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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> News >> Mastocytosis Society meeting in October http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1312903625 Message started by MastoGem on 08/09/11 at 04:27:05

Title: Mastocytosis Society meeting in October
Post by MastoGem on 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.

Title: Re: Mastocytosis Society meeting in October
Post by Starflower on 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

Title: Re: Mastocytosis Society meeting in October
Post by Lisa on 08/09/11 at 12:07:12

I'd really like to go! A bit too far from Brazil though! :(

Maybe Spain...! :)

Lisa

Title: Re: Mastocytosis Society meeting in October
Post by kimtg68 on 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

Title: Re: Mastocytosis Society meeting in October
Post by SpottedFoxx on 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.

Title: Re: Mastocytosis Society meeting in October
Post by MastoGem on 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

Title: Re: Mastocytosis Society meeting in October
Post by nevermiss on 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.

Title: Re: Mastocytosis Society meeting in October
Post by Stacy on 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 :)

Title: Re: Mastocytosis Society meeting in October
Post by DeborahW, Founder on 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!

Title: Re: Mastocytosis Society meeting in October
Post by goldielove on 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.

Title: Re: Mastocytosis Society meeting in October
Post by Ardyth on 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.

Title: Re: Mastocytosis Society meeting in October
Post by DeborahW, Founder on 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. :)

Title: Re: Mastocytosis Society meeting in October
Post by Riverwn on 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