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

Welcome Aboard! Announcing our three newest team members!

We are excited to announce the addition of three amazing Rett moms to our Mothers' Advisory Board! What is the MAB? It is a group of dedicated mothers who have daughters with Rett Syndrome who volunteer to help GP2C in many ways.

First and foremost, they serve as mentors to Rett families who have reached out to Girl Power 2 Cure for support and camaraderie. They help us spread awareness for GP2C and Rett Syndrome. They host really fun events! And, they serve as a sounding board for everything going on here at GP2C.

Let's meet these ladies! (Click here to meet the rest of our team when you are done!)

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

Tanis Anderson

"When Melia was diagnosed in August 2011 I was heart broken, but it wasn't too long after that I found Girl Power 2 Cure and realized there was this whole group of amazing people who wanted to help and support me in any way they could. The next summer I met Kelly and Ingrid and fell more in love with the organization and knew it was something I wanted to be a part of. So in February 2012 I ran with them in the Disney Princess Half Marathon and plan to run until Rett Syndrome is cured, and then I hope Melia will run it with me."

I feel honoured to be a part of the Mother's Advisory Board so that I might be able to help and support others like I have been these last few years!

visit Melia's page

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

Niki Tebbe

"Quinn was diagnosed with Rett Syndrome in May of 2005. Our world was turned upside down.  As our family was adjusting to the struggles and challenges of life with Rett Syndrome, I met Ingrid Harding. We had many conversations about the organization she was developing to help the families and girls with Rett Syndrome.  I was in awe of her vision and goals for Girl Power 2 Cure.  You could say I have been with Ingrid since “the beginning." She has  formed an amazing organization that is mainstreaming awareness of Rett Syndrome, and offers ALL of us a place to turn for strength, advice and support.

I truly believe that our family was chosen to be a part of this incredible journey to find a cure for Rett Syndrome.  We are so proud to be Quinn’s parents. She is our inspiration every day.  Her patience, and love for life gets us through the toughest of days.  

I am honored to be a part of the Mothers' Advisory Board  and am looking forward to meeting and helping other families on this journey."

Niki  has been a Registered Nurse in the Emergency Room for 20 years. She lives in Illinois with her husband Cliff and their children: Quinn, (10 RS), Ryker  (10), and Spencer (9).

visit Quinn's page

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

Ronda Trester

"At the time of Courtney's diagnosis we were simply heart broken, scared, helpless, and lost beyond what words can describe.  Every doctor we went to never heard of Rett Syndrome and the specialists that were familiar with Rett Syndrome wanted to prepare us for the worst.  Our daughters future flashed before our eyes.  When it's your daughter, when it's your child, you will move Heaven and Earth to search for answers and to fix what is broken. 

We are blessed to be surrounded by some amazing friends and family that have stood by our side through the good times and the bad.  A couple of years after diagnosis we attended a golf tournament in our area for Rett Syndrome.  The event represented Girl Power 2 Cure and there we met a remarkable family, The Brooks.  We knew at that point we were meant to be with this organization.  A non-profit that is filled with hope, dedication, support, and loving caring individuals.  Spreading awareness and raising funds for continued research is key. It has been proven Rett is reversible! 

I am excited and honored to be part of such an inspirational group.  I am looking forward to meeting and helping other families through this Rett journey.  To empower the hope, embrace the possibilities and turn our dreams into realities. Together if we believe we can achieve!"

Ronda has been employed for over 10 years at financial institution. She resides in Little Elm, TX with her husband, Wally Trester, who also volunteers on the Board of Directors; and their two children Deven (15) and Courtney (8 RS).

visit Courtney's page

31 Tweets for Rett Syndrome

Get your Twitter accounts tweeting this month for Rett Syndrome Awareness Month! If you don't have an account, get one - even if it's just for the month.

 

Here are 31 Tweets for Rett - one for each day of the month.

What do the symbols mean?
# means that you are adding that term to the search feature so everyone can pull up that phrase and see what has been posted.
@ means you are directing it to someone's twitter wall

Have some fun and add in your favorite celebrities to these posts! Use the @ symbol to reach out to friends on twitter, etc. It's fun! (Once you have a twitter account, you can search for people and find out what their account name is.)

We are @girlpower2cure. You can also just go to our page at www.twitter.com/girlpower2cure and retweet (share) from there!

=====================================================

NOTE (Tweets that are highlighted have an image to go with them - see images to copy at bottom)

=====================================================


31 Tweets - October is #RettSyndrome Awareness Month - share this flower to help

A little girl is born with #RettSyndrome every 90 minutes. #gp2c.org

Can't speak. Can't walk. Can't use hands. But you know everything going on around you. It's #RettSyndrome. gp2c.org

It's #RettSyndrome awareness month. Girls living trapped unable to speak or use their hands. Hear their stories. girls.gp2c.org

October is not just for #breastcancer awareness. Women are suffering debilitated their whole lives with #RettSyndrome.

Have you seen these cool Purple Cards? 190,000 more people learned about #RettSyndrome this year. BE NEXT. www.girlpower2cure.org/how-to-help/thepurplecard

Baby girls are born "normal" but begin to lose motor skills between the ages of 1-3 years old. It's #RettSyndrome.

#RettSyndrome is caused by a single gene mutation that leads to underproduction of an important brain protein.

#RettSyndrome is the leading genetic cause of severe impairment in girls- most cannot speak, walk or use their hands. gp2c.org


Despite physical disabilities, girls with #RettSyndrome are functioning mentally at a much higher level than previously thought.

What is as prevalent as Cystic Fibrosis, ALS and Huntington's but you have not heard of it? #RettSyndrome. It's a girl thing.

#RettSyndrome has been reversed in the lab and could be first curable neurological disorder. gp2c.org

Why retweet this @GirlPower2Cure flower? It is always in bloom with hope & positive energy. Join me in fighting #RettSyndrome.

Need a challenge? Try one day in my shoes. #rettsyndrome girls.gp2c.org

Friendship isn't about who you've known the longest. It's who walked into your life, said, "I'm here for you" and proved it. #girlpower2cure

Expectations.  Have them.  Rett Girls can do amazing things.  #rettsyndrome #girlpower2cure #physicaltherapy  

Not all superheroes wear capes!  #girlpower2cure #rettsyndrome

Believe in the power of believing in yourself! #rettsyndrome #girlpower2cure

I think I can, I think I can, I think I can....I know I can  #rettsyndrome #girlpower2cure

Look into their eyes and hear what they are not saying; because of #rettsyndrome their eyes speak louder than their voices ever will.

In honor of #rettsyndrome awareness month, I am rockin' the @GP2C flower and you can too! gp2c.org/shop

1:10,000 doesn't seem like many but if it's YOUR child, it's too many #rettsyndrome

There's real hope for a cure. #rettsyndrome #gp2c gp2c.org

I know a girl that puts the "rett" in pRETTy. Actually I know lots of them, let me introduce you:  http://girls.girlpower2cure.org/

#RettSyndrome steals more than a voice or the ability to walk. It can also take a precious life. #nomoreemptyarms

What can girls with #RettSyndrome do? Amazing things! WATCH: http://www.youtube.com/rettwecan.

Join the hundreds of people running for girls who can't. #rettsyndrome #untilshecan gp2c.org/teamgp2c

I've met some amazing girls with #RettSyndrome.  I invite you to take a moment to meet some of them. http://girls.girlpower2cure.org/

I've covered a lot of miles this year but so has @GirlPower2Cure. Join me in their fight against #RettSyndrome. gp2c.org

How can you help a girl with #RettSyndrome? Give them a voice and get involved! http://www.girlpower2cure.org/how-to-help/volunteer.aspx

Closer than ever to a cure. Hundreds of thousands girls & women can be saved. Join our fight against #rettsyndrome. gp2c.org

 

Caught Being Awesome

Rett Syndrome is a journey. It can be a long, tough journey. There are good days and bad days -- and then sometimes there is that moment in time when someone comes along and makes it an AWESOME day.

Now that school is back in session for most everyone, we want to kick off our new campaign - "Caught Being Awesome!" Yep! You get to catch people doing great things.

What kinds of people? People who play a role in the life of a Rett Girl.

What kinds of things? If you are a Rett parent, it might be a special needs teacher that created new boards for the speech generation device without you even asking, or your doctor who gathered the latest Rett Syndrome research for you “just in case” you had not seen it. OR maybe your child’s 1:1 aide organized an amazing game at recess being sure that your daughter was fully included. Who knows, it just might be your next door neighbor that helped her kids set up a lemonade stand and surprised you with the money to make a donation to GP2C in your daughter’s honor. 

If you know a Rett Girl, it might be seeing her bus driver make that extra effort to get the temperature just right on the bus, or seeing a peer in school reach out to communicate and help.


All around, there are people showing a little bit of awesome, and we want to help you acknowledge them!   

Simply fill out the nomination form and let us know a little bit about your nominee and their awesomeness.

What happens when someone is caught being awesome? Freebies and Prizes of course!

Here are a few things we are doing to help you celebrate them:

1. Get 10 free "Caught Being Awesome" postcards in the mail to hand out to folks you want to acknowledge.

2. If you submit their contact info and story, we will contact them plus send them a thank you email and CBA graphic to post online. If they give us permission, we will also share their story on our CBA blog and on Facebook.

3. All nominees submitted during the month of September will be entered into a RAFFLE DRAWING. Each week in October, we will select one nominee at random to win a gift certificate to the GP2C store. The best story will receive our GRAND PRIZE which is a choice of spa treatment or iTunes gift card for both the nominator and the nominee ($100 value).

Our New Space!

Eight years ago, when Sarah was 4, I sketched out the GP2C flower and started to build Girl Power 2 Cure in my mind. Since then, we have brought together an amazing team of over 30 people, all working virtually. It has always been a dream to have office space and start to build a physical base - a place for people to come to work, learn and volunteer.

Last summer I started more seriously thinking about this step and started to dream out loud with my 10-year-old daughter Gretchen every time we went by a place that was for lease.

When I signed the lease and brought her over to see, she said, "Mom! Dreams really do come true! Remember when you thought it would never happen? It happened!"

It happened because of our amazing supporters, our forward-thinking Board of Directors, and a plethora of volunteers waiting to come and help.

If you build it, they will come - right?

Here is a tour of our Field of Dreams - or in our case, GARDEN OF DREAMS!  We will keep sharing photos and stories as we make the place our own and have the impact we are excited to have in the Rett Syndrome community.

GP2C High School Volunteer helps three girls in their battle against Rett Syndrome

Why Volunteer, Why Rett Syndrome, Why Girl Power 2 Cure?

These are some tough questions, directed at an Illinois High School Junior, Laura Irwin, when she reached out to us to volunteer for Girl Power 2 Cure.

Her answers had us double-checking that we were actually speaking to a 17-year-old, and not a 37-year-old. ;)

Laura is a competitive rowing athlete, an honor student, and one of our newest volunteers for GP2C.   She reached out to us in February while working on a school research/community service project for her IGSS (Integrated Global Study School) class.  She wanted to know how she could help, and how she could make a difference in the lives or days of a Rett family.  

Laura says she chose Rett Syndrome, and GP2C for her project because the syndrome intrigued her; she was captivated by the families, and found herself believing in our girls, and the mission behind GP2C.  

She had no previous experience volunteering, and has yet to meet a single Rett girl, yet she has spent countless hours researching, learning, talking to parents, and helping give some of our girls a voice.  Laura’s project entailed making a Communication Eye Gaze Board for the families she worked with, and presenting her final project to her classmates. She worked with three families, and tailored each communication board to fit the needs of each individual Rett girl. 

Watch this beautiful video that she put together for us - and see her Eye Gaze Boards in action!

We asked Laura "What were the best and worst parts of doing this project?"  She said there was not a worst part, only a slightly difficult part.  “Cutting the boards out, and finding a good system that would work for each girl was challenging, just when I thought I had a good system, I realized I didn’t.  Once I figured it all out, it was full of rewards.” 

Laura’s highlights include: Speaking with the families, seeing pictures of the girls being able to communicate using her boards, knowing that she made a difference in their lives, and sharing her findings and experiences with her classmates.

“Speaking with the families, realizing how similar the girls are, and yet how unique and individual they each are was eye-opening.  I thought I would be helping them, teaching them, but I think I learned the most in the end.”

GP2C would like to thank Laura for the countless hours she put into helping enrich the lives of some of our Rett families.  She gave her time and talents.  She helped open the door to communication, and she shared her new-found love and respect for our Rett community with her school.  In doing so, she made a difference.

  

Volunteers come in all ages, shapes, sizes, and from different places. Contact us to see how YOU can help.  Learn more.

Volunteer Spotlight!

Volunteers are the only human beings on the face of the earth who reflect this nation's compassion, unselfish caring, patience, and just plain loving one another. ~Erma Bombeck

We asked Kelly Shubert, mom to Emma, and host of Rockin' for Rett - Oley, PA about the volunteers who helped make her most recent Rockin' for Rett a success. 

"It takes a village to raise a child...and I am part of the most awesome village of all.  This event would not have happened without their support.  Each of them has gone out of their way," she said.

"A special thanks does go out to the amazing chefs of the event.  The Fire & Spice competition BBQ team of Eric, Patrise and Sammi.  Time and again, they simply said YES!  They took over a large portion of the event without hesitation even amongst a busy volleyball season with Sammi!  They ran back and forth all day between the event and Sammi's volleyball tournament, all while making sure all the food was hot and ready to eat, and all the food related details were taken care of.

They give their time, and share their talents.  They do this all from the heart, with no expectation of anything in return."

Thank you Fire & Spice!

Want to learn more about how you can make a difference?  Contact our volunteer coordinator, Mimi Burns and learn how you can help.