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Poll Poll
Question: Is anyone going to the October Mastocytosis Society meeting in Boston?

Yes, I'm definitely going.    
  4 (20.0%)
I'm not sure. I haven't decided yet.    
  5 (25.0%)
No, I'm not going because it's so expensive.    
  5 (25.0%)
No, I'm not going because I think it won't be worth it.    
  0 (0.0%)
No, I'm not going for other reasons.    
  6 (30.0%)




Total votes: 20
« Created by: MastoGem on: 08/09/11 at 04:27:05 »

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Mastocytosis Society meeting in October (Read 8141 times)
MastoGem
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Mastocytosis Society meeting in October
08/09/11 at 04:27:05
 
I'm trying to decide if I should go to this meeting.  I'd love to hear who is going.  Maybe we can even share some expenses like cabs from the airport or even a room.  Please contact me to discuss it.
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"People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within." — EKR
 
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Starflower
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Re: Mastocytosis Society meeting in October
Reply #1 - 08/09/11 at 06:53:13
 
I wanted to go, but summer vacation was more expensive (and fun) than I anticipated.  Oh well!  At least I had appointments with Dr. Castells and Dr. Greenberger in June.

Heather
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Lisa
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Re: Mastocytosis Society meeting in October
Reply #2 - 08/09/11 at 12:07:12
 
I'd really like to go!  A bit too far from Brazil though!  Sad

Maybe Spain...! Smiley



Lisa
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kimtg68
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Re: Mastocytosis Society meeting in October
Reply #3 - 08/09/11 at 14:36:22
 
I will be traveling to South Carolina for my first appt with Dr Afrin! Sorry, I won't be attending.

Kim
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SpottedFoxx
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Re: Mastocytosis Society meeting in October
Reply #4 - 08/10/11 at 02:26:36
 
I went to the one in NJ a few years back and it was absolutely amazing.  I highly recommend going if you can afford it.
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MastoGem
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Re: Mastocytosis Society meeting in October
Reply #5 - 08/10/11 at 03:39:11
 
Thanks for the responses.

And thank you SpottedFoxx - that really helps to hear that you've been to one and found it so worthwhile.   No, I'm not sure I can afford it, but honestly it would be amazing to get to hear from doctors and other patients.  I'd be so happy to meet other people like me.  I think I'd get kicked out for running around and hugging everyone. lol
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"People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within." — EKR
 
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nevermiss
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Re: Mastocytosis Society meeting in October
Reply #6 - 08/10/11 at 11:28:03
 
The agenda for the meeting is excellent.  All of the top docs will be there. In addition there is a walkathon to raise money for the newly created Center of Excellence for Mast Cell disorders and Brigham and Women's, chaired by Akin and Castells.  If you cannot attend you can get the info after the conference.  Also,
if you cannot attend, why not organize a walkathon in your home town to raise research money for Mast Cell disorders.
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Stacy
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Re: Mastocytosis Society meeting in October
Reply #7 - 08/10/11 at 14:48:34
 
I was planning on going, but hubby said "why don't we go to disney for your birthday"  Don't have to ask me twice.  Conference happens to be over my birthday.  Hopefully it'll be back in Boston in a few years  Smiley
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DeborahW, Founder
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Re: Mastocytosis Society meeting in October
Reply #8 - 08/10/11 at 16:12:44
 
Stacy,

I don't know if you have seen my posts regarding Disney, but it is truly the best and safest vacation that we mast cell people can go on! DO you get a guest assistance pass? If not, make sure you go to Guest Services at any park and explain that you would like to get a guest assistance pass (up to 6 people in your party) because you have a rare disease (tell them which one), which is triggered by many things including heat and fatigue. By getting a pass that allows you the alternate entrance (that is important to make sure the pass says that), you honestly will cut down on your fatigue and you will prevent symptoms from creeping up on you.

We go to Disney nearly every year and I always get this. Disney is all about making sure that everyone, including us sickies, have the time of our lives. They are also great at creating dishes for you to eat in the restaurants once they find out you have "alllergies". (So much easier to tell the restaurant chef allergies rather than attempt to tell the whole dran out story.)

Hope this helps you have a terrific time in Disney!
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goldielove
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Re: Mastocytosis Society meeting in October
Reply #9 - 08/16/11 at 12:22:55
 
I might be going my daughter lives in Boston and can put my up in her apt LOL she is in law school there I wonder if I could go last minute or if I have too sign up way in advance??? I hate to sign up then be too sick too travel as it is I can't travel or do much now.
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Ardyth
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Re: Mastocytosis Society meeting in October
Reply #10 - 09/07/11 at 07:13:05
 
I am thinking of going to the meeting. But like you, I need help with expenses by sharing room and cabs and such. This is my first time posting and I'm not sure how to let you know I am interested.
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DeborahW, Founder
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Re: Mastocytosis Society meeting in October
Reply #11 - 09/07/11 at 08:15:08
 
You can reach anyone on the forum privately by clicking on their name and then choosing the option to send a message.  Smiley
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Riverwn
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Re: Mastocytosis Society meeting in October
Reply #12 - 09/09/11 at 08:31:17
 
I cant go because I am too ill to travel far at this point.. I do want all of you to know though, that if your reason for not going is financial, I know that TMS has some scholarships and will pay for people who cant afford it any other way--they offered it to me, so graciously... Just wanted you all to be aware.
hugs
Ramona
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~~~Count  Your Blessings!~~~
 
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