WE NEED TO ALL DO THIS ON 8/16/08--EMAILS TO NIH AND OTHERS

[Guest guest]

Okay--it's worth a shot. Everyone get their story ready. Just stick to the facts of when you got it, how it affects your life, the symptoms you have. Also say whether a member of your family also has it. Make it as heart wrenching as we know this condition is. They need to see how very very devastating it is--not just an annoyance. Mention if you have thought of suicide or attempted it. But don't try to self analyze how or why you got it. This will just give them reason to write it off as psychological. We need to show them how it just comes on overnight. Many of you don't remember when it came on because you have had it for so long.

The kids on this sight need to emphasize that they were normal, and can still remember being normal.

Below are several key addresses for the people at the NIH. But also I put a couple of scientists from the House Ear Clinic. Might as well try them too.

We need lots of stories to be effective. Email me at k.howe@... to let me know that you are going to participate. I want to send them all on 8/16/08 because several doctors try to catch up reading their emails on the weekends. This will give them all weekend to glance at them.

I'm going to send individual emails so they don't just think you sent out your story to a bunch of different doctors.

Remember to email me and let me know if you are going to do it. If I don't hear from very many people, I think we should call it off and wait until everyone is ready. Let me know.

Thanks,

Kathy

Emails: Don't send until we are that we have a lot of people doing it

Dr. Jon McKeeby: jmckeeby@...

Dr. : dhenderson@...

Dr. Galin jgalin@... ororor

The Rare Diseases email: ord@... _

House Ear Clinic Scientists:

Dr. Carolina Abdala: cabdala@... (She is in charge of Children's Auditory Research)

Dr. Friedman: rfriedman@... (He in charge of Hereditary Disorders)