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Anonymous
November 13, 2010 at 11:27 pm

Judi,
I sent you a private message.

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Anonymous
November 5, 2010 at 5:16 pm

Hi Forum members,

Wow again, what a first day here. There were some new topics and studies going on. Alot of funding from the foundation it seems.

so far we had Asbury, Gorson, Jacobs, Brown, Lewis, Willison(what a character) and Sheikh. did some good speaches.

Gorson came out with a new categorizing system with an impressive 11% cure rate for CIDP. Unfortuneately he is big on keep trimming back the drugs and wait for relapse. As at the last symposium, he is big on people getting ivig and not needing it. he is optimistic they may be in remission and is willing to let the patient relapse then retreat. In a perfect world that may be ok, but when you can’t see them for like 3-4 months that don’t work. Anyway

They filmed all the sessions that will be available online somehow, so everyone can watch it at some point.

Saw and talked with Liz and Cathy, saw Markens and chatted a few moments.
some familiar faces and alot of new ones as well. many first timers.–tim–

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Anonymous
October 13, 2010 at 2:22 am

I am registered. Is it really worth going though if it is a 12 hour drive??? The last time I flew, this cidp got worse. Having second thoughts- concerned I might be disappointed???

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Anonymous
October 6, 2010 at 12:04 pm

I had a problem with room too and I booked early! I will have a friend attending symposium with me and I told hotel I need accessible room with two beds. I have sleeping problems, will not and cannot share bed. I had to take accessible room with just a king bed and hotel will bring in roll away bed.

I wish our foundation provided recommendations for accessible transportation but they did not. I have to find and book accessible transportation. I am traveling alone to hotel (friend is meeting me there) and now I’m stressed about hotel room nd airport transportation. Tropiano, the shuttle recommended by our foundation is wheelchair accessible (did a google search), but I will have a problem trying to use my hands to get them to pick me up and the phone will probably be at a standing level.

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Anonymous
September 9, 2010 at 4:28 pm

My husband and I are going. We live in Maryland so it is not too far. Hope to see how other people manage to get along. See you there.

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Anonymous
September 9, 2010 at 9:35 am

Jim,
If you are able to make it this time, we’ll sit at the same table for state night dinner.

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Anonymous
September 8, 2010 at 6:34 pm

Hi Sharon,
No, I won’t be attending all the sessions. If you want to meet we’ll email or PM and decide how to do it. I hope you will check with your doctor to make sure it’s okay to attend.

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Anonymous
January 18, 2010 at 12:30 am

Pennsylvania? When will it be in Minneapolis? I guess I missed th boat when it was in Chicago… Why is it ALWAYS on the deer opening here in MN? That is the biggest day of the entire year for all of the men in my family. Oh well, we do have two meetings in the Twin Cities every year & I have made it to one in almost 8 years. Dr. Parry always speaks at the spring meeting & it was so good to see the man who saved my life. He autographed his book for me & I purposely wrote out a check to show him my handwriting; he had once told me I would never get the use of my hands back.

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Anonymous
January 14, 2010 at 1:35 pm

Every two years the Foundation hosts a very large symposium.
There may be smaller gatherings about the country in different sectors but
this one is the Big Daddy of meetings.

What occurs at this symposium is a large facility is selected that can handle alot of GBS/CIDP patients, family, caregivers, doctors, etc.
It turn out to be like 2-3 days of mini workshops, discussion of topics on the disease, current treatment regimes, what is currently being done to develop
new drugs as well as use of orphan drugs.

you can learn alot about the conditions involved, family issues, mental and physical adjustment and a whole wealth of information and stuff like that.

They select the top Neuromuscular doctors from the Big Hospitals. like
Hospital of the Univ of PA, Johns Hopkins, Mayo and all over the country and
even other countries. these doctors speak periodically throughout the day on scheduled times and you can sign up and go from topic to topic. whatever interests you.
Last symposium was in Chicago at a beautiful hotel resort. they offer discounted room rates and lots of help for the disabled. My wife and I went and enjoyed the experience very much. She learned alot and understand more than if she never went.

I highly recommend it if the condition is new to you. It is also good for well versed people, Some very good questions are brought up and you get live feedback in some open forum situations.
There will be alot of talk about it once it gets nearer.–tim–

OH also if you do a search on this site, alot of folks posted pictures so you may be able to see what the last one looks like.
There were alot of topic threads started from after it as well.

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Anonymous
November 12, 2008 at 2:40 pm

That’s Stacey (ConnorsMom) in blue sweater, Marjie (hope that is marjie) and Dawn (KeviesMom). Don’t know how to resize from photobucket yet.

[IMG]http://i143.photobucket.com/albums/r134/maybowe/family.jpg[/IMG]

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Anonymous
November 11, 2008 at 6:54 pm

I Got My Pictures Uploaded And Resized And I Should Be Able To Start Posting Them Tomorrow. Some Of My Photo’s Didn’t Come Out Good At All, Like Stormy Said, Due To The Lighting, So Those I Deleted.

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Anonymous
November 10, 2008 at 12:12 pm

Hi Family,
I will come back and give some comments, probably tomorrow, but when I’m tired my hands don’t work well, and they’re not good right now. I got home last night.

I’m going to clear with our foundation to make sure it’s okay to post photo’s.

I wish I could remember better what was said, but I’m a senior citizen and it takes alot of concentration to function when dealing with chronic syndrome.

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Anonymous
November 9, 2008 at 4:37 pm

It was nice to make the connection and meet many of those we see here on the forum and within the Foundation. We were very happy to meet Everyone we could, and experience in mass numbers the available support.

My wife Debbie even got a great photo of herself with a studly young neurologist. He hugged her and made her moment. Hopefully not her whole day. LOL.

I highly recommend attending future gatherings like this. It was nice to meet you Dawn and all the other members.
tim

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Anonymous
November 5, 2008 at 3:01 pm

Hi Family,
I’m all packed and ready to go tomorrow morning, but I don’t think I’ll EVER learn how to control my packing. I’ve packed like I’ll be gone for two weeks, GOOD GRIEF, how much would I pack if I’m going away for a month!! Anyone else like me?

[IMG]http://img360.imageshack.us/img360/763/laughxk6.gif[/IMG]

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Anonymous
October 29, 2008 at 11:28 pm

Stacey,
If you do decide to play it safe and use a wheelchair at the airport, YOU DO HAVE TO CALL THE AIRLINE YOU ARE TAKING. They also give you someone who will push the wheelchair. But, a big airport will probably have the shuttles, like big passenger golf carts to get you to ground transportation. THAT”S WHAT YOU LOOK AT THE SIGNS FOR WHEN YOU GET OFF PLANE, GROUND TRANSPORTATION.

I have flown about five times since I’ve needed a wheelchair and wheelchair people ALWAYS get off last.

AM I THE ONLY ONE COMING INTO MIDWAY??

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Anonymous
October 29, 2008 at 10:31 am

Height Won’t Matter For Me Because I’ll Be Sitting In A Wheelchair. Except For More Gray Hair That Now Shows Through The Brown, I Look Like My Avatar. And I’m A “large :)” Woman. I Can Be Very Shy, Introverted And Inhibited, So If I Just Sit Without Saying Anything, Please Pull A Conversation Out Of Me.

Some Things Are Going To Be Difficult For Me, So If Anyone Can Help, I’d Be Grateful. I’m A Breakfast Person And I Know I’ll Need Help Carrying A Tray To A Table.

I Would Go On The Walk-a-thon, But I’d Need Someone Who Could Push Me.

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Anonymous
October 27, 2008 at 7:32 pm

Hi Family,
I Only Realized A Few Days Ago That We Have Two Hour LUNCH BREAKS In-between Workshops, So That Is The Best Time To Get Our Forum Family Together And When We’re All There, We’ll Know How To Find Each Other.

I Know That At The Phoenix Symposium Two Years Ago, We Were Given Ribbons With Our Given Name On It, So Try To Make Yourself A Big Name Tag With Your User Name On It That You Can Also Wear. That’s The Best Way To Spot Each Other. I Look Pretty Much Like My Avatar, More Gray Hairs Though Show Now.

My Final Decision Is To Meet During Lunch Breaks.

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Anonymous
October 23, 2008 at 11:40 am

Thanks For The Input Trey! We Do Want To Get Our Forum Family Together And The Best Way Would Be During One Of The Lunches In-between The Workshops. I Think State Night Dinner Should Remain As It Is And We Sit With Our State, This Enables Us To Connect With People Who Might Live Very Near You, Good For Them, Good For Us.

It Sounded Like You Said One Of Our Lunches Is Set Up For Forum Members, That’s When We Should Meet.

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Anonymous
October 15, 2008 at 9:58 am

Hi Stacey,
I am definately going. I will be arriving on the 6th, late in the afternoon and coming into MIDWAY airport. I googled in info on airport transportation for O’Hare and Midway and I will be using GO AIRPORT EXPRESS accessible transportation since I am traveling alone and in a wheelchair. That cost $45.00 one way.

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Anonymous
October 11, 2008 at 2:15 pm

Thanks Dawn,
I should probably just go by what November is like in New York, we would get Indian Summer weather and you’d want to put short sleeves on. Isn’t it typical of a woman wondering what to wear!!! The only “just in case” I’ll take is a mid. weight jacket, no parka.

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Anonymous
September 5, 2008 at 10:42 am

I’ll be arriving at Chicago’s midway airport around 2:00pm on Friday the 6th. I’m going to try to make a reservation for a wheelchair accessible van, either what they call the airport express or a taxie service that uses accessible vans. Anyone else getting into midway in the afternoon? I’ll be on Southwest.

Sherry, you’ll get to resort before I do.

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Anonymous
August 30, 2008 at 1:41 pm

I’m Going, I’m Going, I’m Going!

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Anonymous
August 29, 2008 at 11:43 am

I Give Up Trying To Put Things Together So I Could Re-consider Going To The Symposium! I Called Indian Lakes Resort Again And They Couldn’t Find Anything About Our Symposium. They Asked Several Times What Our Group Is Called. I Gave Them All Sorts Of Names, Like Guillain Barre Foundation, Gbsfi, Gbs-cidp, Etc. I Know I Called The Right Number Because Today Was The Second Time I Used The Same Number And They Knew Of Our Foundation On The First Call.

I’m Just Getting Too Overwhelmed And Frustrated.

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Anonymous
August 27, 2008 at 3:32 pm

I was hoping that I’d feel okay about going, but I have to make the decision not to go for financial reasons. I’ve had to buy so many things for my new home and there are still more things I need to buy.

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Anonymous
August 26, 2008 at 9:46 pm

[QUOTE=Dawn Kevies mom]The hotel is about a 40-50 minute ride from ord or mdw, Chicago itself, meaning museums and downtown, or where Obama lives if you are a fan, is about the same distance. Provided it is not in rush hour traffic. If you are not that mobile and plan to stay at the resort the whole time, you may want to consider a taxi ride. I am guessing $40- $50, each way. Ord is a long walk to baggage, but the flight schedules are easier. MDW is much smaller, easier to walk, but may not offer the flights you are looking for. We do both, for walking, and ease of getting baggage we prefer mdw. The town the resort is in is a nice suburb with suburbia type things to do, TGI Friday type rest., strip mall type shopping and a larger mall a bit aways. So if you were interested intouring Chicago itself, you may want to consider a rental. I have no exp. with rental info as we take a limo from home. That too could be an option if a few of you guys hooked up. Don’t forget to watch the weather report right before you leave or pm me, as it could be hot and sunny in the early part of Nov. or rainy or snowing!!!!!! You never know!!!!!
If you do rent a car, Yes, we do have tons of tolls to pay to use our crudy roads. If you live here, we have an i-pass to purchase. If you are out of state or choose not to purchase one, you get ripped off. The money line is long, if you have change it is a little shorter that the line to make change. You won’t have to take a loan out, depending on which airport you take, it should be no more that $3.00 from the airport to hotel. Don’t quote me, I will try to make note of it next time
I travel that route.
Dawn Kevies mom[/QUOTE]

I’ve got my fingers crossed that you attend Dawn as you are our in house expert, and I really respect what you pass on to us.
Laurel

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Anonymous
August 13, 2008 at 3:51 pm

So what types of events occur at the symposium? Is it mostly lectures on treatment, diagnosis and research etc?

I havn’t received any information from the foundation on this as oflately but Estelle was mailing it to me today.

It sound like an intersting event, I may fly out there once I know what its all about.

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Anonymous
August 12, 2008 at 4:03 pm

GBSFI stated in the second reply to this post that BROCHURES will be mailed out in late summer, which means that we should start getting them the end of this month or maybe into mid September. When it gets near the end of the month keep checking the main web page at [url]www.gbsfi.org[/url]

BE PATIENT IN WAITING. They reserve blocks of rooms and they know how much time we need to make our arrangements.

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Anonymous
June 16, 2008 at 11:32 am

Hi Stacey,
The best thing to do is to call the foundation. I don’t see why children wouldn’t be welcome, but you’d have to bring things to help with the boredom.

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Anonymous
June 14, 2008 at 3:23 pm

Hey Jim,
What airport will you be flying out of? If you can go to Orlando, we can hook up and go together ๐Ÿ™‚

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Anonymous
June 14, 2008 at 3:20 pm

You Can Make Plane Reservations Now, But Remember To Wait Until You Receive The Information For The Symposium In August, Before You Make Your Hotel Reservation. If You Reserve A Room Now, You Won’t Get The Discount Room Rate.

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Anonymous
June 14, 2008 at 10:39 am

Hi family,
I am hoping that I will be able to go, it will have to depend on how much I’ve gotten done with my move. I am moving in July and I may still be up to my ears with packed boxes waiting to be unpacked.

I remember from the last symposium that the foundation gives us a name tag, but it is a good idea to make a big tag with your forum name on it. And we’ll have to get everybody from the forum together on a free night and go out for supper.

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Anonymous
May 6, 2008 at 11:30 pm

Hello,
I’m pretty sure I remember reading that the foundation will be mailing out the information three months prior, which would be August. In order to receive the information make sure you are registered with the foundation itself and not just the forum. If you receive the newsletter/brochure called the “communicator” you’re registered. If you receive no mailings from our foundation at home, you’re not. Just go to our main page www,gbs-cidp.org each month and watch for updates.

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Anonymous
May 6, 2008 at 10:26 pm

No, I def havent gotten anything either. Other then the dates and stuff. Umm yea if anyone knows something. Mail me too lol. Hotel and event info. please. PS. HI JESS>>>>>CASINO SOON

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Anonymous
April 24, 2008 at 3:41 pm

Hello Suzanne,
The symposiums are safe to go to alone, I know ๐Ÿ™‚ I am in a wheelchair and I traveled to my first one two years ago from New York to Phoenix. I was okay alone because the airport provides someone to help you and the foundation will tell you how to arrange transportation from airport to hotel.

When I was at the Phoenix symposium we posted on forum about getting our forum group together to go out for lunch. How wonderful it is to meet everyone.

You have a chance to speak to the doctors on the panel so you can have your personal concerns answered.

I’ll do better with my second symposium because I’ve learned how to handle myself better.

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Anonymous
January 13, 2008 at 12:34 am

We will be getting information about the symposium; which is actually a meeting where we can learn from doctors, physical therapists and ourselves; about GBS and CIDP. It’s great to go to at least once and it’s a wonderful experience to meet our family. How many times have you thought I wish I could meet you or someone like me, this is the way. I am hoping that I will be able to go. I am going to plan on it. When you receive your information from the foundation, it should also include accessible shuttle transportation for those of us in wheelchairs.

MAKE SURE THAT YOU HAVE REGISTERED WITH THE FOUNDATION ITSELF AND NOT JUST OUR FORUM. IF YOU GET OUR NEWSLETTER PAPER THE “COMMUNICATOR” YOU ARE REGISTERED, IF YOU ASK WHAT’S THAT YOU ARE NOT REGISTERED. PLEASE GO TO THE FOUNDATIONS MAIN PAGE AT [url]www.gbs-cidp.org[/url] AND REGISTER THERE. THE FOUNDATIONS MAIN PAGE SHOULD ALSO SHOW INFO ON SYMPOSIUM.

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Anonymous
October 30, 2007 at 12:07 am

If the symposium is going to be in Chicago, it should be doable for me to get there. But PLEASE don’t make it the same weekend as deer hunting opener in MN, as was the last one in Phoenix! That is a bigger holiday to my husband, sons, & son-in-law then Christmas. How much I hate that 40 acres & deer shack we own!
J/K it would be so great to get there & actually meet some of you in person!
Pam

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Anonymous
October 29, 2007 at 12:23 pm

Hello Stacey,
Since the symposium is in November 2008, I don’t think there will be any details on it until about August 2008. If you joined the foundation and not just our forum, details will be mailed to you. When summer comes, you can click on our main foundation page gbs-cidp.org (don’t use /forums) to start watching for details.

I went to my first symposium in Phoenix last year. What’s so wonderful about the symposiums is that you get to meet people face to face, friends who feel what you feel. You’ll meet those of us from the forums who are able to go. I am going to try.

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Anonymous
November 26, 2006 at 11:54 pm

We were told to submit questions to the the panel of doctors on “ask the experts” meeting and I remember that at the end of this meeting an announcement was made that transcripts would be available. I don’t really know about tapes, but I know I did see video cameras. I’ve been presuming that when the next issue of “The Communicator” comes out this will carry information on what’s available. You can also call the foundation and ask them.

If you want to receive this issue of “The Communicator”, make sure you are registered with the foundation and not just our discussion board.

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Anonymous
November 19, 2006 at 7:41 pm

Liz,
Thanks so much for posting the pics, I know what an effort it must be for you. How much I wanted to go to this Symposium, but with opening of deer season being that weekend (here in MN it is like a national holdiday,) it just wasn’t going to happen. But if it does end up being in the Midwest two years from now, I will definitely be there. How nice it would be to meet so many of you, & just to get to know people who truly understand what we go through on a daily basis.

I did go to the Mall & shopped Herbergers sale for 3 hours on Friday & have paid dearly for it all weekend. Fortunately I have been introduced to E-Bay, LOL, & have oredered a lot from there this year. And of course there is always Amazon & Overtock, so I have been shopping lots! I agree about the mall & the crowds, everyone be careful & don’t overdo it. If only I would just take my own advice!

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Anonymous
November 19, 2006 at 3:15 pm

I just thought I’d add that there were 17 doctors/therapist’s,etc. on the panel. And I think I remember hearing that there were 400 of us that attended the symposium.
I will try to go to the next symposium and since Phoenix was my first one, I’ve learned how to do better so that I will be able to share more.

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Anonymous
November 17, 2006 at 11:31 am

THE REST OF THE DOCTOR’S. These are all I have to post.
[IMG]http://img454.imageshack.us/img454/8317/phoenixdoctors2ml5.jpg[/IMG]

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Anonymous
November 17, 2006 at 11:22 am

HERE ARE THE DOCTOR’S FROM “ASK THE EXPERTS” I will try to come back and name them.

[IMG]http://img329.imageshack.us/img329/9828/phoenixdoctors1kk4.jpg[/IMG]

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Anonymous
November 17, 2006 at 11:17 am

me and JERIMY, from our forum. Hope you don’t mind Jer, but it’s nice to put a face to a name.

[IMG]http://img184.imageshack.us/img184/3721/phoenixjerimyue8.jpg[/IMG]

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Anonymous
November 17, 2006 at 11:12 am

me and KASSANDRA, from our forum. At State Night Dinner
[IMG]http://img218.imageshack.us/img218/3663/phoenixkassuu0.jpg[/IMG]

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Anonymous
November 17, 2006 at 11:07 am

GOLF COURSE DRIVING RANGE
[IMG]http://img465.imageshack.us/img465/5107/phoenixrangerj4.jpg[/IMG]

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Anonymous
November 17, 2006 at 11:01 am

EMBASSY SUITES, PHOENIX/SCOTTSDALE, golf course in back of hotel.
[IMG]http://img85.imageshack.us/img85/7558/phoenixgolfio2.jpg[/IMG]

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Anonymous
November 10, 2006 at 10:45 am

Hi again,
My hands just cannot hold the shape of a digital camera, they were damaged by CIDP, so I gave my camera to someone to take pictures for me. I ended up not having any pictures to post. I will not fault the person at all, using an unfamiliar camera, dealing with her/his own fatigue and medical problems, trying to benefit from meeting people at the symposium, etc.

I know how to post the pictures (I hope), a photo is a photo and I’ve done so before. I will try to contact Peggy80 and CIDPkid and if they will send me some of their photo’s (I will send back), you’ll see pictures.

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Anonymous
November 8, 2006 at 2:54 pm

Hello,
I just want to explain my comments a little more to try to clarify things. I hope our administrators will not feel it’s necessary to remove this. First off, all the doctor’s on “ask the experts” who spoke up, did say that we should get the flu shot and that it was safe for us. When someone asked about the warnings we are given that the flu shot should not be given to people with our syndromes, Dr. Lasik spoke up and commented that his son worked for a pharmacy company and that they are the ones who are giving out the warnings, not the doctors. I think he meant it lightly, as a joke.

BOTTOM LINE THOUGH, the doctors did say it was safe. I think one of our forum members who attended was recording. I will contact her and ask her exactly what was said.

THE FLU SHOT HAS TO BE AN INDIVIDUAL CHOICE after you receive advice from your neurologist and family doctor.

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Anonymous
November 7, 2006 at 4:17 pm

I could not believe it either that all of the doctors on the panel of experts who spoke up recommended that both GBS and CIDP patients can safely get the flu shot. Dr. Lisak stated that the warnings we read and hear about are from pharmacy companies who want to avoid lawsuits.

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Anonymous
November 6, 2006 at 8:53 pm

Hi Everyone,
I just got back this evening and am really tired. I can handle traveling by myself now, all I have to do is ask people to help me, they are so willing.

Have to go to bed soon, will try to post photo’s soon. If you don’t like them, blame Jerimy, he was my camera man.

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Anonymous
November 1, 2006 at 8:01 pm

I’m all packed and ready to leave in the morning, typical woman packing, I think I have a lavender pig to tote. I’ll arrive at Embassy Suites late in afternoon on 2nd.

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Anonymous
November 1, 2006 at 12:57 pm

Saturday is okay with me. We’ll put it together when wse’re all at Embassy Suites. Don’t expect me to do it though, I’m a FOLLOWER, not a drop of LEADER in me.

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Anonymous
October 30, 2006 at 8:53 am

Hello,
This is one that rules my life FRUSTRATION, “I can’t do this until I can do that and I can’t do that unless I can do this”. We need helpful suggestions on dealing with our frustrations.

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Anonymous
October 29, 2006 at 5:26 pm

I’m up for all of us getting together some night, except can’t do it Fri night. Got a date with my granddaughter to go to ASU and have dinner with her.

How about Thursday?

Peggy

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Anonymous
October 29, 2006 at 10:01 am

The symposium is getting closer now. This is the first one that I have been well enough to go to. And the fact that I am going to travel alone is a HUGE step of INDEPENDENCE for me. I think I can take more bricks out of my “BRICK WALL’. This venture will open up some more doors for me too. Maybe I can be HOPE for people.

All of us from the forum should try to get together for one night, sit down at a table and have dinner together, that would be a good memory to take home.

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Anonymous
October 28, 2006 at 12:18 pm

WOO WOW, I’ve got a dinner date with Stephen, now I just have to find him at the hotel. I’m wearing a big sign around my neck that says “I’m Codystanley”.
[IMG]http://d21c.com/walpurgis9/happies/faces2/092.gif[/IMG]

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Anonymous
October 25, 2006 at 11:47 pm

WOW,
Stephen, with all those attributes being thrown at you, I’LL GO TO DINNER WITH YOU ๐Ÿ˜‰ that is, if you don’t mind going with an old lady of 65:cool: I’m young at heart and ready for a fun time.

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Anonymous
October 25, 2006 at 4:31 pm

Hello Doby,
This is the first one that I’ve been to and they do have them every year, I’m not sure if it’s always November. If you are a member of the foundation and not just the forums, you’ll receive the newsletter (probably Dec.) which will tell you all about it. I think usually they are always held in hotels, so it would just be in meeting rooms. The symposiums are held different places each year, different states, I don’t know if they are held international too.

Maybe someone else will post who has been to different symposiums. I’m sure we’ll be posting about what it was like. I’m hoping I can get photos to post here to share.
Liz

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Anonymous
October 23, 2006 at 12:21 pm

THIS IS MY NEW PRIDE GO CHAIR. IT WILL BE DELIVERED TOMORROW. IF I CAN LEARN HOW TO DRIVE IT SAFELY, PHOENIX, HERE I COME. YEAHHHHHHH

[IMG]http://im2g91.imageshack.us/img291/4759/gochairly8.jpg[/IMG]

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Anonymous
October 16, 2006 at 5:43 pm

Hello,
I am going to the symposium and traveling from New York. This is the first symposium that I have gone to, so I can’t tell you what to expect, other then meeting other’s with GBS/CIDP in person. I do know that we will have really great speakers. Dr. Gareth Parry, from what I’ve heard, is one of the best GBS/CIDP doctors in the USA. Also, I think Dr. Kenneth? Gorson is another of the top 5 neurologists in the USA. If you need “hope”, listen to Dr. Gorson.

I am going to wear a name tag that identifies me as CODYSTANLEY

If you are just finding out about the symposium, you can go to our home page at [url]www.gbs-cidp.org[/url]

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Anonymous
August 19, 2006 at 8:07 am

Hello Brad,
I’m going to the symposium in Phoenix. I live on Long Island in New York, east of NYC, about a one and a half to two hour drive.

I’d say “lets travel together”, but I am leaving from an airport on Long Island, near where I live. You’d probably leave from JFK airport in city.

Try emailing PEGGY80, another member. She is closer to the city then I am and most likely leaving from JFK.

That’ll be three New Yorkers so far.

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Anonymous
August 12, 2006 at 10:31 am

Hello Peggy,
I am going to the symposium and I too will be traveling in a wheelchair. I did not as yet ask what the shower and bathroom were like, but have learned from experience that when we are told a bathroom is wheelchair accessible, IT DOES NOT “ALWAYS” MEET OUR NEEDS. Take a walker with you and a rubber bath mat, those will help. If your wheelchair can go in shower, that will help too.

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Anonymous
June 22, 2006 at 12:28 pm

Hi,
Brandy and Marge, I’ve wondered about that myself, have they ever had a symposium in New York City???

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Anonymous
June 15, 2006 at 7:52 pm

Hello,
Thank you Barbara for responding to my post. I was only quoting what Embassy Suites 1-800 reservation operator told me. I called Embassy Suites, Phoenix (Scottsdale) direct and spoke to the reservation desk and THEY DO HAVE SEVERAL WHEELCHAIR ROOMS STILL AVAILABLE. If you are told that none are available, QUESTION IT, OR CALL OUR FOUNDATION.

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Anonymous
May 20, 2006 at 9:12 am

Hi,
I’ve decided to wait for detailed mailing that the foundation will send us. If I made flight reservations now, I wouldn’t know LEAVE and DEPART times so that I’d arrive at embassy before first meeting and leave after last meeting. We already know foundation will have rooms blocked off, so that’s not a concern.

VIKKI, so good to see you here. I was worried about you.