Guest Blog: Every Girl Deserves a Running Start

March 7, 2011

With April’s Autism Awareness Month right around the corner, we want to tell you about Rett Syndrome, the most severe form of autism, which almost exclusively affects females.

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

Every girl deserves a running start.

But what if you are a girl who can’t run? Or walk? Or speak? Or even use your own hands? Where does that leave you?

It leaves you in a more powerful place than you might think.

There is a little known syndrome called Rett Syndrome that robs girls of the physical abilities they need to have a running start in life.  This severe neurological disorder primarily affects females.  Every 90 minutes it rips another girl’s life to pieces – leaving her needing 24-hour care full of feeding tubes, countless therapies and special equipment, seizure medications and possible scoliosis surgery. It is as prevalent as Cystic Fibrosis, ALS, and Huntington’s Disease.

Girls with Rett Syndrome can hear every word going on around them, but cannot communicate.  They see everything around them, but cannot reach out and touch any of it. They are trapped.

So, where is the power?

Rett Syndrome is the leading genetic cause of severe impairment in females, but it is also a disorder that has provided more answers than any other neurological disorder. Scientists have discovered the causative gene. They have pinpointed the protein affected by the gene defect. And, incredibly, they have been able to prove it is completely REVERSIBLE.

Rett Syndrome is being touted as the Rosetta Stone of all neurological disorders, putting these close to half a million suffering girls and women in a unique position. Researchers will be able to apply what they learn from Rett Syndrome to help hundreds of millions of people suffering from dozens of disorders.

In 2006, I founded Girl Power 2 Cure,  (www.girlpower2cure.org), a nonprofit organization  dedicated to raising awareness and funds for treatments and a cure for Rett Syndrome, after my daughter, Sarah, was diagnosed.

When Sarah first entered Kindergarten, I pushed to have her “included” at our “regular” school.  I was nervous. Sarah can be disruptive and is in constant motion with hand wringing, erratic breathing, legs kicking… the works.

My fears melted away on that first day, though, when I saw how her peers, especially the girls, were drawn to her. They cared for her. They read to her. They picked up the things she knocked over by accident. They begged to push her wheelchair.

Before then, I didn’t pay much attention to “Girl Power.” But, when I saw those girls actively using their innate Girl Power to care for Sarah and make her world a better place, I knew they were the answer.  This generation of girls could use their Girl Power TO CURE something. They could CURE their fellow girlfriends who are suffering from Rett Syndrome.  And they could see it happen within their lifetime.

Since 2006, Girl Power 2 Cure has engaged thousands of girls across the country through volunteer programming, leadership projects and events. Our goal is to reach girls across the nation who are looking for a cause to support with their volunteer time, energy, and ideas.

We hope that once girls learn about their peers who are suffering from Rett Syndrome they will be inspired to take an active role in helping to advance a cure.

Girls helping girls. Now that’s Girl Power!

Visit us at www.girlpower2cure.org and see how you can help!

— Ingrid Harding, Founder and Executive Director of Girl Power 2 Cure, Inc.

Leave a Reply

Your email address will not be published. Required fields are marked *