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.

Our New Professional Advisory Board

We are excited to announce the formation of a GP2C Professional Advisory Board (PAB)! The board consists of medical professionals as well as legal, marketing and fundraising experts who will advise and assist GP2C in its mission to raise awareness, support families and fund research for Rett, a debilitating neurological disorder.

We value the advice and assistance of these professionals which are crucial to the future of our organization and our ability to provide quality programs and services to the Rett Syndrome community, our volunteers and our supporters.

Visit the GP2C Professional Advisory Board web page to read all about these amazing new additions to the GP2C Team!

Our First Ambassador - Ali Vincent!

Everyone here at Girl Power 2 Cure is doing the signature Ali "jump" in the air! We are thrilled to be working with Ali Vincent, the first female winner of The Biggest Loser, as our first official "GP2C Ambassador." Not only does she embody resilience, ambition and the power of positive thinking, Ali has a huge heart and has fallen in love with our Rett girls.

Ali with Oaklynn who has Rett Syndrome

We first met Ali at the Disney Princess Half Marathon where she immediately put on a GP2C shirt and became a member of Team GP2C.

 

Ali shares, "The moms behind Girl Power 2 Cure instantly touched my heart by sharing their daughters' stories, and I knew I wanted to do anything and everything I could do to help." 

Ali has added information about GP2C and Rett Syndrome on the Ali Gives section of her website, and is going to help us grow Gardens of Hope around the country.

"Girl Power 2 Cure allows opportunities for everyone to get involved," says Ali.  "I advocate finding ways to feel empowered through growing/building strength and confidence so true beauty can shine through. I can't think of a better way than growing a Garden of Hope within your community or wearing the GP2C flower on your running shirt to remind us that through small acts of kindness, smiles can bloom on little girls faces everywhere."

Like the title of her new book, "Believe It, Be It," Ali is ready to also believe in the power to cure Rett Syndrome and wants to play a big role in making that dream come true.

She says, "I am passionate about helping to bring awareness to Rett Syndrome and raise funds to support continued research. Research has already proven that it's not an IF-a-cure-is-possible, it is a WHEN-a-cure-will-be-available."

Thank you for believing in our Rett Girls Ali! We look forward to lots of great work together in the months ahead.

National Volunteer Service Week: Welcome Mimi!

We'd like to take this opportunity during National Volunteer Week to introduce you to our new Volunteer Coordinator, Mimi Burns!

Mimi serves on our Mothers' Advisory Board and is a stay-at-home mother of two. Her oldest child, Sophia, has Rett Syndrome.  She is passionate about raising awareness for Rett Syndrome and doing everything she can to bring together volunteers of all ages and locations.

Mimi says, "My goal is to help raise awareness, to make friend connections for Rett Girls, and to give everyone the hand they need to fundraise, which holds the key to a cure for the thousands of girls affected by Rett Syndrome."

Mimi is always trying to find the perfect balance between coordinating Sophia’s extensive medical care, therapies, and home schooling while attending and coordinating the busy life of school, sports and extra curricular activities for younger brother, Calan.  She believes that it is important for both her children to understand the need for and the responsibility of volunteers.  Mimi and Sophia can often be found at her son's school, or out in the community, raising awareness, and giving back when and wherever possible.

Mimi shares her outlook: "In my own way, in my small little corner of the world, I have tried to give back....  To the community which embraces my family and I. To the schools that educate my children. To the strangers who have become friends, who travel along the same path as I do while loving someone who has Rett Syndrome.  I volunteer my hands, my time, talents, and sometimes just my listening ear or a strong shoulder.  I believe we all have the responsibility to volunteer, I am fortunate enough that I can do it with Girl Power 2 Cure, an organization I believe in with my whole heart."

Mimi lives in Crown Point, IN with her two children, Sophia (11) and Calan (9) along with their two dogs, Jade and Zoe.  We are thrilled to have Mimi working with our volunteers!

Ready to volunteer for GP2C? Email Mimi to get started! 

Did you know Girl Power 2 Cure is an official certifying organization of The President's Volunteer Service Award Program?  You can work towards a Bronze, Silver or Gold Service Award with the hours you volunteer for our cause. Learn more about the award criteria here.

Million Dollar Milestone!

Grow baby grow! We have surpassed $1 million raised since our founding in 2006. The GP2C flower is sprouting up by the thousands all over the world, bringing the story of our beautiful, brave girls who are battling Rett Syndrome to light. We couldn't be more proud and more in awe of our families, supporters, donors, event hosts, staff, board and volunteers - from our largest corporate sponsors to the little 2-year-old sporting a flower on her cheek. We are doing this together.

And we have a lot more to do. We have big dreams. Dreams of better awareness, dreams of better education, dreams of treatments and of cures. Most of all, dreams of helping these girls live out THEIR dreams.

The flower is symbolic of something fragile yet powerful in its beauty, strength and ability to weather storms - just like girls living with Rett Syndrome. All of these girls deserve to blossom.

Thank you for your joining in on our fight. Not involved yet? Please reach out. We have lots of flowers to grow!

Click below to visit our photo albums and see what we have been up to!

New Folks!

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 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).

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Shelley Schmidt
“I am so excited to be working with Girl Power 2 Cure!  I have a feeling that some exciting things are going to be happening very soon in the Rett world!  Rett Syndrome is what McKenna has, but it is NOT who she is.  Living with Rett Syndrome really helps me put my life into perspective.  I have learned what is truly important.”

Shelley has a BA in Special Education, a Master’s degree in Reading, and she is currently working on a second Master’s degree in ESL.

Shelley has been a special education teacher for 23 years.  She teaches in an inclusive classroom, and she has presented on inclusion at Rett conferences in Illinois.  She lives in Plano, Illinois with her husband, Jim, and their three children, McKenna (17 RS), Bryson (12), and Braylon (4).

visit McKenna's page

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Whitney Cooley
"Being Oaklynn's mom has been amazing. She has taught me so much more than I could ever teach her. These girls are so inspirational and deserve to live the life they have always wanted. Being a part of the Girl Power 2 Cure community has been great. I am so grateful my sister found it shortly after Oaklynn's diagnosis. It has brought me hope, encouragement, strength, and love. Let's help find these girls a cure!"

-Mom of 2 girls and owns a vinyl business in Arizona. Daughter is Oaklynn.

visit Oaklynn's page

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Mimi Burns
When Sophia was diagnosed with Rett in 2006 I was overwhelmed by the (lack of) positive information available, lack of knowledgeable doctors, and the statistics that were presented in regards to quality, and quantity of life.  I felt there was little hope, and so little to believe in.... It was years later when I learned of Girl Power to Cure, and our lives were forever changed.  I learned that there was HOPE!  That we were not alone, and that together~ we CAN make a difference.  A simple invite for Rockin' for Rett gave me an insight to who and what GP2C was really all about.  Strangers welcomed us into their home, shared meals with us, and treated us like family.  My son learned that there are kids, all over the world with a Rett sister~ just like him. Through Girl Power we all formed friendships, and found a place to turn to for strength, guidance, advice, and support. Girl Power 2 Cure is a symbol of strength and courage.  Its flower, a simple reminder that if we believe, anything is possible.  I am honored to be a part of this organization, and am looking forward to meeting and helping other families on this journey. 

Mimi lives in Indiana with her son Calen and daughter Sophia.

visit Sophia's page