Friday, September 23, 2016

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). 

Thursday, July 28, 2016

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.”

Wednesday, July 27, 2016

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.


Thursday, April 21, 2016

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. 




Thursday, April 7, 2016

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. 

::::::::::::::::::::::::::::::

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!

Wednesday, October 7, 2015

#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!

Sunday, July 19, 2015

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