Wednesday, November 4, 2009

Rett Syndrome Awareness Video

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:

Tuesday, July 14, 2009

Rockin' for Rett

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!)


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

Email to get your kit and get ROCKIN!


Thursday, July 2, 2009

Wheelchair on EBAY

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


Tuesday, June 16, 2009


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! 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!!!



Thank you!

Monday, June 1, 2009

Help Spread Awareness!

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!

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

Thursday, May 21, 2009

Rett Syndrome Conference Tips


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!

Thursday, April 9, 2009

Flowers are blooming!

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 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

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

Monday, March 30, 2009

Sweetest Thing

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! -- chip in the change from your "bowl" in April. And next year, start a team of your own!

Friday, March 13, 2009


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!

Monday, February 9, 2009

Special message for Valentine's Day

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.

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!

Thursday, January 15, 2009

Karly's Blog

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!