Wednesday, September 30, 2009

Rett Syndrome Awareness Month

I spent today on the fundraising grind. Handing out posters and delivering and hanging them at different locations all over town. Like I said earlier everyone I talked to told me to get on facebook and twitter and tell people...and ask them to tell people..and ask them and them and them.So that is what I am doing. Some Rett parents don't fund raise because they don't know how and it's stressful..believe me I know that one.. You can help by spreading the word. A few emails or posts a month.For those not in the Rett Family..Here I speak for myself. You often ask what you can do?? What do we need??We need treatment. We need a cure. We need equal rights. We need people to know and we need people to raise funds now. Rett Syndrome is by and large ignored by the general community.. Why? Because people don't know. They can't help if they don't know...Can you put up a jar in your salon,fire station,shop or store??? I can send you any info you need. Anytime!

The above is what I posted to facebook and myspace 24 hours ago. I was so excited. In 24 hours 4 other people reposted it. 4 out of hundreds. In the last 24 hours I raised $10.00. Ten dollars from another Rett mom who felt sorry for me.

When you have a little girl who is born as normal and healthy as can be and you love and enjoy every little normal thing then sometime out of nowhere and before she is two..everything just goes away. Everything she has learned. Everything you taught her. All your hopes and dreams for someday.

Four short months after Abby was diagnosed a complete reversal of symptoms was discovered by Adrian Bird. We were..and still are so hopeful..But it is up to us. Us,our friends and our families to make this happen.
You can read about Dr Birds findings at the link below

What is Rett Syndrome??

Debilitating neurological disorder that predominantly affects females.
The most severe form of autism.
The leading cause of severe impairment in girls - most cannot speak, walk or use their hands.
As prevalent as Cystic Fibrosis, ALS and Huntington's.
Another little girl is born with Rett Syndrome every 90 minutes

There are just a handful of disorders that only affect females. Breast cancer is the most prevalent. Rett Syndrome is just as devastating, and affects a potential one in 5,000 girls.Condemned to an entire lifetime of struggles, these girls have been robbed of their ability to speak, walk, crawl, use their hands. They depend on others for every part of their day. Complications include seizures, sudden death in their sleep and scoliosis. Rett Syndrome is CURABLE! Amidst the mass confusion going on within their central nervous systems, they are smart, strong, and waiting patiently for us to unlock the door to their recovery.Researchers at Stanford, Albert Einstein, Emory, Case Western, Harvard, and dozens of other top-notch institutions are sinking their teeth into Rett Syndrome.Why?Not only will their work help thousands of girls and women worldwide, but their findings have a direct impact on research on Autism, schizophrenia, bipolar disorder, Alzheimer's and many other disorders.In essence, our girls may hold the key to a cure for millions of people suffering from dozens of problems.Their cure is a HUGE cure!

You can donate anytime in October in Abby's name by clicking here

You can donate anytime..all year clicking here

Thank you

1 comment:

Karlie Grace said...

AWESOME POST TERRI!!! I'm soo proud of YOU! You're making a difference! Keep posting, they will listen ;) Good thing our girls have persistent, loud mouth mommies, WE WILL BEAT this monster that has taken so much from our babies!!!