Super Sparkle Powers!!

It was no joke! These six ladies took off on April Fool's Day to run 190-miles at the Ragnar So Cal Relay Race. With a finish time of 27:08:37, Team Sparkle came in FIRST out of ALL women's teams (6 and 12-women teams)! And 17th overall out of 699 teams!

But they really did so much more. Team Sparkle spread their magic across the country and beyond for the Rett Syndrome community. Each mile was dedicated to someone battling Rett Syndrome or to someone who lost that battle way too soon. 

As each runner headed out for their leg of the race, they pinned on a button with photos of those they were honoring. At home, we all followed through social media and cheered them on. It was not an easy race. We know there were times when they wanted to quit. But their legs kept moving. 

Each time they passed another team's runner on the course, they handed them a bracelet that said "Roadkill for Rett." More than 24 hours of intense inspiration, struggle, joy and hope. 

Thank you for raising an incredible amount of awareness and helping us raise over $36,000 for research -- bringing the three year total to over $120,000!

Bring home some #TeamSparkle magic with this commemorative shirt which includes all the names of the girls and boys who were honored in the race.

 We are taking pre-orders through May 8th and the shirts will ship to you at the end of May. 

CLICK HERE TO ORDER

Runner Spotlight: Vanessa Covington

Time for another runner spotlight! We want to introduce you to Vanessa Covington, an incredible woman, mom and dedicated fighter for our cause. Her daughter Martilee has Rett Syndrome. She is the creative mind behind the awesome hashtag #untilshecan. Vanessa embodies what we all strive for in the face of this big battle against Rett: passion and unwavering effort. Despite any and all challenges thrown her way, Vanessa stays the course and crosses each finish line (on the race course and in life) with resolve and loads of charisma.

"We are inspired by her strength, perseverance and courage! We appreciate all of the miles that Vanessa has logged while raising awareness along the way and are proud to have her on Team GP2C," shares Jen Tucker, GP2C Program Manager.

How did you get involved with GP2C?

 

I don't remember exactly how I first heard about GP2C. I do remember getting a packet in the mail from GP2C in 2008 or so. I immediately knew this was an organization I wanted to be a part of; a FAMILY I wanted to  be a part of. I mean, who could resist that cute orange and pink flower?

What inspired you to become an athlete? 

I was never an athlete growing up. In elementary P.E. I was one of the last to be picked for a team. I attempted volleyball and track in jr. high, but I certainly wasn't a star and decided sports weren't my thing. Fast Forward to 2012.... I saw some of my Rett Mom friends post on Facebook about running the Disney Princess Half Marathon. I saw pictures of them AFTER they had finished the race and they were still ALIVE! It sparked something in me and I decided I wanted to join the team in 2013. It wasn't pretty, but I laced up my shoes and started running!

What is your favorite part of running for Team GP2C?

Running for Team GP2C gives me purpose. Being a Rett Mom, I always feel like I'm not doing enough (not enough therapy, not enough communication, etc.); like I'm always leaving something undone. But I can go for a run and say "I'm done. I DID it!" It is a way for me to feel like I'm physically fighting this Rett battle.

What keeps you coming back?

Having a half marathon to run each February helps me stay motivated to keep training, but the real reason I keep coming back is the Rett family. I consider the Disney Princess Weekend my Rett Family Reunion. Spending time with other Rett Moms (and Dads and siblings and grandparents...) is amazing. We see each other at our worst (a bunch of hot, sweaty messes) after the race and yet we still love on each other.

 

What would you tell other people that are thinking about joining Team GP2C?

Do it! You won't regret it. I'm not saying it will be easy. The training will be tough.... The fundraising takes work.... But it will be so worth it! Don't worry if you've never run before. Start by just going around the block. Don't worry if you aren't fast. Like they say, a 12 minute mile is just as far as a 6 minute mile. I'm still proud of my 12 minute miles!

Share a few lines of your favorite running song at the moment!

I don't run with music. I like to listen to what is going on around me. I've been stopped in my tracks by the beautiful sound of birds singing. I love to hear the leaves rustling. I listen to the rhythm of my steps. If I did listen to music it would be Breathe by Johnny Diaz - "Ready, set go... It's another wild day... When the stress is on the rise in my heart I hear you say... Breathe... Just breathe..."

 

What would be a perfect afternoon for you?

My perfect afternoon would include a porch swing, coffee or sweet tea and a good book!

Share one quote or saying that inspires you to keep going.

Until she can.... Until she can... I repeat that as I'm running. I actually came up with #untilshecan during a difficult run a couple winters ago. It was cold, I hurt, and I just wanted to quit.  I started thinking about why I was running and everything Martilee goes through on a daily basis. I told myself right then, "I will run...#untilshecan!" That phrase motivates me and I love how it motivates so many others now, too. 

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Team GP2C is standing strong together and know that one day Vanessa will walk / run with her daughter, Martilee! We are all in this together #untilshecan!

#untilshecan - An Interview with Kristen Griffin

Team GP2C is made up of runners, walkers, hikers, bikers and swimmers from all across the country. In 2015 alone so far this amazing group has logged over 6,000 miles.

Today we'd like to highlight Kristen Griffin. She runs in honor of her cousin Martilee who suffers from Rett Syndrome. Kristen has run for Team GP2C in our Disney races as well as other races around the country. She was also part of the six-person Ultra Ragnar Team with Sparkle Athletic that raised $54,000 for RSRT, our research partner.

"I will continue to run with GP2C as long as I can run, and until these girls can run along side us."

How did you get involved with GP2C?

My aunt Vanessa ran the Disney Princess Half with GP2C in February of 2013 for her daughter Martilee who has Rett Syndrome. I ran my first half marathon that April as well. I became so inspired by Vanessa's fundraising efforts and doing something so hard for M that after seeing all the pictures and notes of thanks, I decided I wanted to do something for M as well. In June I got married, so M was then officially my cousin! The day we got back from our honeymoon, the Disney Princess Half opened for the 2014 race. I signed up literally within half an hour of getting home because I wanted an opportunity to give back, and GP2C was the only option as their efforts hit so close to home. It was at that race that I really learned what Rett Syndrome can do to a family and why it needs to end. It was also at that race that Vanessa talked me into (in a good way!) completing a half marathon in all 50 states. I decided I'd do it for M.

What inspired you to become an athlete?

I've been an athlete my entire life, competing through high school and college. The real struggle for motivation to continue came after I graduated college and didn't have a coach to expect me to show up and give me direction. I really think that finding GP2C and having Rett Syndrome to fight against came at the right time for me to keep going. I expected to be a "one and done" half marathoner, but now GP2C has inspired me to keep going and do what I can for these girls!

Kristen's inspiration! This is her beautiful cousin Martilee.

What is your favorite part of running for Team GP2C?

My family has grown and I've been welcomed in with open arms! It's so humbling. I've been given a true gift. Not only am I pretty good at running but I ENJOY it! My races are taking me to all 50 states, so I get to meet up with families I've met or ran for, all over the US. I post a photo of what I'm going to wear in a race, and I get so many comments of "thanks for running for my girl" or "my daughter and I wish you good luck!" It's brought me to tears more than once and I love seeing all the words of hope.

What keeps you coming back?

The whole family aspect is amazing. I haven't met nicer or more welcoming people anywhere else. It doesn't matter that some of us can run a half marathon in half the time that others on the team can. We all stay to cheer on the team through the finish. We might see a Flower on a cheek and during the race and get words of inspiration from someone on our team. It's amazing! I will continue to run with GP2C as long as I can run, and until these girls can run along side us.

What would you tell other people that are thinking about joining Team GP2C?

Do it! Do it yesterday! Stop hesitating! These are amazing families you are joining in an amazing fight against a horrible disease!

Share a few lines of your favorite running song at the moment!

I actually don't always run with music. In a race, I hardly ever have music. It's a time for me to escape everything, and sometimes just listening to my feet pounding the pavement is all I need.

What would be a perfect afternoon for you?

Honestly? It would be spent outside, running. I told you I enjoy it! I'd be exploring new trails, stopping every 20 feet to take a photo for my Instagram, so I can share the beauty I get to see with you all!

Share one quote or saying that inspires you to keep going.

"Light can be found even in the darkest of times if one only remembers to turn on the light." Album Dumbledore- Harry Potter and the Prisoner of Azkaban. Yeah, might be nerdy that my favorite quote is from Harry Potter, but that's the generation I grew up in! I love this quote because of its simplicity, and it relates to my Rett Syndrome journey. Yes, it's a horrible disorder that takes away so much from our girls, but when we see their smile it lights up the entire world.


Thank you so much Kristen for all you do to raise awareness and research funds to battle Rett Syndrome. Your energy is contagious and keeps us all on our toes!

Summer Power the Flower Contest!

Summer is filled with so many amazing adventures - maybe you swim, water ski, kayak, surf, hike, or fill your days with summer 5k fun runs??? As you embark on all of these adventure-filled days, we hope that you will keep our girls in mind. Think of them as you tackle that killer wave or do a silly back flip off the diving board - things so many of our girls long to do but can't because Rett Syndrome simply won't allow their bodies to do it.....YET.

We need you to channel that energy, that fun, and all those adventures through our flower to let our girls know they inspire you! and that you believe they will be rockin' their own adventures with you one day soon.

Help us as we #powertheflower and educate the world about Rett Syndrome. We believe that education brings knowledge and the desire to help which leads to donations that will ultimately fund the life-changing research for our girls!

HOW? Enter our contest! It's SIMPLE! and fun!

1. Take photos of your summer adventures - and be sure that our flower is in your picture!
2. Pop over to Instagram to follow us @gp2c and be sure to use the hashtag #summerpowertheflower for your chance to win a $100 Amazon Gift Card.
3. Contest ends August 31, 2015. Winner selected from all submissions at random and announced on September 1st.

Need a flower? For a paper version, print and cut out our flower by clicking the image below. For a digital version you can add to any photo, click here!

#summerpowertheflower
#untilshecan
#rettsyndrome

Hike for Julie

Henry and Bennett with their Appalachian Trail Hike inspiration, Julie

You know that feeling of butterflies in your stomach you get when you are nervous and excited all at the same time? How about that feeling after you graduated from high school and the world ahead seemed so big? And finally, that feeling when you are older and you look around and want to make sure you are making a difference?

Well, have we got a story for you!

Butterflies are building up for father/son duo Henry and Bennett. These two have been hiking together for years and plans to hike the Appalachian Trail are coming true. They leave in just three days on a journey of a lifetime (Monday, June 29th).

Bennett, a recent high school graduate, is delaying his start in college to hike with his dad. Henry is taking five months off of work to tackle the trail.

Their motivation? A little girl named Julie. She is battling Rett Syndrome, a neurological disorder that mainly affects girls. It affects her ability to walk, speak or use her hands. Hiking a trail is out of her reach .... for now.

Henry and Bennett want to be a part of changing that. They hike to push their own physical limits to raise awareness for this devastating syndrome. They hike with the bravery Julie has shown every day in her fight.

Girl Power 2 Cure is honored to be a part of this journey. We are cheering them on, lifting them up every step of the way.

It's not going to be easy. It's 2,189 miles of Mother Nature in all its fury, beauty, and splendor. The trail passes through 14 states and only one in four of those who set out on the journey complete the full distance.

Hiking the trail is equivalent to climbing Mt. Everest 16 times.

They will start in Katahdin, ME with hopes of getting to Springer Mountain in Georgia before Thanksgiving.

To follow their journey, check in on hikeforjulie.org and gp2c.org/hikeforjulie.

We look forward to following their journey and wish them strength, bravery, resilience and joy as they progress. Much like the journey of Rett Syndrome, it is daunting but there is an end in sight if we keep pushing forward.

Show your support on social media with #hikeforjulie! CLICK HERE TO DONATE

9th Grader's Science Fair Project on Rett Syndrome

We love sharing stories like this. Meet Kaylie, a freshman at Pell City High School in Alabama. She was inspired by her little sister who suffers from Rett Syndrome for her science fair project titled: Which genetic mutation type causes the earliest age of onset of the ten most common symptoms of Rett Syndrome?



Kaylie, tell us more about your science fair project on Rett Syndrome. First, why did you choose this topic?
I chose to do this project on Rett Syndrome because of my sister Julie Grace. I did it all for her. After going to many therapies and doctors’ appointments with her, I have become very interested in not only Rett Syndrome, but also genetics. I hope to go to school to become a Physical and Occupational Therapist.

How did you decide on the specific project?
I originally just looked on the Science Buddies website for a project that had to do with genetics. I found one that talked about different mutations in Cystic Fibrosis. My mom showed me the InterRett Output Database. I saw that they had the average age of onset of epilepsy, so I combined that with the Science Buddies project and after a lot of thinking, I came up with my project. “Which genetic mutation type causes the earliest age of onset of the ten common symptoms of Rett Syndrome?”

What was your goal for this project?
My main goal of the project was awareness. I just wanted to put it out there because really only my close friends know about it. Plus it gave me an excuse to talk about it a lot!

Kaylie (far right) with her sisters

What was the most difficult part for you?
I don’t think there was really a hard part of this project. I loved doing it and reading the little stories people would add in about their girl walking or talking! I just found the whole thing very interesting.

What did you learn from the process?
I guess if I had to go back and change anything I would ask for the ages in months because converting each one into months individually wasn’t my favorite thing. I learned so much from this project! I read so many different versions of explanations of Rett Syndrome. I learned so much about it and the mutations.

What are some things you want people to know?
I want people to learn that Rett Syndrome affects 1 in every 10,000 girls and it could affect anyone! I want people to know that the girls are in there and they know EVERYTHING we say or do around them! And I want people to know that early diagnosis is the key because therapies can start sooner and that a cure is coming! I think some good advice is if you want to then go for it! Tell everyone you can and talk their ears off about it if they will let you! And don’t be afraid to ask for help or an explanation because some of the scientific stuff can get pretty confusing!

Kaylie's mother, Melanie, shares "There are times I let myself think back to the days before Julie Grace’s diagnosis and it seems like a different lifetime. But in the year and a half since Rett Syndrome entered our lives, our girls’ love for their sister has shown through in everything they do. I’m very proud of all four girls: Julie Grace for her strength and perseverance, her older sisters’, Kaylie and Emily’s,  love for her and their constant fight to make sure that everyone knows about Rett Syndrome and her twin sister, Jerri, for keeping us all a little more “real.” 

Kaylie's project won locally and went on to the regional competition at UAB in Birmingham, AL where she was awarded First Honorable Mention in her class. She received the Surgeon General's Award of Excellence for her presentation. Congratulations Kaylie! Thank you for educating others about Rett Syndrome.

Team Zoe Superheroes!

There's something special that happens when Team Zoe steps out to raise awareness and funds for Rett Syndrome.  As you can see from the photos above, this group (led by Zoe's mom Amy) moves mountains for this special little girl and her fight against a syndrome that has stolen her voice and use of her hands as well as her ability to do so many things a little girl should be able to do: dance, run, skip and play.

Girl Power 2 Cure recently awarded our first annual "Superhero of the Year Award" to this great team and their city, La Porte, IN. 

Here is a photo of Zoe and members of the team with Mayor Milo. The La Porte community has played a vital role in Team Zoe's successful fundraising. They have helped raise over $40,000 and rank as the number one city for our Facebook fans and website visitors. 

photo by Matt Fritz

Click here to read the front page story from La Porte's local paper.

We can't thank Team Zoe enough for their commitment, passion, creativity and positive impact on the Rett Syndrome community and our organization.