IBD/Ally's Law Awareness Day in Illinois

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ally's law mom
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Date Joined Feb 2008
Total Posts : 35
   Posted 2/8/2008 1:23 PM (GMT -7)   
There will be an IBD/Ally's Law Awareness Day in Springfield on April 11th. It will start around 10 a.m. and we are hoping to have it in the rotunda of the capitol building. We may be able to get a proclamation/resolution from the Governor and possibly meetings with state legislators. Please let me know if you would be interested.

dakotagirl
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   Posted 2/8/2008 2:21 PM (GMT -7)   
Awesome! I hope it goes well :)
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
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ally's law mom
Regular Member


Date Joined Feb 2008
Total Posts : 35
   Posted 2/28/2008 7:40 AM (GMT -7)   
just a reminder...this day looks like it will bring a lot of awareness to IBD...anyone who is interested in traveling to Springfield, please let me know

chicagoatc
Regular Member


Date Joined Sep 2006
Total Posts : 133
   Posted 2/28/2008 8:31 AM (GMT -7)   

I know I should probably know, but could you explain a little about what Ally's Law is about?

Thanks!


29 years old; diagnosed since 1997 (but I've had it forever)
Current meds:
-Prednisone 7.5 mg!
-Re-trying Imuran; I'm at 100 mg now...but it's making me so tired!
-Asacol 12/day
-Failed Remicade (8/06-8/07)
-Calcium + Vitamin D(for my steroid-affected bones)
-Prenatal vitamins (for the extra stuff, not for pregnancy)
 


tjf
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Date Joined Dec 2005
Total Posts : 3238
   Posted 2/28/2008 8:48 AM (GMT -7)   
I just wanted to tell you I think it is great what you are doing. I just googled and read your daughter's story. Please keep us posted!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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ally's law mom
Regular Member


Date Joined Feb 2008
Total Posts : 35
   Posted 2/28/2008 9:13 AM (GMT -7)   

Thank you!

Ally's Law states that any retail establishment with three or more employees present must allow a customer with a medical emergency access to their private restroom. The history is that a large retail store in Norridge wouldn't let Ally use their private washroom when she was in a flare. The manager said that he was "making a managerial decision." Ally was 14 at the time. When we walked out of the store, Ally and I decided something needed to be done.

We contacted our local State Representative and the media and within a year, the Restroom Access Act, otherwise known as Ally's Law was created.   It has passed in Minnesota and Texas and is pending in about 12 or more states.

Thanks for asking.

Lisa

 


BTC
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Date Joined Dec 2007
Total Posts : 96
   Posted 2/28/2008 10:23 PM (GMT -7)   
I HATE to be somewhere and ask to use the restroom and they say they don't have one. PLEASE - what you mean is that you just don't want to let me use the one that YOU use. It's so hateful and demeaning. Do you know how we can get this law in our state (NJ)? Also, I have wondered about some kind of ID or sticker that would go on a DL to designate someone with a true need. People that need a handicapped parking pass have that - it seems we could have something similiar. Thanks!

ally's law mom
Regular Member


Date Joined Feb 2008
Total Posts : 35
   Posted 2/29/2008 4:17 AM (GMT -7)   
The easiest way to get started is to go to www.crohnsandme.com. The Advocacy link will bring you to directions on how to simply click and a request will automatically be sent to your local Representative and Senator. You can also see Ally on the site!
 
Ideally you will hear back from one of the legislators that is being contacted. The next step would be to set up a meeting about why this legislation is so important and needed. At the meeting, bring information about Ally's Law such as the actual wording, information about IBD and statistics of how many people have Crohn's or colitis, states that have already passed it or who have it pending, specific instances or places where access has been denied, your contact information, etc. It's always nice to follow up with thank you notes. Find out what the next steps are and make sure you stay in contact with them.
 
I believe many legislative sessions are coming to an end, but you can get things going for when the session starts again in the Fall.
 
Within the past month I have spoken with people in WA, OR, TN, WI who have recently held a meeting with their legislator. The bill is pending in many more states in various stages of legislation.
 
I'm definitely willing to help with any questions. Thank you for your involvement!  

RobynO
Regular Member


Date Joined Feb 2008
Total Posts : 24
   Posted 2/29/2008 6:08 AM (GMT -7)   

Hi Lisa!

I might be able to go things are changing form me at work and I may have a little bit of flexibility. 



ally's law mom
Regular Member


Date Joined Feb 2008
Total Posts : 35
   Posted 2/29/2008 6:31 AM (GMT -7)   

RobynO,

That would be fantastic. Let me know!

Lisa


ally's law mom
Regular Member


Date Joined Feb 2008
Total Posts : 35
   Posted 3/1/2008 9:12 AM (GMT -7)   
We are going to be setting up meetings between the attendees and their respective legislator, so I will need to know who will definitely be attending. We will most likely be taking the train to Springfield Friday mornining and coming back Friday night. Ally will be speaking as well as several others. We already have at least 4 groups who will have tables set up and it looks promising that the Governor will be available as well.
 
If you are interested or are definite about going, please let me know and I will get more specifics to be sure your legislator is available to meet.

marty1976
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Date Joined Nov 2005
Total Posts : 2045
   Posted 3/1/2008 3:31 PM (GMT -7)   
Well done to you for taking action that will no doubt benefit others in the same situation.
Marty
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/pred/colofac


       
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EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 3/2/2008 11:07 AM (GMT -7)   
just wanted to give this a bump up
Erica
Crohn's and Ostomy in 2004


ally's law mom
Regular Member


Date Joined Feb 2008
Total Posts : 35
   Posted 3/3/2008 10:48 AM (GMT -7)   

RobynO,

Hopefully things will work out and you will be able to come to Springfield. We're setting up meetings with legislators so if you are going and you would like to meet your legislator, please let me know.

Thanks,

Lisa

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