Girl Power 2 Cure

The Optimist Creed

2011-12-21T13:54:00.002-05:00

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

2011-11-30T09:27:00.005-05:00

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

2011-10-20T13:57:00.003-04:00

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

2011-10-11T21:03:00.005-04:00

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

2011-08-02T23:29:00.007-04:00

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!

Friday Book Nook

2011-07-08T16:10:00.006-04:00

Keeping Katherine (a story of a Rett family)

In Keeping Katherine: A Mother's Journey to Acceptance Susan Zimmermann tells the story of her life with her daughter Katherine, who has Rett syndrome, a devastating neurological disorder. Writing with honesty and candor, Zimmermann chronicles her personal journey to accept the changed dynamic of her family; the strain of caring for a special needs child and the pressure it placed on her marriage, career, and relationship with her parents; the dilemma of whether Kat would be better cared for in a group home; and most important, the altered reality of her daughter’s future.

A story of personal transformation that reminds us that it isn’t what happens to us that shapes our humanity, but how we react, Keeping Katherine shows the unconditional love that exists in families and the gifts the profoundly disabled can offer to those who try to understand them.

Have you read this book? Share your thoughts with us!

Have a book to recommend? Send us your reviews!

>>CLICK HERE TO PURCHASE<<

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Reviews:

I found this book immediately following our diagnosis. To say it was a difficult read at that time would be an understatement. Every time I read, I ended up in tears. Wondering if this was our future. I stopped reading it at one point because I decided not knowing was better. But eventually I picked it back up because I had to know what happened. I’m so glad I did. After reading it, we passed it on to several of our close family members. I was a little afraid, knowing how I had felt about it, but I think it gave everyone a really honest look at what we would be facing without me having to say it. -- Kristy Brooks

Effective Communications Month - We Love You!

2011-06-23T16:51:00.005-04:00

Before June (Effective Communication Month) is over, I want to squeeze in a post on the topic. Most people think the top priority for a girl with multiple handicaps would be to walk, but communication is what really tops the list. Effective communication that is.... Girls with Rett Syndrome are very good at communicating the basics: "something's wrong!" "something's great!" and "this is really really boring."

But how do people around them understand exactly what is wrong, great, or boring? How do Rett Girls go further to express a sense of humor, a dream, an idea, an observation?

Technology will be the key. And luckily that is moving at a fast pace. But the educational teams assigned to work with these girls are slow to keep up in many instances.

Nineteen years ago, the NJC (National Joint Committee for the Communication Needs of Persons with Severe Disabilities) published a Communications Bill of Rights. 1992 is a long time ago - we still need a lot of work in this area.

To share the words of our very own Kelly Butler whose daughter Brooklyn has Rett Syndrome:

I recently was made aware that there is actually a Communication Bill of Rights. As a mother of a disabled (non-verbal) daughter you would think I would have know about something like this. (Better late than never I guess!)

Anyway, as I began reading through the list I said to myself, "Everyone wants these things, I know I certainly do!" But then it hit me - and hit me HARD. Brooklyn doesn't always have these things....Rett Syndrome took them away from her. It is up to me to make sure she gets them back and keeps them, always.

Today as you make your choice for what you will have for lunch, take some Tylenol for that headache, go to the bathroom, talk to your friends, or even decide its time for bed - think about Brooklyn - and the millions of kids and adults that are non verbal and can't always make these choices for themselves and then be thankful. Very, Very thankful and maybe, just maybe - help fight for those who don't have these things - fight for them.

Communication Bill of Rights: All people with a disability of any extent or severity have a basic right to affect, through communication, the conditions of their existence. All people have the following specific communication rights in their daily interactions. These rights are summarized from the Communication Bill of Rights put forth in 1992 by the National Joint Committee for the Communication Needs of Persons with Severe Disabilities.

Each person has the right to:
■request desired objects, actions, events and people
■refuse undesired objects, actions, or events
■express personal preferences and feelings
■be offered choices and alternatives
■reject offered choices
■request and receive another person's attention and interaction
■ask for and receive information about changes in routine and environment
■receive intervention to improve communication skills
■receive a response to any communication, whether or not the responder can fulfill the request
■have access to AAC (augmentative and alternative communication) and other AT (assistive technology) services and devices at all times
■have AAC and other AT devices that function properly at all times
■be in environments that promote one's communication as a full partner with other people, including peers
■be spoken to with respect and courtesy
■be spoken to directly and not be spoken for or talked about in the third person while present
■have clear, meaningful and culturally and linguistically appropriate communications

From the National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. (1992). Guidelines for meeting the communication needs of persons with severe disabilities. Asha, 34(Suppl. 7), 2–3

Click here to download a poster to display at schools and therapy centers.

My community has a soul.. That is why we call it home.

2011-06-08T16:07:00.003-04:00

Welcome to our guest blogger today: Jen Dalton from Saranac Lake, NY - mom to Emma and member of the GP2C Mothers' Advisory Board.

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What is a community? According to the dictionary a community is “a social group of any size whose members reside in a specific locality, share government, and often have a common cultural and historical heritage.”

My eighth grade students often asked me why in the world I would come back to live in Saranac Lake. I tell them I too couldn’t wait to leave, to go where the action was, to live an exciting life in a big city. That was 20 years ago. 16 years ago I found my way home. Home to the hour drive to the mall, the one way streets, the town where I grew up.

You don’t realize when you are young just how amazing your home town can be. How extraordinary it is to go to the grocery store or post office and hear “Hi Jen!” Or “Hi Mrs. Dalton” ? People know you and your family. And then something devastating happens to someone and you watch that community spring into action. I’ve seen it happen time and time again – never imagining it would happen to me, but it did.

In September 2008, my daughter Emma was diagnosed with Rett Syndrome. We had heard the words before, but on that day it became a bittersweet word that would change our lives forever. Sweet because we finally had a name for the monster that was not allowing Emma to gain skills. Bitter for all of the other reasons – the implications that she was facing a long, uphill battle, and that the life we had dreamt about for her would be very different than we had thought.

Very shortly after, I became involved with Girl Power 2 Cure. At first it was a way to connect with people that were going through Rett Syndrome. They “got it” when no one else even knew what Rett Syndrome was. As part of the healing process - knowing that Rett Syndrome symptoms had been cured in Dr. Adrian Bird’s lab in Scotland - I threw myself into planning a benefit event. Being a music teacher and coming from a very arts centered community , I knew it had to be be musically related and thus, Rockin’ For Rett was born.

Our first Rockin’ for Rett event was held in October 2009. We had wonderful musicians from the community who donated their time to perform. Our community donated many amazing items for the slient auction. It was a great day and we raised awareness of a horrible condition people had never heard of. Very shortly after, people from the community began to ask me if we were going to do another benefit. We knew we needed to “tweak” the format and make it a more family friendly event and that is when our community sprang into action.

One day I had a thought as I went to visit my friend Jen Tucker. Her husband’s family owns a huge potato farm that has been operating since the 1860’s. Every year they plant the Great Adirondack Corn Maze. All of a sudden it made sense! Rockin’ for Rett 2.0 could be held at the farm. People could enjoy the Corn Maze. It would be great! The owners were very excited about the prospect of the event being held at the farm. Each year they design a different corn maze and because of their interest in Emma and in helping to find a cure for Rett Syndrome, they added the Girl Power 2 Cure Flower, Em’s name and Rett into the Maze. I think it was the largest Girl Power Flower to date!

It felt like our entire community helped with the event. From local businesses donating items for auction, to students volunteering at the event from the local honor societies, to young volunteers running the bake sale - we felt supported by everyone. Together that day we were able to raise $25,000! All from a town of less than 5,000 people. It was truly remarkable.

For us , community means family. Our families are the most amazing out there. They have been willing to get on this crazy ride with us and support us in any way they can. Not just in the planning of events. It is the every day life support that we will be forever grateful for. I am so thankful we have that support and love.

Rett Syndrome hasn’t been cured yet. The excitement of Girl Power 2 Cure, however has grown ten fold in our community. In April, my 9 year old daughter Sarah did a Pennies for Rett Drive at our school. Kids were arriving with coffee cans full of pennies. Sarah is currently at $420 and counting as pennies continue to arrive daily! Also in April, my nieces Rachel and Kelly , along with their friend Nathalie organized a Spaghetti Dinner in honor or Emma for Girl Power 2 cure. Along with their friends they secured donations from very generous businesses and people in our community and were able to raise over $2,000!

I have come to realize that community is so much more than the people who live and work in your town. They are the people who you call family. They are the people who teach your children. When someone is in need no matter how big or small, they are the people who arrive at your door, or call on the phone saying “What can we do to help?” In the words of Pope John II “...A community needs a soul if it is to become a true home for human beings. You, the people must give it this soul.”. My community has a soul.. That is why we call it home.

"This Stefanie Matters" TO US!

2011-05-30T21:26:00.003-04:00

A fellow Rett mom shares her story "Why Girl Power 2 Cure, you ask?" on her blog: THIS STEFANIE MATTERS.

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Why did we join Girl Power 2 Cure and why do we love them so much?
Best to start from the beginning.

When we were first diagnosed, we read about the old-school literature of Stages I through IV of Rett Syndrome, which in a not-so-scientific nutshell discusses our daughters normal development, regression, stagnation of skills, and rapidly deteriorating stage until the unspoken happens.

Where was the hope in that? We first brought Anna home from the geneticist and were under the impression that Rett was a death sentence.

Hope and joy were hard to come by. Full disclosure: on Anna's hard days they still can be, but nothing is as black as those darkest days. There are days now that Spring has arrived that I am at the park with the kids and I see a healthy girl Anna's age running, talking, playing... And I think, "Only 1 gene separates my daughter from you." Sometimes I go back to throwing stones at them but other times I can get through it by telling myself their mothers are going to be jealous of me when their girls are 16 and off riding in cars with boys on Friday nights and Anna and me are having a movie night cuddled up on the couch. Ah yes, bargaining! Works every time.

When we found GP2C, the "girl power" confused me at first. I was never a "girl power" kind of gal. But as I perused through their website and stumbled upon "Meet our girls!" I found myself in a symbolic garden of hope with beautiful photos of families and their girls, their moms, their stories, how old they were when they were diagnosed, what has helped them, what hasn't, where they were from.... Not only did I become a believer in "girl power" but here I was looking at these flowers - lovely gals - planted all over the country! How could we not be a part of this? I have become a girl power kind of gal who now has a flower power GP2C bumper sticker on the back of my car. The cynical me is gagging right now. But she doesn't much exist anymore...

READ MORE

"Mom Message" from Kristy Brooks

2011-05-09T10:56:00.006-04:00

Throughout May, we want you to meet the incredible moms serving on our Mothers Advisory Board. Today, we welcome Kristy Brooks, GP2C Mothers Advisory Board Member, as a guest blogger. Be sure to watch the video, Juliana's Story, linked below!

And So We Will Continue…
We received the news in the mail – a diagnosis of Rett Syndrome for our daughter Juliana. I never thought for a second that it wouldn’t be positive or I wouldn’t have opened the letter alone. I was six months pregnant with our second child at the time and my knees literally buckled from under me when I read the words.

I sat on the kitchen floor, crying all by myself. Why did I open it?? It only meant that I would now be the bearer of bad news. I should have waited, but I never thought it would be true. The only way to describe how I felt that day is absolute nightmare. I just kept repeating in my head – ‘THIS CAN’T BE TRUE . . . THIS CAN’T BE TRUE. Please let me wake up from this nightmare.'

To say that the days and weeks that followed were hard would be a huge understatement. Aside from the initial horror of the diagnosis, we now had to figure out how to tell everyone. No one knew what Rett Syndrome was, so having to explain every last painful detail over and over again was torture. After the pain and the hurt came the anger, the “Why me?” the anger at God. Not a good place to be. So we started looking for answers and trying to accept what this would mean for our lives - all while trying to maintain a job and get ready for the birth of our second daughter.

We survived the next couple of months but quickly realized we couldn’t live like this. We couldn’t just take this sitting down. There had to be something we could do.

Enter Girl Power 2 Cure.

Girl Power gave us hope again. It made us realize that this didn’t have to be a death sentence. You can’t understand the comfort in knowing that you are not alone. Our family was wonderful, but no one REALLY understands what you are going through like another Rett Parent. Girl Power gives us hope in all the research that is being done and all the potential it holds.

We quickly assembled a team, affectionately called 'Juliana’s Dream Team.' It is a team of everyone who loves her. And the magical thing is that the Dream Team just keeps growing. Over the last 2 ½ years, we have held 2 golf tournaments, 2 spaghetti dinners, one wine tasting and countless other garage sales and donation jars. And we aren’t stopping there.

We plan to keep going until Juliana gets her cure.

To see all the progress Juliana has made, against so many odds, gives us all so much motivation to find a cure.

And the motivation for all of this? An amazing little girl whose smile literally recharges you. Everyone who meets Juliana is instantly drawn to her. She has very special qualities and although she can’t talk with words, she grabs hold of your heart and you feel this instant connection to her. I actually feel so lucky and blessed to have this amazing child. She inspires so many people - I can’t believe that she’s mine.

If I could change things and take Rett away I would do it in a heartbeat, but I’ve stopped asking “Why Me?” in a negative way and started asking “Why me?” in a special way. What did God see in me to give me such a special angel? We still have our rough days but thankfully the good far outweigh the bad.

So we will continue.

Juliana will continue to teach lessons in love, compassion and patience. And we will continue to care for her and love her in the best way we can all while we continue the mission of finding her a cure. Keep an eye on my girl. She has and will continue to do amazing things in her lifetime!

2011-03-08T10:45:00.002-05:00

Today is the 100th Anniversary of International Women's Day. It all started in Europe in 1911 when millions rallied to celebrate. It is hard to imagine getting together millions of people in 1911 without Facebook, Blogs and the Internet.

This leads me to two thoughts. And, yes, they will certainly be tied to Rett Syndrome.

First: I was reading a medical blog the other day which had one sentence that really struck me. It was not anything new, it was just the way it was stated... and perhaps there was something about my state of mind when I read it:

"The only known risk factor for getting Rett Syndrome is being female." Wow. That is a tough one to swallow. Think about how random this is.

Every now and then I calculate how many girls have been born with Rett Syndrome since our daughter Sarah was born. As of today (going by 18 born each day) we are at 66,366. 66,366 girls Sarah's age who cannot grow up to be the women they deserve to be. And that figure doesn't even come close to the total which reaches close to half a million.

1,206 born just in 2011 so far.

Second: We need to find all of these girls. Women around the world need to know about them. We can stop this. For all the girls and women reading this today, do something to push us closer to a cure. Every little bit counts.

If one million people can gather in 1911 without mass communication, certainly we can keep sounding the alarm about Rett Syndrome.

Make today your tipping point. If you have not been involved with raising awareness and funds for research, start today. We'd love to have you by our side.

We have an entire section on our website dedicated to HOW TO HELP -- click there now! We need YOUR POWER to cure Rett Syndrome.

http://www.girlpower2cure.org/how-to-help.aspx

GP2C Youth Volunteer Recognized by YSA

2011-02-05T21:05:00.004-05:00

Congratulations to GP2C Youth Volunteer Rachel Dalton! She has been recognized as an "Everyday Young Hero" by YSA for her commitment to raising community awareness about Rett Syndrome and to finding a cure!

Rachel has been an outstanding volunteer for GP2C. Last Fall, she organized friends and family to make baked goods for a bake sale and raised over $800!

Read the full press release from YSA here

RETT WE CAN!

2011-01-05T16:45:00.006-05:00

She can't do this. She can't do that... It can be a real downer for Rett Girls every day. But... only if we let it be that way.

To kick off the New Year with an empowering attitude, Girl Power 2 Cure is launching a new YouTube channel called RETT WE CAN!

Here is why we created this channel (inspired my Rett mom Terri Vejrosta!)

* to share the "Rett" experience by showing the things Rett Girls CAN DO
* to put an empowering, positive, human face to Rett Girls
* to have a place to send therapists, family members, volunteers, and donors to see Rett Girls staying strong
* to have all the great YouTube videos ORGANIZED by category*
* to get inspired
* to explore different things to work towards with Rett Girls
* to educate others about Rett Syndrome

If you have a video you would like us to include, please send us the link! (post a link on Rett Girl's facebook page or email us at rettwecan@girlpowe2cure.org)

Please know that there will be a wide spectrum of girls featured on the site. Not all girls will be able to everything here. For instance, I know my Sarah probably will never water ski like Jade, but others just might!

The point is to always reach FORWARD. Always explore and challenge and keep Rett Girls active. All of us have a role to help bring these girls to their full potential. Each girl's potential will be different, but we want to make sure everyone stays inspired to believe...and have the tools to inspire everyone who lives or works with a Rett Girl.

Check it out now at www.youtube.com/rettwecan!

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* Our current categories are Walking, Hand Function, Eye Gaze, Communication and Expression, Sports and Adventure, Therapies.

NOTE: When you visit the site and see the category listings, click on one...then you will see all the videos under that category. Remember to send us suggestions and even category recommendations! We want you all to be a part of making RETT WE CAN a great resource!

2011 is a NEW YEAR! Best wishes and strength to all!
- Ingrid

Seeing Life through the "Gratitude Glass"

2010-11-14T16:51:00.006-05:00

I have really been enjoying Facebook this month. A lot of people are posting something they are thankful for each November day. I guess you could say that I am thankful for THEM!

Here is an informative interview with Christine Carter from the Greater Good Science Center at UC Berkeley, that highlights the extraordinary benefits of teaching children the invaluable skill of gratitude. And I bet there are some tips that might just help you look through the lens of the "Gratitude Glass" too!

Walks, Parades and Churches...oh my!

2010-10-13T14:02:00.012-04:00

Kudos to all the families who are making this October's Rett Syndrome Awareness Month ROCK!

We started with Golf for a Cure for Kylie in Michigan. Then up to NY for Rockin' for Rett for Emma! Last week, Angola, Indiana rocked for Brooklyn.

Coming up.... Toast for a Cure in Dallas for Juliana and Win for Brynn 5K in Columbus, OH!

Aside from our events, there are three other great activities I just have to share!

ONE: Last week on October 8th, St. Joseph's School in Malone, NY held a "Rock the Walk" in honor of Emma Dalton. It was a simple concept that really had an impact. About 300 students, grades 3-5, all pitched in to create a Garden of Hope at school (raising $300!) and walked around their community in honor of Emma.

TWO: Then on October 9th, a Girl Power 2 Cure parade float came to town in Topton, PA in honor of Emma Shubert! The Shubert Family worked with 38 Brandywine Heights Girl Scouts, 14 moms, 6 dads and 2 little brothers to build an amazing awareness float that had photos of 9 Rett girls on it. They designed, built, painted... they put together 2,500 lollipop/awareness cards to hand out to the crowd...and even came up with a great chant to sing to the 10,000 plus spectators. Way to go Shubert Family and Girl Scouts!

THREE: Well, then the Shubert's lollipops got Amanda Reid's mom, Ronna, thinking... and she is now putting together lollipop cards to pass out at their church's "Pierce of Darkeness" (a Trunk-or-Treat event) on October 30th. This is an event planned for the kids to be able to trick-or-treat in the church parking lot in a safe environment. Oh, and they also plan to grow a Garden of Hope on their van! Looking forward to pictures!

One Big Goose Bump

2010-10-05T20:37:00.011-04:00

Last Friday I started my adventure up north from Florida to Saranac Lake, NY for Rockin' for Rett 2.0 organized by the Daltons in honor of their beautiful daughter, Emma.

I say "One Big Goose Bump" because all day long I kept experiencing one amazing thing after another: meeting new Rett families, hearing supporting words, watching the droves of people arrive to share the day, taking in the view of the vast expanse of corn fields, seeing the Girl Power flower pop up all over the event on faces, shirts, a puppy!, a huge rock, cookies, sun catchers.....

The video below will give you a peak into this amazing day!

Before I get to the video, I want to showcase some amazing GIRL POWER at the event!

First, let me introduce you to Rachel and Mariah. Mariah moved away to another state and came back to visit and support the event. She surprised me with a check for $500 that she raised holding a bake sale back home in Washington State! Rachel, Emma's cousin, put together the bake sale at the event itself. As you will see in the video, she had the back of the truck FILLED with baked goods - literally hundreds of cookies, cakes, and other goodies that she and her friends made. Her bake sale raised over $800!

Another three girls came to volunteer from a local high school. We put them to work selling paper flowers for our Garden of Hope for $1/each. They sold about 30 and then said they had about 40 minutes left in their time. We told them to go and enjoy the music. BUT more than one hour later, they were still walking around selling flowers! They were up to 118! You can see the amazing Garden of Hope they helped grow at the event in this photo!

This is what Girl Power 2 Cure is all about. Bringing together families and their community in hope and joy. Inspiring young girls to get involved to help fellow girls who are suffering. Raising awareness for Rett Syndrome and funds to support our vision to make Rett Syndrome the first curable neurological disorder. Thank you to the entire Dalton and Cheney crew for putting together an amazing event!

ENJOY THE VIDEO!

- Ingrid Harding

Just the beginning!

2010-09-15T11:09:00.003-04:00

OK -- I know, pretty cheesy to post a pic of a check, right?! Well, this is the biggest check Girl Power 2 Cure has ever gotten and I have a feeling this is just the beginning! Since its start in 2006, we have raised over $250,000 from over 2,600 donors!

This check is from the Chase/Facebook vote where we placed 17th out of tens of thousands of charities in June. This $20,000 will help us get to the next level. We have our minds set on great new heights!

Thank you to everyone who has supported us, voted for us, encouraged us and keeps our dream of a cure alive through the hope and joy and beauty of the precious girls and their families struggling with Rett Syndrome.

A special thanks to our team members:
Kelly Butler, Family Support and Event Coordinator
Terri Vejrosta, RettGirl.org Coordinator
Lisa Commette, Director, Garden of Hope and Community Outreach
Kathryn Corena, Communications and Development

Our Mothers' Advisory Board:
Erin Bleske
Kristy Brooks
Jen Dalton
Bridget MacDonald

Our Board of Directors:
Roger Brooks
Kevin Coloton
Laura Labbate

I am so honored to work with such amazing people who are inspired by this work. Your time and dedication is incredible. We welcome everyone to join our organization's efforts.

Get your Girl Power On!

Ingrid

The Power of THE PURPLE CARD

2010-09-10T14:21:00.006-04:00

What do you need for Rett Syndrome Awareness Month in October? THE PURPLE CARD of course!

Read all about our customized cards and order yours today! You will love the response. Promise.

CLICK HERE!

Back-to-School

2010-08-30T10:50:00.007-04:00

School Time! Here's an easy 1, 2, 3 to help get you started!

We know how hard it is to get going each year - new teachers and therapists, new routines, new children asking new questions. It can be overwhelming, frustrating and disappointing. We have been.... we ARE there right now, right there with you. I hope these ideas/tools will help you and your daughter move through these next few weeks a little smoother.

1. On Girl Power 2 Cure's Back-to-School page we have:

a sample letter to send home to parents

a sample school guide to put together for your daughter's team

two simple games to play with her fellow classmates

2. Visit RettGirl.org! There is a "School Stuff" Tab plus dozens of ideas/tips/suggestions/recommendations from other Rett families.
Send in your ideas! We would love to share them with our families!

3. I would also like to share with you this 10-minute audio presentation of a few of our family's "Rett" stories. I call it my RESOLVE stories.

Have something you would like to share?

Email us, call us! Also, be sure to join our Facebook pages for Girl Power 2 Cure and Rett Girl.

GOOD LUCK! We hope you have a wonderful year! We want to be there for you every step of the way.

Ingrid

We need more votes!

2010-06-27T17:01:00.002-04:00

We are battling our way to the top of the Facebook/Chase Community Giving Campaign!

With $250,000 on the line, we need everyone's votes! If you add up all our past donors, volunteers and Facebook fans, we have more than enough to win this!

It is just a matter of getting it done!

If you have not voted yet, VOTE TODAY! It is just a one-time vote.

All the info is at http://www.gp2c.org.

Thank you!

Ingrid

CHASE Away Rett Syndrome

2010-06-14T21:27:00.003-04:00

JUNE 15th - JULY 12th

www.girlpower2cure.org/chase

TOP 200 Vote-Getters Win!

We are so excited to let you know about an online vote Girl Power 2 Cure will be in starting in just a few hours!! Many of you are involved with voting and following the IRSF Pepsi vote which ends on June 30th. It is all so exciting! Especially the awareness for Rett Syndrome! Imagine all of the people reading those listed on the first page of the results.

Well, we have been planning for a similar vote for the past few weeks, only it is through Chase Community Giving. The benefits to this vote are this:

1. Voting is through Facebook

2. You are only allowed to vote once (well you can earn another vote, but I won't get into that here), so no need to try to get people to vote daily.

3. The TOP 200 vote-getters win $$$! First place = $250K; 2nd-5th place = $100k/each; and, 6th-200th place = $20K/each!

We would love to have your support in helping us win this vote which runs JUNE 15th - JULY 12th.

We have created a webpage at www.girlpower2cure.org/chase where you can send people to easily find the link to vote, as well as print out vote slips to hand out around town, etc.

Since this is just a "one vote per profile" thing, I hope you will find it easy to promote.

We are working hard to make this happen! Please visit www.girlpower2cure.org/chase to learn more and see what our plans for any money won would be!!! I think you will find it exciting!

THANK YOU FOR YOUR SUPPORT!

Juliana's Story

2010-06-01T13:48:00.003-04:00

The Brooks Family in Texas is one of those amazing families who have incredible support from friends and family. Their daughter Juliana was diagnosed with Rett Syndrome just one year ago. They have already held about 10 fundraisers with the help of their "Dream Team!" Now Roger and Kristy have produced this beautiful video about their story and their work with Girl Power 2 Cure. Watch and be inspired!

CLICK HERE TO WATCH ON YOU TUBE

Springtime for Rett!

2010-04-21T21:55:00.002-04:00

Flowers are blooming all across the country for our Rett Girls! Check out our Garden of Hope project! In Tennessee, flowers are blooming at 30 different Fifth Third bank branches....they are blooming in Indiana, California, Michigan, Maryland, Arizona, Texas, Ohio, New Jersey. Oklahoma, Kentucky... and have even crossed the border in Canada! Join in the "planting!" - it is easy and fun! Tip to get lots of stores to host a garden in one "stop": attend your local chamber of commerce / business association meeting and ask that they all participate. They can pick a week or a month that is convenient for them. We mail you the flowers and provide an online kit. Visit http://www.dressup2cure.org/garden-2010.

MAY 15th DEADLINE FOR OUR PRIZE CAMPAIGN - And remember, for each Rett family who starts a team web page for Girl Power 2 Cure's Spring Campaign (http://www.dressup2cure.org) there are incentive prizes! For each $100 raised for your team, you get an entry into the raffle for these incredible prizes with a total value of $15,000 (Sleep Safe Bed, Family Vacation, Up 'N Go Walker). Check out the site and get started. It just takes a few moments. Proceeds benefit the research program of the Rett Syndrome Research Trust. (Flowers grown for Garden of Hope count towards your goal as well!)

RETT GIRL SPRING FEATURE:

Check out this great product I just listed for Spring at RettGirl.org! It is a special needs "wagon" that attaches to a bicycle -- and doubles as a stroller. It's a WIKE! Check it out!

Have a wonderful weekend! and don't forget to share your ideas with us on RettGirl!

New Board members for 2010!

2010-02-27T13:36:00.005-05:00

Just a quick note to let you know we have a new team of Board Members at Girl Power 2 Cure for 2010! They will be working hard to make our organization bigger and stronger than ever! Roger Brooks and Kevin Coloton are both fathers of little girls with Rett Syndrome. Laura Labbate is a long-time friend who is very passionate about our cause. We will all be meeting together next weekend to get the ball rolling. Send us your good vibes and enthusiasm!

Read more about them at:
http://girlpower2cure.org/board.html

Girl Power on Parents TV!

2010-01-15T21:27:00.005-05:00

I had the amazing opportunity to be interviewed by Anne Ebeling for a story on Girl Power 2 Cure and Rett Syndrome with Parents TV last Fall. They just posted this to their site yesterday and I wanted to share it with you! They filmed our family for three hours! Then somehow managed to turn it all into this wonderful little 4-minute package.

Click here to watch! and then pass it on!

Also, we are signing families up for April's Dress Up Cure! And are also looking for places to plant a "Garden of Hope." We hope you can join us!

Ingrid

Rett Syndrome Awareness Video

2009-11-04T16:02:00.003-05:00

Great new Rett Awareness Video to check out! This was made for RSRT pro bono. Girl Power 2 Cure supports RSRT's research projects with the funds we raise through our cool fundraisers like Rockin for Rett, Dress Up 2 Cure, and Garden of Hope!

Be sure to share the video with everyone! If you want to post on Facebook, use this link: http://blip.tv/file/2756182

Rockin' for Rett

2009-07-14T16:37:00.004-04:00

Check it out! We've just developed materials for a FANTASTIC fund raiser called Rockin' for Rett! Our goal is to have 20 events in October! You can either plan an event, or just ask an existing event to partner with Rett Syndrome in October for Rett Syndrome Awareness Month. (if another month works better, that's ok too!)

visit www.rockinforrett.org!

We will support you every step of the way with posters, t-shirts, web page, online ticketing..... the works!

Email kelly@girlpower2cure.org to get your kit and get ROCKIN!

--Ingrid

Wheelchair on EBAY

2009-07-02T23:35:00.001-04:00

There is a PINK power wheelchair up for auction on EBAY! Great deal -- ends Sunday -
$300 plus $100 shipping:

CLICK HERE!

CommuniCause!

2009-06-16T13:32:00.006-04:00

Ok, folks! Let's show the world what spirit we have to get the word out about Rett Syndrome! I need you all to VOTE and SPREAD THE WORD TO VOTE for Girl Power 2 Cure on Communicause.com! The winning charity will get a $25,000 social media makeover, not to mention lots of great press!

When I first signed up, we were ranked 259. After just one day, we were at 157 this morning and 130 this afternoon! Make that now #46!!!

WE CAN DO THIS!

HERE IS THE LINK! VOTE NOW! THEN PASS IT ON!
http://communicause.com/my-cause/2746/

Thank you!
Ingrid

Help Spread Awareness!

2009-06-01T15:50:00.000-04:00

Are you looking for a great way to spread awareness??
We have just sold out of our car magnets and are about to reorder! To get the ball rolling, we are offering a pack of 20 magnets for $50.00! They are usually $5/each. They make great gifts! Everyone in your family could have one on their car... this is such a great way to spread awareness for Rett Syndrome!
Visit the following link to see what they look like and to place your order!
http://girlpower2cure.org/magnet-order

But hurry, this is a SPECIAL OFFER!!! GOOD THROUGH JUNE 5th ONLY!

Rett Syndrome Conference Tips

2009-05-21T12:01:00.002-04:00

Hello!

I am excited to be meeting many of you for the first time this weekend in Virginia at the IRSF conference! This will be my fourth conference and my favorite part is getting to spend time with other Rett families!

If you are not able to make it, touch base with someone who has, or send me an email. There are usually audio copies of each session available for sale.

Just a few quick tips:
1. Print out slips of paper with your contact info on it to pass out.... you will be amazed at how many times you will be asked to write down your email for people you meet! Include at least your name and email plus your daughter's name and age.

2. When someone gives you THEIR info, jot down some info next to it. Like, "sat with at lunch on Sat" or "the one who has is doing horse therapy" etc... you think you won't foget, but with all the new info coming at you all weekend, you will be overwhelmed when you get home!

3. Pack a sweater!!! Of course now that I say it, it won't be true, but every year people are frrrreeeezing in some of the conference rooms.

Whatever your plans, have a great Memorial Day weekend!

Flowers are blooming!

2009-04-09T00:11:00.006-04:00

Flowers from our "Gardens of Hope" are now blooming in 8 states!

Looking for a simple way to help with fund raising?

Help us "plant" flowers all over! We are looking for stores, restaurants, banks, salons and events interested in cultivating a "Garden of Hope" on their wall to raise awareness for Rett Syndrome.

Just like the March of Dimes, we have paper icons that are signed for a $1 donation. Only we have a flower! Contact gardenofhope@girlpower2cure.org if you will help us plant these flowers and cultivate this Garden of Hope this Spring!

More info plus a starter kit is available at www.girlpower2cure.org/gardenofhope.

People can also make a Garden of Hope from our coloring pages!

Sweetest Thing

2009-03-30T22:18:00.003-04:00

I have to share this story! After loading Sarah into the car after school today, a mom came over and said, "Is this the famous Sarah we are getting dressed up silly for on Wednesday?"

I said, "It sure is!"

So she continues with this story:

"I have a daughter in Kindergarten. At home she has had a little bowl on the front hall table all year. Whenever someone visits, she asks them to donate to her charity and she holds the bowl out. When asked, she does not know what her charity is...

so when the flier came home last week about Dress Up 2 Cure and Team Sarah, she came running in so happy and telling everyone, I know what my charity is now!!! So she will be bringing in all the little coins that have gone into that bowl for Sarah."

That story really moved me. You just never now the impact our girls are having on the people around them. What a special moment. I can't wait for Wednesday!!!!

If you are not part of Dress Up 2 Cure to help us raise funds for Rett Syndrome research, you need to be! www.dressup2cure.org -- chip in the change from your "bowl" in April. And next year, start a team of your own!

Chatterchix

2009-03-13T14:45:00.006-04:00

Well, our Rett girls make not chatter much, but this is a really fun product for girls that I am excited to be connected with! Chatterchix and Girl Power 2 Cure are now partners!

Our members will be receiving a free pack of cards donated from Chatterchix -- each card represents a girl character or her pet from a different state. On the back of each card, there is info about the card as well as info about the state. If you purchase a starter kit, you get a cool binder to keep your cards, plus a fun map to keep track of your collection and learn the locations of the US States. Great learning tool!

Sarah has enjoyed looking at the cards with her sister. I am thinking about laminating the cards so that Sarah can use them more. What a great girly way to learn about different kinds of girls AND geography. Love this!

www.chatterchix.com

Special message for Valentine's Day

2009-02-09T23:34:00.002-05:00

Every day I am amazed at the energy of mothers of Rett girls. You are all amazing. I have just posted a new page on the website dedicated to all of you. I hope you will pass the link on to other Rett moms you know.

www.girlpower2cure.org/heartsareone.html

There is a poem, an image to download for a T-shirt iron on or bag, and a Valentine card to send to another mom. There is even something for Grandmas.

We are all in this together and together we will save our girls and thousands to follow. Our hearts are one in Rett Syndrome.

Happy Valentine's Day!
Ingrid

Karly's Blog

2009-01-15T09:12:00.002-05:00

I have been following a wonderful blog by a young woman with Rett Syndrome. She is 23 and her name is Karly. She is able to communicate using "facilitated communication," using an aide to help access a keyboard.

I wanted to make sure you all read her posts! Especially the posts under the tab, "My Rett Body" where she talks about how things feel inside. Karly recently painted a beautiful picture and also composes music.

It is so beautiful to see expressed what we all hope is going on inside each of our girls: awareness, intelligence, creativity, thoughtfulness, motivation, and a sound spirit. Thank you Karly for sharing your world!

She also has introduced two other Rett girls who can communicate. I became an instant fan when she spoke about how well the Gluten Free/Dairy Free diet has worked!!! My dream is that ALL RETT GIRLS be on this diet.

Karly posts regularly, so be sure to become a follower!
http://spiritdances.wordpress.com/

New Year - New Food Choices

2008-12-30T19:54:00.002-05:00

I am not sure what made me want to write about this right now... maybe it was just having to throw away my kids Christmas goody bags from school that I am just now finding in their backpacks -- or maybe it was watching kids devour cotton candy at the circus this afternoon.

When it comes to food that goes into my kids, especially Sarah who has Rett Syndrome, I am a complete Grinch.

I find it crazy that people were rushing to trade in trains with red paint tainted from China, but would still FEED their kids food with Red dye #40... most of the artificial food dyes are made from petroleum from CHINA.

The FDA says that 59 mg/day is safe, as opposed to the 12mg/day they said was safe a few decades ago. My question: how do they know how much I am eating in a day? How am I supposed to keep track? There are no amounts listed on the labels.

Countless studies link dyes to hyperactivity, nerve damage and other awful things. The UK is phasing out all dyes in food. The McDonald's in the UK is now using real strawberries to color their strawberry sundaes. Here in the US? We get Red #40.

My New Year's wish to all of you is to treat the colors IN our food as seriously as you worry about the colors painted ON our toys. Especially for our Rett girls who are already battling enough issues.

OK, done! I am climbing off my soapbox now.... hee hee! and truly hope you all consider nixing foods with any type of artificial dyes/flavors for 2009 and beyond.

Have a Happy and Healthy New Year!!!

Ingrid

RSRT Launches Blog

2008-12-23T00:29:00.004-05:00

Just a quick note to let you all know about a new Rett blog you will be interested in! It is the blog of the Rett Syndrome Research Trust. This first post includes interviews with Huda Zoghbi and Adrian Bird.
Click here to visit the RSRT Blog!

Happy Holidays!

2008-12-19T10:33:00.003-05:00

Just a quick link and tip today as the snow comes falling down in heaps!

Here is a link to a very inspiring story of a little girl with CP who is performing in the Nutcracker!
http://spotlight.news.yahoo.com/v/11076595

And a quick tip for wrapping gifts for someone with special needs:
Go over to your local wallpaper store and get some free samples of cute wallpaper (NOT prepasted). This makes the best wrapping paper for my daughter so she cannot bite a piece off, or get a papercut -- it is heavy enough for her to pull at and get the feeling off unwrapping a gift!

Happy Holidays to all of you from me and Sarah and everyone at Girl Power 2 Cure!!!!

--Ingrid

Holiday Gift Ideas

2008-11-11T23:36:00.008-05:00

In my last blog, I mentioned the DVD documentary called "Nikki" about a girl with Rett Syndrome. Be sure to order before Dec. 1st in order for the $5 donation to go towards research. (details in last blog entry)

More holiday gift ideas for you!

Print out these cute holiday cards from our website (www.girlpower2cure.org/holiday-card) and make a donation in the name of all of your family, school teachers/therapists and friends this year! There is a place to put the name of an honoree as well.

Also, you can save $20 on a 10-pack of Girl Power CDs! These are terrific gifts for therapists and young girls of all abilities. Spread the Girl Power this Holiday Season! Click here to listen to song samples and to order: www.girlpower2cure.org/cd.

Feeling crafty? We have some really great craft ideas that make great holiday gifts. Attach one of our holiday cards to the item so they know all about your efforts to help support Rett Syndrome research. Click here to head on over to our craft gallery: www.girlpower2cure.org/gallery.

I wish you all the blessings of the season and joy of all joys as you share good times with friends and family this year!

Ingrid

Nikki: The Documentary

2008-11-06T11:27:00.003-05:00

Looking for a holiday gift that will help support Rett Syndrome research? Check out this DVD! I had the privilege of viewing this movie at a screening last summer and it is wonderful. Chock full of all kinds of emotions. A beautiful glimpse into the world of a girl dealing with Rett Syndrome.

Here is the info! (be sure to order by Dec. 1st in order for the donation to count!)

7A Productions and Producer Michael Knowles have created their first documentary, NIKKI: A Girl Who Has Rett Syndrome. It is now available for DVD pre-order (through Dec. 1st) for only $14.99 with free domestic shipping.

They will be donating $5 of every pre-ordered DVD to the Rett Syndrome Research Trust. Please order your copy now and spread the word!

http://www.nikkithedocumentary.com/

--Ingrid

"She just took off!"

2008-10-16T23:38:00.005-04:00

OK -- Can you feel my huge grin strrrrrretching from ear to ear? Today is a banner day and I want to share it with you!

First, Sarah just got a new walker last week.... really her first one, because the old one just gathered dust since she hated it so much. Well, she loves this one. It is called an "Up N Go" (www.easy-walking.com). You can see Sarah using it on her YouTube page. I highly recommend it to any of you looking to help your daughter learn to walk!

Today, after school, her aide told me that she let go of Sarah's walker for a brief moment to get a book, and Sarah "just took off!" She "ran" away across the room!

So this is her very first taste of freedom. Well, once about 4 years ago, she took 10 steps in a walker, but it just wasn't so deliberate --- today Sarah new exactly what she was doing and she was beside herself!

Along that theme..... you must watch an amazing video of another little girl. Her name is Teya. She does not have Rett, but she does work her tail off to learn to walk after many years of therapy using the Cuevas Medek technique. It is truly a beautiful video to watch. Grab the tissues and go to www.teyawalks.com or www.cuevasmedek.com/teya_mov.html.

Ingrid

October List

2008-10-01T22:17:00.006-04:00

It's October, folks! And that means Rett Syndrome Awareness Month. Let's make it more than “awareness” and take some action.

Don't know where to start? Here is your Rett family "to do" list for October. Not a Rett family? You can still help with #3 and #4!

FIVE THINGS TO DO NOW TO HELP YOUR DAUGHTER:

1. Sign up for the Rett Syndrome Research Trust (RSRT) newsletter. The "register" link is in the "Families" section at www.rsrt.org.

2. Join Girl Power 2 Cure with a Family Membership -- it is just $5/mo and you get cards with your daughter's photo plus a web page for accepting donations in her honor, plus more! www.girlpower2cure.org/membership

3. Get your school (and other local schools) to host a Dress Up 2 Cure Day on April 1st. www.dressup2cure.org

You have to approach them ASAP to get it on the calendar... see if a group at school or a girl scout troop will take it on as a service project. All the info, plus a step-by-step school guide is at: www.dressup2cure.org/schools.
* if anyone is looking for a part-time job, you can get paid to do this! www.girlpower2cure.org/recruiter

4. Get at least 10 people (including yourself) to Sponsor a Drug in your daughter's name ASAP -- www.rsrt.org/news/

RSRT has an incredible opportunity for families to make a direct impact on this crucial research project to test 3,000 FDA-approved drugs/compounds on the Rett mice. Imagine there might be an FDA-approved drug sitting on the shelf right now that could help our girls!

*** 3,000 donations of $168 each will fund this project in its entirety - let’s get it done.

5. Forward this list to all of your Rett family contacts --- and then get started!

Thank you for doing your part in finding a cure for our girls,

Ingrid Harding
President and Founder

To infinity....and beyond!

2008-09-19T16:47:00.003-04:00

I never thought a quote from a Disney movie would be my latest inspiration. But I guarantee it will be yours too after you read this story!

http://www.cnn.com/2008/US/09/10/rescue.at.sea/

Go ahead and read it first, then come back to read more here.....

Amazing, isn't it? The love this man has for his autistic son is so beautiful. The sheer determination of the pair is beyond belief. As I read the story, I felt like I was reading an analogy of my life with Sarah and Rett Syndrome.

Getting swept out to a place I couldn't get back from. Feeling in the dark, yet empowered by the spirit inside my little girl. Feeling the pain. Feeling like I wanted to give up. Calling out, but to have no response. Wishing on the stars. Surviving the night by sheer will. The doubt. Then the triumph that Sarah is surviving day by day through bravery, patience, and love.

If you feel "swept away" --- call out "To infinity!" ---- "And beyond!"

They battled for 14 hours. You may have already battled 14 years or more. Keep paddling. Take moments to float and look at the stars. And keeping reaching for the "beyond."

Our girls will be survivors one day because of it.

--Ingrid

School Time!

2008-08-16T22:27:00.004-04:00

Time to get back into the school scene! While it is nice to have a routine back in place, it is also a super anxious time for our girls as we try to get everything in place to make their time at school a success.

Here are some things to try:
(the info mentioned here is all available for your use at www.girlpower2cure.org/resources)

Create a school guide
Visit the link above to view my daughter's guide. Her teachers and therapists refer to it more than I ever imagined. It is all about how Rett Syndrome and Sarah's needs in the school setting.

Send home a letter to parents
I had to jump through bureaucratic hoops to get this OK'd, but it was really worth it. It is just a simple letter explaining Rett Syndrome and Sarah, plus our family contact info for questions. This is how Sarah made her very best friend, Mara... her mom read the letter to her and Mara sent Sarah an email. They have had a special bond ever since.

Present to the other children (up to grade 2)
There are two great things that helped set a great tone with Sarah's class. First, I read "It's Not Easy Being Big" (a Sesame Street book). It is all about how Big Bird cannot play many of the games with the other kids because he is so big. Then the book goes on to show how they "adapt" their games to help Big Bird out. Like tying two jump ropes together to make it big enough for him. I went on to explain how Sarah's helpers would be coming up with ways to "adapt" things for Sarah...and that they could come up with ideas too! Throughout the entire school year, those kids were always trying to figure out how to include Sarah.

Second: I played a simple game with the kids. I spoke about how Sarah can hear and understand, but cannot speak. Then I asked them each their names...BUT they were not allowed to say them aloud. I remarked, "see, you know your name even though you didn't say it out loud!" They thought that was pretty cool. Then I brought in a color board with six colored squares made from felt (3 on top and 3 on bottom). I talked about eye communication, then had them each tell me their favorite color with their eyes. It was really fun to see them get excited when I knew their answer just by looking at where they looked.

These ideas are so simple, yet incredibly powerful. I wish you all the best of luck as the new years gets started!

Update
An update on my last entry about creating a "Summer Book." Well, I have to confess even I did not follow through with my own suggestions. But we did have a great summer. Funny, but Sarah helped me out without my even knowing it! On my list was to grow something I could eat -- I did not -- but Sarah grew parsley, basil, and tomatoes in her summer school garden!

Great news!
On behalf of Girl Power 2 Cure, it is with great pleasure that I announce our newest team member! Kelly Butler, a Rett mom from Indiana, is our new Program Director. She will be helping us take Girl Power 2 Cure to new heights! Be sure to send her an email at kelly@girlpower2cure.org if you would like to take advantage of new programs that we are putting together. We will have some cool new opportunities for you to check out in the next week or so!

The Summer Book

2008-07-08T11:06:00.004-04:00

Summer is here! Well, about half over for those of you who start school in early Aug! Now I know you will cringe at the thought of a project -- but I hope you will find this one beneficial!

Day to day with Rett Syndrome usually evolves around our daughter's comfort, therapy, trying to communicate, reading, and lots of hugs....but, there are some important things that may go missing -- learning about things like planning, anticipation, memory recall, and creativity.

Here is a project that brings all of these things together for a fun summer-long activity! (or anytime, really!)

THE SUMMER BOOK

Here is what to do:

TASK ONE (planning): Get the whole family together and each come up with 3 things they want to do/accomplish over the summer. Write down on a big sheet of paper so everyone can see.

Ways to get your daughter involved:
If she is good with her eyes/touch to make choices: give her some choices using your voice or a photo off the internet or cut out of a magazine. Or if someone has more than three things, have her help them decide which to cut.

If you have a voice output switch: when you are done with the lists, read them into the switch for her to "recap" for the group what the final results are.

Our family's results:
Mom wants to: grow something she can eat, paint a watercolor picture, take a canoe trip
Dad wants to: visit his mom and dad, take a trip to Boston, visit the cranberry bogs
Pierce (big brother, 10) wants to: learn to body surf better, start to learn the guitar, visit the zoo
Gretchen (little sister, 5) wants to: go to the beach, see Grandma and Grandpa, play miniature golf
Sarah (with Rett, 7) wants to: go in a sailboat, ride in a train, visit the aquarium

TASK TWO (anticipation): when a time is approaching where some of the things on your list are feasible, write each one on a card (add a photo representation to help!)

Let her pick what your family/ or a family member will do that day! After she picks you can all talk about how to prepare for the day. You can make a picture list of things to bring and even have her help you 'check off' the list the day you are getting ready.... ie, do we have this? "yes or no?"

TASK THREE (memory recall): Be sure to take pictures of your day!

Ways to get your daughter involved:
Invite some friends or family over for her to tell all about the family's day and share the photos... or have her tell all about it at school show and tell. Read descriptions of each photo into a voice output switch or make a power point presentation that she can advance from slide to slide herself.

TASK FOUR (creation): Put all of your photos into a book! Keep it simple with some captions or go hog wild with the whole scrapbooking gig. Since I know I never have time for that, I cheat and upload photos to an online bookmaker site like picaboo.com or mypublisher.com. When it comes in the mail, the kids can color on the pages/add stickers and you can write the captions in yourself to make it more personal!

Now you have a book you can read over and over with your daughter, and she will feel such a big part of the whole process!

Ways to get your daughter involved:
Record messages on her voice output switch to retell a story from each page of the book. She can then hit the switch as you turn the pages. She can share with friends, relatives, teachers, and neighbors all about her summer!

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We take these kinds of mental skills for granted. Even if you do not accomplish this project, look for little ways during the day to have your daughter exposed to planning, aniticipation, memory recall, and the art of creation. Plan a meal a few days in advance and do the shopping together, make up a story together using magazine photos and retell to the family after dinner, etc.

Even simpler, just remember to talk to your daughter about the future and the past. It will help you add in more conversation topics and make her connection to what is going on around her even stronger.

Have a great time!

Celebration Ideas

2008-05-12T12:52:00.004-04:00

Wow. Mother's Day is a powerful day. The spotlight right on all of my motherliness... I faired pretty well. A pretend tea party and lots of homemade cards -- a little frisbee in the yard. It was a special day.

Special days are tough, too, though... sort of milestones... also days when Sarah's daily struggles are illuminated as she cannot really join in on the fun. And her pain seems to shout out even louder.

So, I have been thinking about the months to come --- picnics, birthday parties, 4th of July, weddings, baby showers, etc. What are some ways to help make these days better for her?

These things are a little "all over the map" -- but I want to share them with you!

PREPARATION:
Try a trial run. If you know you have a picnic event or other event, take your daughter there the day before just to walk around and talk about what the next day will be like. Tell her about who you will see, what will happen, where you will eat, etc. Anything to give her time to know you have it all planned out, so her anxiety levels may be less on that day.

HELP:
Twice now I have brought a volunteer helper with us to an event. She is 14 years old. Having that extra set of hands is amazing. Even if it is just to stand with Sarah in her wheelchair while I take our littlest to the bathroom. The less juggling I have to do, the less stress from me that Sarah will pick up on.

ADAPTATION:
If you are having a birthday party for your daughter or attending another specials needs party, consider wrapping your gift in vinyl wall paper (available as free samples at any wall paper store)! Not prepasted though -- just plain. This way Sarah was able to unwrap a present without papercuts or getting pieces bitten off into her mouth!

And FINALLY:
Why not help get the word out about Rett Syndrome with a special contribution page on the Girl Power 2 Cure website! When my friend Jen got married last summer, she asked if I could do this for her wedding registry --- of course! We have also set up pages for baby showers, graduations, and birthday parties. Here is the link to Jen's page: www.girlpower2cure.org/Reid-Andrade.

I can put up photos, a custom message, most anything that will make the page extra special.

All of the funds raised go directly to our 2008 Research Fund for Dr. Adrian Bird.

Hope you all had a great Mother's Day and will have many great outings with your daughters this summer!

Save them Horton!

2008-03-23T21:49:00.006-04:00

Has Dr. Suess ever made you cry? We'll there's a fist time for everything. Today I took the kids to see "Horton Hears a Who."

I am obviously completely obsessed with Rett Syndrome, because this movie is about OUR GIRLS! No, I am not high on chocolate eggs....I was bawling when all the little Whos in Whoville were shouting out "We are here!" and no one in the jungle could hear them, except Horton...because of his big ears.

No one can hear our girls. That "jungle" world out there is whizzing around so fast, they don't know we exist -- how special these girls are, even if they are just a "speck" in the grand pile of problems people are facing.

We need to get louder, folks! We need a Horton to hear us and tell the world. Research on Rett Syndrome is further along than most other disorders. It is the Rosetta Stone of all neurological disorders. Our girls are saveable. There is so much hope! We need to shout it from the rooftops!

And as a back up, I plan to appeal to Horton as well. I mean, why not dream a little that a huge cartoon pachyderm might come through?

Horton! We are here! We are here!

A person is a person no matter how small..... a voice is a voice no matter how small.

With love,
Ingrid Harding

P.S. And more proof the movie was about Rett Syndrome: the mayor of Whoville had 96 DAUGHTERS and just one son! :-)

***Note: I have added a quick "resource" list on the right... please email blogATgirlpower2cureDOTorg with your additions!

Jobs and tasks

2008-03-17T21:06:00.000-04:00

Welcome! This is the first posting to the new Girl Power 2 Cure blog! The goal of this blog is to share anything and everything that will help anyone connected to a girl with Rett Syndrome. Please share your ideas and successes! At the bottom of each post, I will add a "favorite find" or tip as well.

I have been inspired today to write about kid responsibilities by my 5-yr-old "typical"child. We made a good milestone tonight: after her bath, I went to get her PJs while she was wrapped up in her towel. When I came back, I just opened the door and set them on the toilet seat. She got dressed herself. This is HUGE. Well, it would have been Huger (word?) if Sarah (our Rett girl) did that, but still huge in the moving ahead with our littlest.

This got me to thinking about things I actually ask and let my kids do....or am I just getting from task to task. I do need help, and I have two kids who can. And I am tempted to say, plus one kid who can't, but this is what this post is about.

I ask a lot of Sarah. Be strong for therapy. Swallow yucky supplements. Please sleep through the night, etc. But these are not actual tasks like I ask the other kids. Lately, I've had my other two (ages 9 and 5) transferring laundry from washer to dryer and making their own lunch. I admit I felt silly after realizing my almost 10-year-old son couldn't even use a knife to cut an apple. Not long ago, boys could use knives for all sorts of things. So I find myself having to get creative with all my kids of all abilities.

And I have to be careful not to leave Sarah out. So, how does one "ask things" of a child with little to no body control, voice, or hand function? Here are some things we've been working on these past few months. We have had more success than I thought....and the rewards are grand. The beam of pride in her eyes says it all.

*Note: These have taken months of slow step-by-step introduction, except two things that she did tonight!

1. JOB #1: Push or pull a door open. Sarah can walk with major assistance. When we approach a door, she can now figure out if it needs to be pulled or pushed! And she can do this all by herself now. For the first two weeks, we would walk up to a door and I would praise her if she just moved her arm a little. Then, I would take her hand and help her open the door. Soon, I waited until she actually reached out enough to touch the door, then I would take her hand and help her open the door. Next, she touched the door knob, then I would help her finish. Then she pulled a little and the door would wiggle, then I would help her finish. Soon she "owned" pushing a door open. But then we encountered that the door would need to be pulled if coming from the other side. She figured that out much quicker. Now it's a piece of cake! And it's her job. We had a few times of standing there for a few minutes, going nowhere. But now she knows the drill.

2. JOB #2: Flush the toilet. Now, instead of going right to the bathroom door and opening it, we stop and she flushes the toilet. Well, almost. We are still in phase 3. Phase 1 was getting her to realize that even though we were standing by the door, there was something else to do first. If she put her hand on the doorknob, I took it off and leaned it over to the toilet handle. Soon, she was able to do a large side swipe swat which could knock off the tissue box. She thought that was funny. I wondered if she would even be able to land her little fingers under the lip of the lid, catch the handle and push. We have been working on it for three months. Step by step, inch by inch, she can now with perfect precision, reach out, place two fingers on the handle and push. She just can't push hard enough to make it flush, so I am still doing the last part for her. So, I am hoping one day soon, I will be posting a hurray, she flushed the toilet blog!

3. JOB #3: Get ready for your bath. This one is super complex, so I have picked just one task. I seat her next to the tub and place her bath toys in a box next to her and ask that she put the toys she wants to play with in the tub. We've been working on this for almost a year. She usually knocks over the box and chews the toys, that's it. If I hand her one, she will try to hold it, but it drops after a second. So I help her hand over hand put a few toys in the tub. One day a few months ago, she surprised herself by slinging one up and over and in! The next week, she used this new skill to toss one into the toilet! She laughed so hard! But tonight, I put the box in front of her, she grabbed her favorite yellow ring and calmly reached her arm up and dropped it in the water! Go Sarah! So, I, the always push forward mom, said, good job! Now take your socks off. In my head, I knew this would probably take a year or more to master, but I was determined to start right then. Well, you will love this. She started rubbing her feet on the carpet and one sock slid right off! And she giggled!!!!

So, there is your inspiration to pick a task and follow through with it. No matter what your abilities are. Sometimes having to break things down to their tiniest parts and go ever-so-slowly gives us an amazing outlook on the rest of things that seem so daunting.

FAVORITE FIND:
Frustrated with trying to find a walker and stander, plus a way to transfer your daughter? Check this out! I love this walker called the UP-N-GO. It is not in any of the catalogs or websites as far as I know, but our new rehab specialist that we saw at the Rett Clinic at Montefiore Children's Hospital in the Bronx recommended it to us! Go to http://www.easy-walking.com/!