Legislation Issues Affecting Alternative Therapies

[Guest]

Hi

 

I'm going to the National Conference and will be going to Capital Hill to speak to our senators/reps while there about ts. I was just wondering if anyone knew of any legislation issues affecting alternative therapies for ts. If anyone knows of any just let me know. I'll be telling my story, but I didn't know if there were any current issues that might be going on.

 

Carolyn

[Sydsmom]

I don't know of any issues but I just wanted to say "Way to go" and encourage you on this journey. Thank you for being a voice for those with TS!!! Can't wait to hear how it goes Carolyn.

 

My aunt is very invovled in alternative issues with autism but knows tons about everything and has also been to Washington and other conferences. She speaks now at many of the conferences. If you want to email her and ask her if she knows of any legislation issues I know that would be ok. Her email is anagramy@bellsouth.net and her name is Ann.

 

 

Goodluck!!

 

Lisa

[Guest]

Thanks for the info Lisa. Your welcome for being a voice for those with TS. I'm really nervous about it, but at the same time really excited. I'll let you know how it goes.

 

Carolyn

[Chemar]

Carolyn....I am sooooo pleased that you are going to do this!!

You are a shining testimony to the benefit of alternative therapies

 

I cant think of specific legislation issues....but it sure would be great if you could just reinforce how valuable it is for folks with TS and other disorders to have the option for supplements instead of meds!

 

also, something I feel strongly about is for those kids at school who struggle to get the accomodations they need for their TS/OCD etc....I dont know if you have followed the discussions on BrainTalk of the mom going thru a nightmare time with her son's school.......I sure wish there were stronger Federal legislation in place to ensure that kids with neurological issues get appropriate accomodations in the public school system in all the states, counties etc. Some districts are so accomodating while others are just plain awful. Maybe if there was a national law.....there would be uniform procedures.

 

CONGRATS on this Carolyn. We are all so proud of you

[Sydsmom]

Carolyn, I emailed my aunt and I think she'll be at the rally too. She said to email her with any questions or anything.

 

Lisa

[Giselle]

WHOO HOO! YOU GO GIRL! So proud of you! Good luck and have a glorious time!

Giselle

[Guest]

Thanks Everyone for the great comments. It helps a lot!

 

Carolyn

[Guest]

Hey Everyone,

 

I'm back from Washinton D.C. The trip to Capital Hill went pretty well. I saw the legislative assistants of both my senators. I did not see a House Representative because as many times as both I and the TSA group tried to follow up on getting an appointment my house representative ignored us.

 

This was my first time ever doing something this large and I spoke to mine alone. My first appt. with one of the senator's was rather scary and disappointing. Our meeting actually took place in the coffee shop so there were a lot of people around and it was very noisy. He acted as if he didn't care. We were giving them the HBO Documentary and when I gave it to him, he said, "I don't have a DVD Player." I didn't even know how to respond to that one.

 

My 2nd appt. with the other senator's assistants went very well. I met with 2 assistants. They acted like they really cared to hear what I had to say. They asked me questions. By the time I got back they already sent me an email including this: Thanks for sharing your story with Joe and me today. You are a great spokesperson. I admire your decision to lobby Congress alone. Your story helps us understand Tourette Syndrome better. Please keep in touch and let me know how we can be helpful.

 

I felt very good about that appt. I was actually the first one from NE to go and lobby to our senator's on TS. So even if the first one didn't go well atleast I made the 1st attempt to speak for NE. I spoke to them on funding as that was a requirment, but the majority of the time I had I spent expressing how alternative treatments need to be an option. I told them about my personal story and through that they also got some of the education issues. I also gave them a copy of my story. By the way I didn't pick up any tics at the conference.

 

Carolyn

[Chemar]

Way to go, Carolyn!!!!

 

we are sooooo proud of you, and I sure hope that the senator whose 2 assistants cared will act on their report on the meeting with you!

 

as for the other one...well, maybe try emailing his senator and express your dismay at the meeting and state in the email what you were trying to get across....hopefully something will get through.

 

were you at the same conference that Sheila was at?

 

so glad you didnt "catch" any tics

 

again, congrats on what you did!

[Guest]

Thanks Chemar. Okay, I'll try emailing that one senator. Yep, I was at the same conference Sheila was at.

 

Carolyn

[Sydsmom]

Way to go Carolyn. So glad you posted the experience. I'm sure you'll just get better at all this and become a very loud and much needed voice for TS. Thank you for stepping out and being a voice.

 

Lisa