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.

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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.

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Be sure to check out Rachel's blog!

Ava's Match

We have such a wonderful story to share!

In the words of one of our new Board Members, Pam Maxwell:

Shortly after joining the Girl Power 2 Cure Board of Directors, I was scheduled to attend our first evening board meeting in August. This was being done via conference call and, as a working Mom, my kids are very used to me taking calls and working at home. But having a “work” call at night is unusual so they were asking me why I was working at night.

As we drove home that evening from dinner, we had a conversation about my joining this board, what Rett Syndrome is and what the non-profit organization and those who join the board do to help. We got home just before 8:30 pm and I went right into the office, instructing my 6-year-old daughter, Ava, and 8-year-old son, Alex to go play and give Mommy some quiet time.

I dialed into the conference call and was waiting for the others to join, when...

Ava came into the office with her piggybank and proceeded to dump its entire contents onto the floor, asking me for a plastic bag into which she could put all the change.

She said, “Mama, I want you to give this to those people who help the girls.”

I explained she didn’t have to give all her money but she said, “It’s not fair that they can’t talk and play.” I gave her a big hug and said of course, that I would take it with me when I went to Washington DC for the big gala party.

At the board meeting in DC, we dumped the money onto the table and counted it out. Our board consultant was so excited about Ava’s giving nature that she wrote a little note to Ava thanking her for her generosity and said she would match Ava’s contribution. Then I said I would also match it as did Laura Labatte, GP2C board treasurer. Laura counted out the money – $6.65 all in change.

With all the “matching” donations (most were for more) we raised $143.65 for Girl Power 2 Cure in a matter of minutes. All that from a simple act of kindness by a 6-year old who just wanted to help.

Will you match Ava's $6.65?

October is Rett Syndrome Awareness Month

What an amazing month of awareness! People are painting their toenails purple, putting purple lightbulbs in their front porch lights, AND painting the windows on their vans -- just to name a few!

There are TV spots, Radio ads, and newspaper articles. Rett Families are shouting from the rooftops.

I want to share one of the radio spots with you. It is the voice of Dana Marie, a Canadian recording artist. She wrote a song, I'll Fly, for a little girl, Anna, that she knows with Rett Syndrome. A brief story about the song recently aired on 94.2 Faith FM.



Love what you hear and want to get the song? We have it available for download and half the proceeds benefit Girl Power 2 Cure.

Friday Book Nook #2

OK - so it isn't Friday yet! But you will need time to get ready for this week's book recommendation. It's one of those can't-put-it-down ones that will leave you feeling ready for battle for anything!

The Cure:
How a Father Raised $100 Million--and Bucked the Medical Establishment--in a Quest to Save His Children.

This book was made into a movie starring Harrison Ford called "Extraordinary Measures."

The author of this book is an extraordinary man and father. If we could all just fight a fraction of the battle he waged, we would really get somewhere.

John Crowley is a role model for me. I strive to take on my nook of the world with the same relentless spirit as he does for his children. We all have it in us to push the boundaries and make change.

I had the pleasure of spending some time with John discussing his journey and giving him a glimpse into the Rett Syndrome world. He continues to fight for ALL rare disorders and I hope our paths will cross again!