Thursday, July 31, 2008

Awareness in the village.


My dear friend, Jess, has an achingly beautiful blog dedicated to her family, and dedicated to awareness and advocacy around autism. It's a blog about being family, about the acute joy and pain of parenting, about living life fully, and reaching out and reaching in. Every post hits me in the heart. In a good, growing way(and I am not even a parent.) Anyway. She gave me permission to post her entry, Triage.

It's about helping and being a village and being aware and taking action. Please read it. Please. Then act. Share Billy and Katy and Scott's story.


Triage, by Jess Wilson
My friend, Scott called me yesterday. Whoa! Don’t just keep reading. Click on Scott’s name and read the story. Please. Pretty please. This is important, folks. This MATTERS. You click. Read the whole article. I’ll wait.

“I need help, Jess.”

Sometimes, life is a game of triage.

What matters most? What needs my attention most urgently? Who might literally die if I don’t take five minutes to get educated and HELP.

We fight for a better life for our children.

Scott and Katy are fighting for their child’s life.

We fight for awareness. We walk and hand out buttons and magnets and scream from the rooftops and we watch hours and hours of footage about autism. 1 in 144.

How many people do you know who know what SMA stands for? Yet it KILLS MORE BABIES THAN ANY OTHER GENETIC DISEASE.

We have big names. Bob and Suzanne Wright - love em or hate em, they know people. They know a LOT of people. With money. A LOT of money. And Influence. Yup, a LOT of influence. Jenny McCarthy - love her or hate her, she is VISIBLE. She’s on the cover of magazines. Mike Savage (I’m not giving you the choice on this one and I sure as hell ain’t linking you to him) - hate him, he talked about autism because autism is VISIBLE.

SMA isn’t sexy. It’s heartbreaking. It’s the stuff your worst nightmares are made of. It’s the stuff that no one wants to talk about because we can’t bear the pain of it. But Scott and Katy and so many parents like them live that pain every day.

We HAVE TO HELP. Children cannot die on our watch when they don’t have to. No one should have to live this way.

We are hurting.

They are dying.

Triage.

SMA has been chosen by the National Institute of Health to be a model for translational research because it is the closest to a treatment or cure out of 300 neurological disorders. Think about that. We are this close. This flippin close.

We are all connected. SMA genetic research in the “Genomic Modulation of Inherited Genetic Diseases” project may provide novel insights into potential ways to treat SMA and 40 plus similar diseases:

Tay-Sachs Sandhoff
Parkinsons
Alzheimers
Friedreich’s Ataxia
Spinocerebellar Ataxia Type 1
Spinocerebellar Ataxia Type 2/Episodic Ataxia Type 2
Spinocerebellar Ataxia Type 6/Spinocerebellar Ataxia Type 7
Deafness/Dystonia
Myotonic Dystrophy
Duchenne Muscular Dystrophy
Late Infantile Metachromatic Leukodystrophy
Late Infantile Neuronal Ceroid Lipofuscinosis
X-Linked Adreno-Leukodystrophy
Menkes
Types A and B Niemann-Pick Disease
Fragile X
Machado-Joseph
GM2A
Gaucher Disease
Sialidosis and Galactosialidosis
Infantile and Late-Onset forms of Neuronal Ceroid Lipofuscinosis
Classic Late Infantile Neuronal Ceroid Lipofuscinosis
You see Fragile X in there, right? I knew you wouldn’t miss that.

They need money. $1.3 million to be exact. They need to help fund incredibly promising gene therapy research.

If beautiful, delightful Billy were your child, you’d have called me too. You’d have called anyone and everyone you know who might be able to HELP. Please, pass this on to anyone who will read it.

It takes a village, friends. And the village that I want to be a part of, no the village that I KNOW I AM A PART OF, fights for its children. All of them.

HELP

1 comment:

jesswilson said...

you are, without a doubt, by far the coolest pastor i know