Runner Spotlight: Molly Barker

Molly Barker, Founder Girls on the Run International and The Red Boot Coalition

Team GP2C has a new team member for the Disney Princess Half Marathon in February!

Molly Barker is the founder of Girls on the Run International, the program that uses running to empower girls. She will help us power the flower on the course to raise awareness for Rett Syndrome! In addition, we are honored to have her as our guest speaker for our team dinner.

She inspires people with her work daily and we can't wait to share our weekend with her.

A four-time Hawaii Ironman triathlete, Molly used her background in social work, counseling and teaching to develop the GOTR in 1996. The program has served a million girls and earned her numerous accolades, including the Daily Point of Light Award, given by President Obama and Former President Bush in a ceremony at the White House.

After retiring from the organization in 2013, she was asked to join the Bipartisan Policy Center’s Commission on Political Reform, a Washington group seeking ways to bridge the political divide in Congress. By the time its 29 members of the commission made recommendations, however, Barker had decided the real problem was bigger than Congress. It was all of us.

That was when she began formulating an idea for The Red Boot Coalition, a new organization whose name was inspired by the gift of a pair of red boots from her daughter Helen.

In August 2014, Molly put those conversation-starting red boots to task and set out to get to the root of what was causing these polarizing conversations. From Charlotte to Las Vegas she listened to hundreds share their fears, concerns and hopes.

“Ultimately, leadership comes down to one very simple question,” she wrote in the telling of her cross-country journey. “Am I willing to make the effort to see, to listen, to look for the humanness that rests within each person I encounter?”

Molly is the mother to two children:  James, a fashion designer in New York and Helen, a bass player in Charlotte.  When asked recently what her mom does for a living, Helen responded, “My mom listens and loves people for her living.”

Molly shares, "I am honored to be a part of Team GP2C!  I believe so much in what Girl Power 2 Cure is all about and am hopeful that with their support, all those challenged by Rett Syndrome can look forward to a cure."

We asked Molly a few questions for this runner spotlight:

How long have you been running and what got you started?
I started running when I was about fourteen. My mom started running in her early 50's and I would run with her. Our time on those runs created a sacred space where I felt felt safe to be myself.

What inspired you to run with Team GP2C?
I am friends with Ingrid Harding. I have known about Girl Power 2 Cure for many years. Our paths crossed recently and she reached out to me to see if I could attend his year's event.

Share a few lines of your favorite running song at the moment!
From Seal's "If it's in my mind it's on my face"

If I could fly, I'd spread my wings
In time to free you from these foolish things
And we won't be back for sure
If it's in my mind, it's on my face
Wish I could take you to another place
And we just might miss your call

What would be a perfect afternoon for you? Sitting out in a small Adobe house in the middle of the desert in spring time. Having some tea and then heading out for a long run on dirt trails, far from the city and people. Follow that up with a delicious meal and watching a Netflix movie or reading a book...my kids by my side.

Share one quote or saying that inspires you to keep going."This too shall pass." "And wherever you go, there you are."

Thank you Molly! See you in February!

Want to learn more about our Disney Princess weekend and come to our team dinner?
CLICK HERE. 

Runner Spotlight: Karla Perez

Meet Karla! She is the super dedicated mom to sweet Luz who battles Rett Syndrome, a neurological disorder that mainly affects girls and robs them of their ability to speak, use their hands ... or run. She says she doesn't consider herself an athlete, but dictionary.com says an athlete is "a person trained or gifted in exercises or contests involving physical agility, stamina, or strength." In addition to her involvement with Team GP2C as a runner, she is also Luz's caregiver - a role we know requires even more than physical agility, stamina and strength -- but mental as well. We applaud Karla for all she does and are honored to have her run with Team GP2C to help us cure Rett Syndrome!

Team GP2C Runner: Karla Perez

How did you get involved with GP2C? 
My daughter was diagnosed with Rett syndrome on 9/24/09. Since day one I promised her that I would do everything to get educated and involved to make her life easier. So far, I think Luz is proud of me. I heard of GP2C in 2014 after I saw the pictures of the Disney run. It looked like so much fun so I decided to give it a try.

What inspired you to become an athlete? 
I don't really consider myself an athlete. It’s so hard for me to make time to go out for a run or train. I did my first 5K with GP2C in 2015 and I loved it. I was the only team member to sign up for that race. This year I went back and did my first half marathon. It took me almost 4 hours but I did it.  I'm inspired by Luz and all the children with Rett Syndrome. I will do anything to help find a cure for Rett. If that requires me to become an athlete then yes sign me up. I run inspired by Luz and on HOPE for a cure.

What is your favorite part of running for Team GP2C? 
That most of the team is made up of Moms or Dads like me. Most of us have never run before. We all run with the same goal in mind. A CURE for Rett Syndrome. We all are inspired by our angels and that's what makes our team stand out.

What keeps you coming back? 
Luz! I see her struggle 24/7, 365 days a year yet she never gives up and continues to SMILE. If she can continue to fight I can go back for one more run. #UntilSheCan

What would you tell other people that are thinking about joining Team GP2C? If there's a race you have to do it is the Disney Princess run. The location is perfect, the weather is perfect plus you are at the happiest place on the world. The team is amazing and provides all the support you need leading to race day.

Share a few lines of your favorite running song at the moment! 
When I go out for a run I just look for inspirational running songs but I recently heard this song and I liked it a lot. I believe by Yolanda Adams...and that's what I do, Believe … because I believe a CURE will come in Luz's lifetime.

What would be a perfect afternoon for you? 
I live in South Texas so its very humid and HOT. A perfect afternoon to go out for a run would be any day with temperatures under 80 degrees with a cool breeze.

Share one quote or saying that inspires you to keep going. 
Courage doesn't always roar. Sometimes is the quiet voice at the end of the day saying I will try again tomorrow - Mary Anne Radmacher

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Want to run with Team GP2C at the Disney Princess Half Marathon in February? You can enter for a chance to win race bibs for you and a friend, plus hotel room!

CLICK HERE FOR DETAILS
 

Ten Years in Bloom … and Growing!

by Ingrid Harding, Founder and President of Girl Power 2 Cure

When the idea for Girl Power 2 Cure first came into my head, I didn’t tell anyone. I was so excited and could imagine the flower popping up all over the place in support of our girls and shining a beacon of strength, beauty and hope around the world.

I worked sketching different logos and flowers, I toyed with the name, I had notebooks full of ideas. But, for some reason, I couldn’t even name the folder on my computer GP2C. I named it “Rett Idea.”

I was afraid to jinx it I guess.

Then one night at a rooftop fundraiser in New York City, I looked out over the buildings and saw my message. “Girl Power” was spray painted in graffiti on the wall across the street. That was it -- GIRL POWER!

When I launched, the flower got mixed reviews. Some people felt the colors and look were too happy for such a devastating disorder. My response? When you’re sick or sad or lonely, do you want people to pull down the blinds and turn out the lights? Or let the sun in and bring you flowers?

Fast forward 10 years.

Ten years of 14-hour work days, 7 days a week. Ten years of struggling emotionally as my own daughter battled against the Rett monster. Ten years of highs and lows of research breakthroughs and girls who left us too soon to have a chance at benefiting from any of them.

Recently, the best surprise came in my mailbox. A gift I knew would come but didn’t know when or how. Page 2 of the Mayer Johnson catalog. Our flower. Our little flower printed in the legend to represent Rett Syndrome. It was completely unexpected. I was excited that Susan Norwell's Flip Books for Rett University were included in the catalog, but had no idea about being included in the legend.

"That it’s our flower representing Rett Syndrome is indescribable. I am so grateful for each and every staff member, volunteer, family, teacher, donor, student, business and mentor who has helped tend to our flower along the way; nurturing, sharing and representing to the world what we are all about."

-- Ingrid Harding, GP2C Founder and President

Any product in the catalog that is suited for a student with Rett Syndrome NOW has the GP2C flower next to it. Our flower, that flower I dreamed of adding meaning and representation of Girl Power and Rett Syndrome to educational tools and resources suited especially for our girls, our families, and our educators and therapists working every day to give our girls quality communication, language and literacy.

Our GP2C Flower, representing hope, possibilities and encouragement that now today, we understand so much more than we did 10 years ago about all our beautiful and smart girls can do. Tools and resources that work for them. The only other special call out was for Autism with the puzzle piece logo. And our GP2C flower was even listed ahead of them.

 

I'm not embarrassed to admit that I jumped up and down then ran around the house showing everyone in my family. Then I took a picture of it and started to share with staff and then everyone I ran into. We've come so far as a community in encouraging and inspiring others to see what we see -- competence, intelligence and worth.

Our vision is literally coming true and we all, including each and every one of you, have worked hard to carve a place for Rett in the special needs community. It’s our time, our girls' time and for our flower to grow even bigger than I could have ever imagined 10 years ago on that rooftop in New York City.

That it’s our flower representing Rett Syndrome is indescribable. I am so grateful for each and every staff member, volunteer, family, teacher, donor, student, business and mentor who has helped tend to our flower along the way; nurturing, sharing and representing to the world what we are all about.

Special thanks to Mayer Johnson and parent company Tobii Dynavox for seeing and believing what we do- hope, possibilities and worth for all of our girls. So hold on world, here we come! #powertheflower #untilshecan #dreambigforher.

For more information about Girl Power 2 Cure as well as news about our latest fundraiser The Revlon Million Dollar Challenge, please visit girlpower2cure.org and dreambigforher.org.

Ingrid Harding, mother of a daughter with Rett Syndrome, founded Girl Power 2 Cure, Inc. in May 2006. She wanted to find a way to engage young girls with their special needs peers after watching wonderful bonds form between her own daughter and her classmates in school.

Ingrid hopes Girl Power 2 Cure, Inc. will bring mainstream awareness of Rett Syndrome and help raise the millions of dollars it will take to cure tens of thousands of suffering girls.

Ingrid is also the co-founder and a Trustee of the Rett Syndrome Research Trust. Prior to Girl Power 2 Cure, Inc., Ingrid was CEO Program Director for PlayhouseRadio.com, an Internet children’s music station.

Girl Power 2 Cure's office is in Amelia Island, Florida where Ingrid resides with her husband Peter and three children: Pierce (18), Sarah (15) and Gretchen (13). 

Runner Spotlight: Kelly O'Donahoe

Runner spotlight time! Meet Kelly O'Donahoe from Apopka, FL.  We celebrate Kelly who has been an incredible addition to Team GP2C. "Not only is she a strong and impactful role model," shares Jen Tucker, GP2C Program Manager, "but she's rocking the #girlpower! We appreciate her compassion and are proud of her leadership, drive and dedication. She continues to make a difference... one step at a time!"

Team GP2C Runner: Kelly O'Donahoe 

How did you get involved with GP2C? 
I was running the 2014 Princess half marathon and while at the Expo and walking past the GP2C booth, Ingrid brought me into the GP2C booth (just her and I were there) to talk about Rett Syndrome. I had no understanding of what Rett syndrome was and Ingrid had such passion/drive speaking that it made such an impression on me that I didn’t forget about GP2C.

I walked away that day with a flower in my hand and Ingrid’s voice in my head. Fast forward to 2016 Disney Princess sign ups. I hadn’t planned on signing up for the Disney Princess at all. I let sign ups come and go. Then realized that I wanted to run the Princess and looked at the charity list. Low and behold GP2C was there again and was my only choice so I inquired and was put on a waiting list. I received an email from GP2C that they had a Glass Slipper bib, not one but two so my husband and I signed up without hesitation. Shortly after I was talking with my daughter Michelle who told me about Lily Detweiler (who is Michelle’s friends sister). Lisa (Lily’s Mom) and I hooked up and it’s been an awesome journey since.

What inspired you to become an athlete?
I don’t consider myself an athlete. However, I do enjoy running and trying to maintain a healthy lifestyle. We started running after my daughter Alyssa ran the 5K at the 2013 Disney Princess run. My husband and I run quite a few races together each year and we now wear our GPC2 running shirts at most races.

What is your favorite part of running for Team GP2C? 
The cause, the relationships and of course the families. We hope to meet more families this year. The friendship with Lisa, Lily and her family has been amazing so glad we met.

What keeps you coming back? 
Knowing I can make a very small difference in the Rett World keeps me coming back.
The mission to help find a cure #untilshecan #powertheflower

What would you tell other people that are thinking about joining Team GP2C? 
That they wouldn’t regret it, all of the dollars for research will help these families. Once, you come out and meet families with Rett Syndrome, you will know what your passion is and what you must do to help. It’s such a blessing to be a part of the GP2C team and they need your help.

Share a few lines of your favorite running song at the moment:
This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me

What would be a perfect afternoon for you?
To have all of my children together under one roof to spend time with each other.

Share one quote or saying that inspires you to keep going:
“When you think about quitting, think about why you started.”

Sisterly Love and Celebrating 51!

Meet Kristi and her two sisters, Kourtney and Kari, who planned a fun adventure in June to Discovery Cove in Orlando, FL. Kristi, who has Rett Syndrome, recently celebrated her 51st Birthday! Happy Birthday Kristi!

Earlier in the year, Kourtney and Kari traveled to Arizona, but could not bring Kristi which bothered them both immensely. Kourtney shares, "I decided we were going to figure out a way for us to have a sisters' trip with Kristi.  Fast forward about 7 months and Kari gets an opportunity to go to Discovery Cove with a group she is a part of and she can bring guests. She calls me and asks if I'm ready to do this. My answer was “yes” of course! Now to plan the trip to make sure Kristi's needs were met and all three of us came back in one piece."

Dinner, dancing, a ride around the lazy river, swimming with the dolphins and more! Kourtney shares some of the fantastic highlights from their girls trip with us:

“The two-day trip couldn't have gone better. At dinner, Kristi was all smiles and loved dancing with her little sister Kari. Discovery Cove was amazing and Kristi loved every minute, except when we put her on the lift to get in the lazy river.  She wasn't too sure about that or the lazy river at first, especially after we had to go through the waterfall…but once she realized her little sisters were doing all the work and she could truly be lazy, she was the happiest girl in the world! She was laughing at her little sisters trying to stay afloat while keeping her afloat. After the lazy river and lunch, it was our turn to swim with the Dolphins. With some help from the wonderful lifeguards and staff at Discovery Cove, Kristi was able to participate in all parts of the dolphin interaction except the actual swimming. Though it was a quick two-day trip, it was two days filled with memories, laughter and moments that no one can replace.

The best part of it was seeing Kristi's smile throughout the whole trip and telling Rett syndrome to back off.  This was something Rett was not going to take away from us. 

Those memories are ingrained in our heads and the smile on Kristi's face are ingrained in our heart.  Now off to plan our next trip.”

This awesome weekend looks like it was packed with #girlpower, sisterhood, and some fun in the sun!

Do you have a favorite summer activity or outing that you’d like to share with GP2C? Email jen@gp2c.org

Looking for summer activities and resources? Check out our Rett Girl Summer Magazine by clicking here!

Power On!
GP2C

Additional note: Kourtney has just started as a Rett University Coach helping girls with Rett Syndrome learn to communicate. Learn more about the program and Kourtney here.

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.

Claire Oliver Joins the GP2C Board of Directors

Claire Oliver, new member GP2C Board of Directors

Girl Power 2 Cure is excited to announce the addition of a new member to our Board of Directors.
Claire Oliver, an elementary school administrator, has over 17 years of experience in education and a strong passion for non-profit work. Claire shares that learning about Rett Syndrome and all that GP2C is working towards accomplishing is what inspired her to get involved. "I have a deep passion for helping children receive the education they need and deserve, and love the work Girl Power 2 Cure is doing, especially with Rett University."

Claire adds that seeing how much Rett girls need advocates to ensure they receive quality education is what motivated her. She says, "I’ve seen firsthand just how hard these girls work. When given the right education plan and environment, they have so much to say. I want to be a part of changing the way the world sees these beautiful girls and all they CAN DO!”

Additionally, Claire is passionate about endurance sports - something she has been involved in extensively for the past 14 years. She is an avid runner, as well as a triathlon and marathon coach since 2003. She has coached over 1,000 runners to the finish line and holds an RRCA (Road Runners Club of America) certification, USAT (USA Triathlon) coaching certification as well as certification by Dave Scott as a triathlon coach.

Claire lives in Irving, TX with her fur family and in her spare time enjoys running, sewing and volunteering her time for worthwhile causes.

We look forward to working with Claire and know her educational and endurance training background will be an incredible asset to two of our biggest programs: Rett University and Team GP2C.

Joyce was caught being awesome!

Joyce Samples is a very special grandmother. Her willingness to help and her constant support of her daughter and granddaughter seem to know no bounds. She is a problem solver, and when she sets her mind to getting something done, it is going to happen.

We recently asked Joyce to make "lovies" for GP2C to send out to our girls as birthday gifts in September. In less than a month, she made 40!

Evie with her "lovie" that her Mimi, Joyce, made for her and 40 other girls who have Rett Syndrome.

"She is awesome, not just because she is my mom or Evie's Mimi, but because she is willing to be there for all the Rett girls and their families," said Candace (Joyce's daughter)

Joyce goes above and beyond to lend support to GP2C through volunteering. She is AWESOME and we appreciate her endless efforts. THANK YOU JOYCE!

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Want to nominate someone or someplace you caught being awesome?! Click here.

GP2C Launches New Superhero Dolls!

From chalk, to digital, to print to plush! Our GP2C Superhero is now huggable!

Our little superhero, Anna Cate, first appeared as a chalk drawing at a 5K race in Richmond, VA in November 2012. The artist, Jen Lange, then took her to the digital world. Soon after, Jen created different superhero girls inspired by each of our board and advisory board members' daughters.

Once we had such an amazing group of little superheros, we started to print them on banners and postcards and more!

We thought, "they are so cute and just jump off the page!" hmmmm maybe they CAN just jump off the page and we can make them into dolls so that everyone can have a superhero inspired by their daughter or another little superhero in their lives!

Introducing the GP2C Superhero Doll collection!

CLICK HERE TO ORDER

Each doll is 26" tall. You can choose hair and eye color as well as skin tone. There is a limited number per week that we can have made, so order soon if you want in time for the holidays!

Thank you to Emilie and Anna Cate Rabke, Adina Nickerson, and Jen Lange as well as Sabrina Nalbantian of Le Petit Creations!

3rd Annual Purple Card Giveaway

"Our Purple Card goes in every Christmas card - that way family and friends can check out her link and learn more!" 

"I love being able to hand people a card with facts and a place to learn more.When our daughter was in the hospital we handed it to residents, nurses, surgeons. We had to send someone home to get more after doctors and social workers kept coming in and asking for them.We have been told that they are they best idea ever for a special needs kid with a uncommon disorder. I could go on and on. Every member of our family has a handful in their wallet."

"Our Purple Card is sent home to all of our daughters classmates to help introduce her to her peers and their families along with a letter from me. It has been an amazing way to start building relationships at school."

"The purple card helps explain Rett Syndrome when I do not have the words, or when my daughter is with me and I do not want to talk about it in front of her. I can't say enough great things about them."

We hear stories like these and dozens more from families whose lives were changed because of their Purple Cards. We understand that a need is there to educate people about Rett Syndrome, to share YOUR story. The Purple Cards can help do just that!

And....since October is right around the corner, that means Rett Syndrome Awareness Month - we want to help you be prepared. We are giving away a set of 1,000 Purple Cards to TWO lucky winners! 

DRAWING DETAILS: 

Open to everyone worldwide! To enter, please share with us a message you would put on a billboard to tell the world about Rett Syndrome! (You may enter once per day.) In addition, you can earn extra entries by following GP2C and RettGirl.org on Twitter.

Two (2) winners will be drawn at 10 pm EST on Wednesday, September 17, 2014. Each winner will be notified via email and announced on our GP2C facebook page immediately following.

If you are not one of our two lucky winners you can order your personalized cards online for our special price of $25 for up to 1,000 cards: www.gp2c.org/thepurplecard 

As an added bonus, if you sign up for a free GP2C web page (see examples), your daughter's custom link will appear on the card so you can share more photos, tell your story, raise funds for research, and link to your blog plus other cool features!

CLICK HERE TO ENTER

Power the Flower!

We are putting a little twist on the traditional "Flower Power" saying! It's time to get the masses involved to help us POWER THE FLOWER!

How do you Power a Flower? 

You wear one!

You sign your name on one!

You post one!

You share one!

WHY?! To put the power behind our Girl Power 2 Cure flower to raise awareness and research funds for Rett Syndrome, a severe neurological disorder that mainly affects girls.

This summer is POWER THE FLOWER's big kickoff!  We are going big with our new campaign with the help of two minor league teams and their cheerleaders in Jacksonville, FL: The Axemen/Axemaidens (rugby) and the Suns/Sunbeams (baseball).

Here is a pic of our first cheerleading meeting! They will be wearing the GP2C Flower on their uniforms throughout their season. We will have a booth and volunteers at seven games reaching over 42,000 spectators! We will be taking $1 donations in the stadium for signing a flower to add to a huge Garden of Hope and putting flower tattoos on the fans!

Live in the Jacksonville area or know someone who does? Sign up to come out to one of the games and help! Click here to sign up!

We need your help to POWER THE FLOWER which we soon hope see sprouting up across the country! All proceeds from the Garden of Hope go to research.

You can share our flower right now on social media! Change you Facebook/Twitter profile pics or post to Instagram. 

#gp2c #girlpower2cure #rettsyndrome #powertheflower

Claire's Crusade: Rett University VIP Founding Member Partner

 

Today we are excited to announce a partnership with Claire's Crusade, a Rett Syndrome nonprofit based in Cleveland, Ohio (learn more at www.ClairesCrusade.org and ‘Like” www.Facebook.com/ClairesCrusade). 

On March 15, 2014, Girl Power 2 Cure launched its first educational initiative, Rett University - an e-learning platform specifically designed for educators and therapists of Rett Syndrome students. Experienced professionals share their cutting-edge knowledge on how to support their students with Rett Syndrome and push them to their highest levels of academic, physical and personal achievement.

Sean Reilly, Claire's Crusade President and Co-Founder, shared "It is with confidence that we are proud and honored to present GP2C with $10,000 on behalf of Claire's Crusade, our Board of Directors, Officers and numerous donors. We are beyond excited about the opportunity to partner with Girl Power 2 Cure as a VIP Founding Member of Rett University.

"Rett University has the potential to fill an immense void in the education system by providing a mechanism for educators to access the tools they need to effectively teach students with Rett Syndrome and successfully unlock their potential.  We look forward to collaborating with GP2C to expand upon this initial contribution and establish an ongoing scholarship program to Rett University so that many have the opportunity to achieve.”

Ingrid Harding, GP2C Executive Director, said "Claire's Crusade is deeply passionate about helping girls with Rett Syndrome. Their commitment to Rett University is invaluable. We look forward to working together to educate as many girls and their support teams as possible."

Learn more at www.rett-u.org and www.gp2c.org.

195 miles for 195 girls

So Cal Ragnar Relay Race - April 4-5, 2014

MEET TEAM SPARKLE - ULTRA RAGNAR RELAY TEAM FOR GP2C

Not only is Team Sparkle an amazing group of dedicated women returning to defend their ultra women victory last year, but Team Sparkle has taken this opportunity to run not for themselves, not for the glory of victory, but for girls with Rett Syndrome — girls who cannot run at all. 

Team member Allison Foley says, "Rett Syndrome affects my 10-year-old daughter Emma, and I can speak first hand about the devastation of this neurological disorder that has stolen Emma’s independence.  But what Rett Syndrome cannot steal from Emma or any of the girls it affects, is their courage, bravery, strength, determination and hope—traits that we believe are characteristic of our team and of this great race."  

The team is sponsored by Sparkle Athletic, (a company inspiring athletes through the power of sparkle), will be running the entire race in pink & purple Sparkle Athletic skirts and superhero capes in honor of Girl Power 2Cure and their superheroes—girls, like Emma, affected by Rett Syndrome.  Each mile will be dedicated to a girl suffering from this devastating disorder. Funds raised will be donated to the Rett Syndrome Research Trust.

195 miles for 195 girls who cannot run.

Allison:
Mom of two, who runs for her daughter because Rett Syndrome has stolen her daughter's ability to run & do anything independently. Now Allison runs for her & all the girls who can't, so that someday they will. You can follow her on instagram at @afoley09.

Carrie:
Mother of 4, with not enough time to sew, run, thrift, DIY, mountain bike, & crochet... but she sneaks it in anyway. Author of the popular blog This Mama Makes Stuff & you can follow her on twitter/ instagram at @thisiscarrie.

Danica:

She works. She runs. She eats. Then she blogs about the whole process. Author of the popular blog Chic Runner & you can follow her on twitter/ instagram at @chicrunner.

Elise:

She's an Ironman triathlete who's got a BIG sweet tooth. The Cupcake Activist burns calories so she can eat them. Resides in the city of Orange. Author of the popular blog Cupcake Activist & you can follow her on twitter at @cupcakeactivist & on instagram at @elisewallace.

Jocelyn:
She's Canadian, a matchmaker & overall a very enthusiastic runner. You can follow her on twitter/ instagram at @jcbonn.

Missy:

Wife. Mom to 4 crazy kids. Marathoner. Ironman. Large sweet tooth in search of the perfect cupcake. Author of the popular blog Sugar Coated Athlete & you can follow her on twitter at @sweetathlete & on instagram at @sugarcoatedathlete.

Thank you ladies! Can't wait to "follow" you on the course in just a few weeks!

Follow the fun on Facebook!: https://www.facebook.com/Ragnar4rett

Want to support the team with a donation? Visit http://run.teamgp2c.org/goto/teamsparkle