has used running as as a therapeutic way to deal with her daughter's diagnosis of Rett syndrome. This spring she will be be participating in the Rock & Roll Half Marathon in Nashville. We spoke with Brooke to hear about her story.

1. Please share your relation to Rett syndrome and how it has impacted your life.

Our daughter Elin was diagnosed with Rett Syndrome just before her 2nd birthday.  She had not been meeting milestones for quite some time, but hearing the words ‘Rett Syndrome’ was in short, earth shattering.  Our whole world was turned upside down. Though it’s been almost 4 years now, I feel that we are still getting used to life with Rett syndrome.  Elin has weekly therapy sessions, countless doctor appointments; she has gone from using a walker to a wheelchair and just recently had surgery to have a feeding tube placed. Though some days can be extremely difficult and challenging, we really do try to have a positive outlook and find the happiness in every day. We remain hopeful, it’s all we have.  

2. How did you decide to participate in this race and what can you tell us about it?

The first half marathon I ran was the same year of Elin’s diagnosis. I liked the idea that I could raise money for research while having an outlet to focus my grief. As I began training the idea that I was running because Elin could not really resonated with me and gave me determination and strength I never thought possible. I realized I was setting a good example for our children and that felt really good. Our family recently relocated to Franklin, TN from Indiana and my sister and I decided to run the Nashville Rock ‘n’ Roll half marathon. Training for this run has been different because it’s so hilly, which presents its own challenge; but the warmer weather is very welcome! Though my sister and I can’t train together, it’s been really nice to have her support and encouragement.

3. What was your main goal while you ran for Rett? (Fundraising, awareness, both)

My main goal for this race is a combination of raising much needed funds for research, spreading awareness as well as personal achievement.   

January/February 2017: Steve Laufer

Steve Laufer, uncle to Katie, has been an avid marathon runner for years. In 2013, after hearing of another Rettsyndrome.org event, Steve decided it was time to run for Rett and he hasn’t looked back. This spring he will be completely yet another marathon in honor of his niece Katie. We spoke with Steve to hear about his story.

1. Please share your relation to Rett syndrome and how it has impacted your life.

I first became aware of Rett Syndrome almost 20 years ago when my brother and his wife informed me that their young daughter was diagnosed with having Rett. It was their 3rd and last child.  Over the years, I've had the chance to see how much work it is to care for a child with Rett syndrome, through many family events and shared vacations.  They've also kept me abreast of all the medical and social trials that they've had to endure, including issues with school systems, finding caretakers and many other routine issues that most people don't need to think about.  They have also sponsored strollathons to raise funds and awareness of Rett research.  

2. How did you decide to participate in this race and what can you tell us about it?

I had been running marathons off and on for many years.  In 2012, at age 54 and 7 years since my last marathon, I tried another but was not really motivated and didn't do particularly well.  Later that year, my brother sponsored another Strollathon and somewhere there was a link to the Rett Racer program.   After talking with my brother, I decided to run the Sedona Marathon in 2013 with the Rett Racer program in honor of my niece Katie. It was a very positive experience as it gave my running a purpose beyond just exercise and health related benefits.  I also surprised myself, finishing 16th overall in a field of several hundred runners.  A few months later, the Boston Marathon tragedy occurred, and I decided to try and qualify for Boston again (I had run it once before); and use it as a Rett Racer fundraising event. Later in 2013, I ran a 3:12 at the St. George, Utah marathon to qualify for Boston but it was too late to register for Boston 2014.  I did run the Boston Marathon in 2015 with the Rett Racer program which also was a very positive experience and then did so again in 2016.  Last year I had moved from Arizona to Georgia, so this year I'm running a more local marathon in Asheville, NC.  At my age, I seem to only have 1 marathon a year in me.  I haven't had too much luck with the long training runs so far this year, one week it was sub-freezing temperatures, another I ran 19 miles entirely in the rain, and another week I had to deal with strong winds.  I'm hoping that over the next 6 weeks, the weather starts cooperating as far as running goes.

3. What was your main goal while you ran for Rett? (Fundraising, awareness, both)

I'd have to say both fundraising and raising awareness of Rett Syndrome are equally important to me.  The company I work for, General Motors, also kicks in a pre-specified amount for these types of fund raising efforts that their employees participate in, though they wait until after you run the race to donate.  



November/December 2016: Steph Novacek

We are excited to announce Steph Novacek as our November/December Rett Racer of the Month. A good friend to Joslyn's mom, Steph, has watched Joslyn grow over the years. This fall she decided it was time to combine her love for Joslyn with something challenging: a half marathon. We chatted with Steph to hear her inspiring story. 

1. Please share your relation to Rett syndrome and how it has impacted your life.

Joslyn is the daughter to my best friend from college, Monique. Monique and I were pretty close from the get go in college and our friendship continues today. Only now, we are both mothers and not college students- we share funny and frustrating stories with each other about being a mother (and wife). We try to sneak away to a craft show, or for a quick dinner, but we always seem to make time to take a “mom break” and just release. We lean on each other and can pretty much do or say anything to each other, it is a constant comfort to know we are there. So, my relation to Rett syndrome is through the eyes of a Mother of Rett.  Through conversations with Monique we have shed sad and happy tears, I hear her struggles, frustrations, and a tired voice, but she always talks about the victories, the proud mom moments and the fun stories.  Rett has impacted my life because I see “through a mothers eyes” how Rett syndrome has shifted a family. I’m not there everyday so I will never fully understand but to kind of put my view “through a mothers eyes” into perspective let me explain. Through conversation with Monique the other day we were talking about garages (random, I know) and she mentioned that it’s getting cold, and she has to back the van out of the garage to open the doors and slide in Joslyn, by the time she gets everything closed up, gets Cooper (Joslyn’s twin brother) in the car and herself in the car, the car is back to cold. Even though she warmed it up for 20 minutes before loading Joslyn. Then Joslyn sits back there just freezing because she gets cold so easy. So just through conversations I hear of the things that many people take for granted, including me. Hearing how hard Monique and Jamie (Moniques Husband) work to make sure Joslyn is included and is growing and developing and learning is so inspiring. It’s easy to always put your children first, but Monique and Jamie go above and beyond the call of duty for this one. As a mother myself, Jamie, Monique, Joslyn and Cooper have impacted my life and shown me there is so much to be grateful for – even when situations are hard, there is always something to be thankful for.

2. How did you decide to participate in this race and what can you tell us about it?

I have always loved to run and I’m so incredibly grateful that I’m able to run. A 1/2 marathon run has been on my dream board for as long as I can remember. Because of Joslyn, that dream turned in to so much more. Running for a purpose has much more meaning and makes each step not seem as tough. I signed up for the Good Life Halfsy in Lincoln, Nebraska and I ran with Joslyn on my heart.  Let me tell ya, my first Half Marathon was a tough one – but I’m ready for the next one. My goal is to run one each year for Joslyn and to be a small piece of finding a cure for Rett Syndrome.

3. What was your main goal while you ran for Rett? (Fundraising, awareness, both)

My main goal as I ran for Rett was to bring awareness. I didn’t want to bring attention to me, this was not for me. I wanted to bring attention to Joslyn and Rett syndrome. I can’t tell you how many people during the race commented on my shirt or asked a question about what I was running for. Even after the race, people were asking about the purpose of my run. That made me smile bigger than crossing that finish line – knowing that others out there are aware. But in addition to their awareness, them knowing how they can support and help. 

4. Anything else to add?

As the months and years go by, I have seen Joslyn (and Cooper) grow through Monique's eyes- stories and experiences. I’m so inspired by her, she is an incredible mother. Monique also works hard to educate everyone around her about Rett Syndrome, she has researched, read, learned, educated and has experienced Rett. This, this is a pretty inspiring piece from this families story. Not only do Monique and Jamie work hard day in and day out with their children at the top of the priority list, they work hard to educate and teach others what the day in the life of Rett Syndrome means. They help so many people see that there is a cure out there somewhere and that everyone can help support finding a cure. Monique and Jamie make sure Joslyn is living an abundant beautiful life and they are grateful for the life they are creating. Which makes me pretty grateful for the impact they have made on me and my families life. 

October 2016: Joey Razzano 

We are happy to present Joey Razzano as our October 2016 Rett Racer of the Month. An avid runner for years, Joey has decided to combine her passion for her daughter and fundraising with running. This October she completed a grueling marathon and spoke to us just prior to the race about her goals and wishes! 

1.Please share your relation to Rett syndrome and how it has impacted your life. 

Jade is my youngest child and is 13 now. She was born 12 weeks prematurely so we thought her development delays were from that. Around 18 months, her progress slowed and within 6 months we had the diagnosis of Rett Syndrome. I went to my first IRSA conference in San Francisco and was overwhelmed. I remember watching all the presentations and thinking “Well, she won’t be affected by seizures, scoliosis, osteoporosis, g-tube, wheelchair, orthotics, hypotonia, loss of hand function or speech. She’ll be one of the lucky ones.” Nope. Slowly but surely she has developed every one of those things and more. I charted all the different pieces of her life where I have to be her voice – the list is huge. The way it has impacted my life is that I became a ferocious advocate for Rett syndrome as well as all people with disabilities in the Northwest. Jade and I have testified numerous times at the Capitol and have got 3 laws passed here in Oregon. We’ve installed special needs swings in parks, gone on a Make-a-wish cruise, and held 11 successful Strollathons since 2006. this race and what can you tell us about it?

2.How did you decide to participate in this particular race?  

I didn’t decide to run this marathon on my own. I ran the Dublin marathon for the Arthritis Foundation in 1997 and crossed it off my bucket list. Well, over the past few years, we have been fortunate enough to have terrific caregivers for Jade enter our life. They are really part of your family, you know? Lindsay Vaughn, her main caregiver, started running races with me about 18 months ago. We ran 6 half marathons in 2015 together. I’ve been a runner all my life but never had a running partner so this was such a positive and supportive thing for me. In January, Lindsay came over and said “I signed up for the marathon!” and I knew I had to do it with her. The important part about being featured for Rett Racer of the month is that it’s not about me. It’s been tremendously moving to know that Lindsay cares so much for my daughter that she’s dedicated herself to running a marathon for her. It is no easy task to prepare for this race. Her dedication and devotion to our family is truly humbling. She is so involved with Jade and taking her places in the community that she often gets mistaken for Jade’s mom.

3.As you train for this you are also fundraising for Rettsyndrome.org, what are your goals with that?

 We immediately knew that we wanted to wear Rett shirts for the marathon and built a team called the Rett Racers.  Because I usually hold the Strollathon in early October and the race is on October 9th, I had to pick an earlier date for the Stroll. Then, during the summer right after our 10 mile run, I came down with pneumonia. Working full time, preparing for the Strollathon and trying to get miles in, was not a good mix so I had to modify my goals and expectations (as with so many thing in Rett world!) I would like to say I have a goal of raising lots of money but I’m having to settle in trying to raise as much awareness for Rett syndrome as I can and just try to walk the race with the goal to finish. I feel like I’m letting Lindsay down by not being able to keep up with her during the race but my body is not cooperating. My husband is wondering why I’m still committed. Jade doesn’t have a choice to walk or run so I feel like I have to do it for her.

4 .Anything else we should know? 

Jade loves being in the races with us. The smile on her face is priceless. She loves the wind and the fast movement. She has taught us all the live life to the fullest!  I wanted to make the stroll into a race but just don’t have the bandwidth. However, the NWRSF started a Race for Rett in June several years ago and now I support that. It takes 2 hours to drive up there and starts at 9 am but we love to support the local families. That way, they can do a race in June and a stroll in October.


August 2016: Don Searcy

Don Searcy may be a grandfather but he is full of spunk and fire. Don is the grandfather to Scarlett, a beautiful 4 year old with Rett syndrome. On September 17th, Don will be participating in the Tehachapi Gran Fondo event, a bicycle race that is 104 miles long. He will ride the first 100 miles alone (no easy feat!) and then finish the last 4 miles with Scarlett hitched on in tow! We are so impressed with Don’s enthusiasm and love for his granddaughter that we wanted to feature him as our “Rett Racer of the Month”. We asked Don a few questions about the race and his family. Read his answers below.

1. Tell us what Riding for Rett is and what inspired you to do it?

Back a year ago my idea of a bike ride, strolling with my wife and sometimes Scarlett in tow, was down to the local coffee house and home. Then one day, I realized that my darling little granddaughter may never be able to walk or talk to us, let alone ride a bike. That's when I decided that I needed to move forward and do my part to find a cure for Rett syndrome. I shared that I wanted to ride my bike to raise money, for this cure, with my daughter and wife. Now at 58 years old and out of shape, my wife told me that if I didn't train and get in condition, I couldn't ride. She didn't want to me to go out and hurt myself. So I started this journey to ride and ride and ride some more until I reached a goal of 500 miles in 3 months. I worked hard and was able to complete the 500 miles with two weeks to spare. At that point, I signed up for the Tehachapi Gran Fondo, 104-mile race and started my quest to Ride4Rett. It's kind of funny, while on this journey, I asked my daughter if her dad was crazy? Here I am, a 58 year old man on a borrowed bike, riding and training like it was the Olympics. She said probably, but every time I look into Scarlett's eyes, I know the reason that I'm putting in mile after mile.

2. Tell us about your granddaughter and your relationship:

Scarlett is my eldest granddaughter, of two, that has captured all of our hearts with what she is going through. Every time she’s around us her eyes and smile tells us how much she loves us. She loves to swim, with a flotation device, and do motorboat, loves ice cream and pizzy (pizza). Although she loves to ride in her little trailer, behind the bike, she's unable to train with me because she lives 2 hours away.

3. What do you hope to accomplish by participating in this event?

It is my goal to not only bring awareness to Rett syndrome but to raise money to help find a cure. It's my hope that Scarlett will qualify for a clinical trial, if mommy and daddy approve, to see her progress and have hope to hear "I love you" come from her lips. It would be my joy for her to come running into my arms and give me a big hug.

Our goal is for $100,000 to help find the cure, but with all the girls & boys affected all over the world, I am hopeful that we would raise over $1,000,000. Since Rett syndrome is not limited to the United States, with my crowdfunding campaign, I am hopeful we will obtain worldwide donations as well.

Who knows what a cure for Rett Syndrome will accomplish, maybe it will unlock a drug or treatment for Autism, Cerebral Palsy or more. https://www.generosity.com/community-fundraising/riding4rett

4. Anything else we should know?

I didn't go into this to change the world, just help. If we can break the Rett barrier, then who knows what our Rett Angels can accomplish. I don’t know if I'll ride any more races after this one, but if it's in God's plan, I will ride as much as I can to raise money and awareness until a cure is found.