A Special Father's Day Week - Words from the Dads

Happy Father's Day! We asked Rett Dads to be our guest bloggers for this past week on our Rett Girl Blog. RettGirl.org is Girl Power 2 Cure's Family Resource website. We want to be sure to share these great stories with you on the GP2C blog, too! Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.
Pictured above are some of the dads who will be sharing their thoughts with us this week.

READ POSTS BY THESE GREAT DADS!
Pete Curry, Maisy's dad: "No Laughter? No fun? No thank you."
Bill Hileman, Byrnn's dad: "Be Happy No Matter How Large the Obstacle"
Sean Schenk, Kristyn's dad: "I just have to love Kristyn with all my heart."
Bill Farnum, Ella's dad: So Weak So Strong  
David Luntz, Maryjane's dad: "My Little Country Girl"
Roger Brooks, Juliana's dad: All Our Girls Are Special  
Justin Johnson, Nora's dad: Just a Girl 
Manny Gutierrez, Anna's dad: If Not Just for a Little While

GP2C Cards by Sandra Magsamen

We just added something very special to our store! Look at these wonderful cards created for us by internationally acclaimed artist, designer and author Sandra Magsamen!

"Believe in the power of believing in yourself."

"It was my honor to create art for Girl Power 2 Cure. My dream is that my art touches lives in a meaningful and positive way, one heart at a time," shares Sandra.

GP2C Board Member, Emilie Rabke, says she was introduced to Sandra's work about eight years ago in a boutique shop in her hometown.  She was instantly drawn to her work by the touching quotes and unique pieces.

Emilie says, "I love how so many of her quotes are exactly what I want to say, it is like she is reading my mind!  Her work speaks to me and her handwritten quotes add a personal touch to each piece."

Emilie thought that Sandra Magsamen would be a perfect person to make a custom art piece for Girl Power 2 Cure as she believes in making every day count. 

She says, "Like all parents of a daughter with Rett Syndrome, we try to make the most out of each day for our daughters in helping them and others who are around them. All of our girls living with Rett Syndrome are a gift and they truly give us so much to celebrate in their own way.  They have taught us to believe and with this Sandra has written a beautiful quote to inspire us all.

"My hope for this project is that it will grow just like our Garden of Hope.  The cards are simple with our flower incorporated into them with a beautiful quote.  My hope is that people will not only believe that by purchasing these cards they are making a difference by contributing to research; but, that they learn to believe in girls with Rett Syndrome, like my daughter Anna Cate."

The note cards are approx. 4"x6" and come in a set of 12 with envelopes (4 of each design) and are available in our GP2C Store.  Purchase for just about any occasion -- Teacher Appreciation Week, End-of-the-Year Teacher Gifts, Therapist Gifts, Mother's Day, Graduation, Birthday, Thank You, Holiday, OR Just Because! Proceeds will go to Rett Syndrome research.

Sandra adds, "I hope that these cards reach millions of hearts and the proceeds help to bring comfort, healing and a much prayed for cure!"

Thank you for your inspiration Sandra!

New Faces at GP2C

Things are really blooming around here! We are so excited to introduce some new faces at GP2C to you!

Cynthia, our new Program Coordinator, brings over 15 years of experience in marketing, community building, and fundraising for the non-profit and healthcare sectors.  Her diverse background includes working with various national organizations such as the YMCA, United Way, AmeriCorps and the Alzheimer’s Association.  She is extremely excited to join Girl Power 2 Cure and bring her passion for helping others, as well as her unwavering spirit, to raising awareness for Rett Syndrome.

She holds a Bachelor of Arts degree from Rutgers University with a double major in Psychology and Sociology.  Cynthia has a proven commitment to serving others and has been praised for her strong leadership skills, caring demeanor, and community involvement. Cynthia and her husband, Carlo, reside in St. Augustine, Florida with their three children- Carlo (5), Ava (3) and Aidan (1).

Tiffany, proud mother of two, will be taking charge of Team GP2C for the 2013 Disney Princess Half Marathon. She is a journalist and also runs a website called Mamamelia.com which caters to moms and families in the Amelia Island, FL area.

Taylor, our summer intern, is an English Major at Davidson College entering her Senior Year. She is a volunteer mentor with children in the Davidson community with autism and other special needs. She was her high school class valedictorian and also served as the President of Monroe County (GA) Youth Leadership organization.

Janelle, a graphic designer, is the Art Director and Owner of Kismet By Design. She is an avid volunteer and also the co-founder of Mind Over Matter, (M.O.M.) Inc., a nonprofit.

Our Hearts Are One

Together we cry...

Together we embrace...

Together we light up the slightest smile on her face.

Together we will do everything under the sun.

Together in Rett Syndrome, our hearts are one.

It has become a little tradition here at GP2C to send the following words of encouragement written by Susan Squellate Florence to all the mothers of Rett Girls on Mother's Day. These women are the rocks of their families, the strength for their daughters and the collective spirit of the Rett Syndrome community.

Be All That You Are
by Susan Squellate Florence

Be all that you are.
The sun will find you...
give you her warmth...
and bless you with her golden touch
as you awaken.

The wind will call you as you gently bend
and become open to the world
that surrounds you.

The soil will ground you.
The water will nourish you.
You have been planted here.
The world is yours to enjoy...
to expand...
to go wherever you want.

Life is the gift you have been given.
Love is the blessing you can feel.

It is all around...
in the flowers...
in the trees...
in the meadows...
on the mountain tops.

Give yourself a chance.
Give yourself some time.
to know who you are
to become all that you already are.

Accept the gifts of the new day.
be part of every person who says hello.

We are all just hearts alone and together beating
to the music inside.
Fulfilling our ambitions,
finding our places
in the wonder of the universe.

More than to hope in yourself,
may you believe in yourself.

Take your own hand on your own journey.
In the quiet you will hear the voice of wisdom.
In the stillness you will realize your deepest dreams.
And in your heart you will know how deeply you are loved.

Happy Mother’s Day!

100!

I want to tell you about an amazing milestone! We recently added our 100th Rett Girl to our website! Who is this special girl? Her name is Oaklynn.



And before I could take a breath and let it sink in, we got #101, 102, 103, and 104!


I remember when we had just 6 girls listed.

I am so excited about the strength of this community of girls and their families helping to spread awareness about Rett Syndrome through their personal stories.

We used to manage these pages manually -- editing text and updating photos for everyone. Now, we have user-accessible accounts so the families can keep their pages up to date at any time.

While 100+ is AMAZING - I am humbled to think that for each ONE of them, there are another 5,000 suffering out there.

I want to find each and every girl -- and reach out to their family. I lose sleep at night thinking about the girls who are still living without the proper diagnosis ... and the ones whose doctors/caregivers are not linked into the Rett community.

How will they know when we have treatments?

Awareness is about building strength in the Rett community: for support, for funding and for awareness... a key part of which has to be to find all of these girls so we can help them when the times comes -- and keep them strong while they wait.

Thank you to all of the families who have engaged with GP2C and lend us your strength on a daily basis!

Ingrid Harding
Founder and Executive Director
Girl Power 2 Cure

The Optimist Creed

I just got home from speaking to an amazing service organization - The Optimist Club. Like their name suggests, the group was chock full of positive energy. After speaking, they presented me with a certificate and a coffee mug with their creed printed on it.

I think this will be my new creed. I wanted to share with you, too! These principles are at the core of Girl Power 2 Cure and everyone who works with us. We are so thankful to all of the people we have met on this journey. You all add to our collective inspiration to look Rett Syndrome in the eye and still be optimistic.

THE OPTIMIST CREED (visit their website to learn more)

• To be so strong that nothing can disturb your peace of mind.
• To talk health, happiness and prosperity to every person you meet.
• To make all your friends feel that there is something in them.
• To look at the sunny side of everything and make your optimism come true.
• To think only of the best, to work only for the best, and to expect only the best.
• To be just as enthusiastic about the success of others as you are about your own.
• To forget the mistakes of the past and press on to the greater achievements of the future.
• To wear a cheerful countenance at all times and give every living creature you meet a smile.
• To give so much time to the improvement of yourself that you have no time to criticize others.
• To be too large for worry, too noble for anger, too strong for fear, and too happy to permit the presence of trouble.

A Note to the Monster

Now here is some girl power in this photo. You have heard us speak about the Daltons many times. They are really such an amazing family. Rachel (on the right) is 14. She is using the power of words in her family's fight against Rett Syndrome. Her younger cousin Emma (in her arms) has Rett Syndrome.

Rachel has been making and selling bracelets to raise money for research. I came across her "Note to the Monster" on her blog yesterday. The power of her words is so strong.

Rachel, thank you.

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

A Note to the Monster

To the monster- the mayhem- that's hit our family like a tornado hits a little Kansas town.

to the evil-the horrible- that thinks it can get our spirits down. well FYI? it doesn't work.
to you rett syndrome, yes you.

while you bring us wheelchairs and hospitals and worries galore you also bring us a strength we never thought possible. when you bring is seizures and sleepless nights and tears beyond the norm you also bring us a bond so tight nothing can come between it.

to you rett syndrome.

the robber who takes the muscles of the little girl. you think you'll break us this time with the chair and the wheels but you haven't. try again.

the thief who stole her words. you think were in your trap with the nonverbal pain and unexplained sadness but you don't. well just keep fighting.

to the selfish one who gives her seizures and pain just to watch her struggle to eat, drink, breathe. live. I dare you to sit there and watch as we fight for her. because you're just adding fuel to the fire my dear rett syndrome. and that's a bad idea.

we are a family that fights together.
a love that never ends.
a strength that doesn't give up.
a hope that doesn't stop. not ever.

Not even when our dreams are shattered like glass.
Or our when our worst fears are coming true.

so I dare you to sit there and watch while we work to rid of you. to end the struggles and suffering. not only for our little girl but for the thousands of others out there. ao that next time she can look in the face of another child and say 'i got through the bad and I know you will too'.

so that some day shell have a chance to run though sprinklers or yell at her mom. so that shell have a chance one day to let her guard down. to stop being strong.

you just wait rett syndrome because a day will come when those scientists look at you with a sparkle in their eye and say "take THAT you horrible disease!". someday someone will receive a diagnosis of rett syndrome for their daughter and breathe a sigh if relief because you will be the disease with a cure.
and as for those girls you've caused pain and suffering? they'll become advocates for the others in their situation. they'll hold seminars and tell everyone of the horrors you caused them to be trapped in their bodies. you'll become extinct and never cause another innocent girl any pain. Ever.

I guarantee that someday you rett syndrome wont even have a grip on those scissors youve been using to cut chromosomes.

so take that rett syndrome because after everything weve been though were still glowing with hope like the sun.

you won't take her. break her.

you won't shake us or shame us because the tables turned rett syndrome.

we. have you beat.

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

Be sure to check out Rachel's blog!