Re: SMA Conference...Another view

[Guest guest]

I have only been to one and I don't think I will ever go again! I just

want to say, before I continue, if you " love " the FSMA Conference, you might

want to stop reading now.

My first FSMA conference was the one in 2002 in Washington DC. I had

several problems. First of all, the cost was extremely high for the hotel as

well

as food. I didn't attend any meetings but was charged for the conference.

Secondly, when we arrived we were informed that WE had to park our van off site

(4

blocks away)!!!! If my father had not attended, I don't know what we would

have done because I can not be left unattended, because I can choke at any

moment, without warning. Thirdly, the elevators were a nightmare! There weren't

enough of them and we had a terrible time finding which elevator went to the

street level (only 1) and only one went to the conference area. It was very easy

to get lost. Fourthly (no, I'm no where near done), the hotel had promised me

(and several other families) a refrigerator in my room. Apparently they didn't

have enough to go around. We were assured that the my formula and medication

would be safe in the hotel kitchen refrigerator, and although we were hesitant,

we left it. When my dad went to get my formula and medication later that

evening, the hotel manager stated that they had LOST it. After 2 hours of

searching, it was discovered in the FREEZER. They destroyed a $1000 worth of

medication and my formula for the next day. Luckily, our motto is " if it can

happen, it

will happen " so we were prepared with extra formula and our pharmacy FedEx'd

us more medication, for an additional charge.

I was also surprised by the lack of equality I experienced. When I

informed some people (I will refrain from " naming names " ) that I had type I SMA,

I

was either shunned, ignored, walked away from, or told " you have no quality

of life " . I was extremely saddened to find out that type does matter to a lot

of people who attend the FSMA Conference. Am I bitter? YES, I AM!!!! Sorry if I

have offended anyone I consider a friend (you know who you are) but I had to

show both sides of this so called " everything BUT pessimistic and depressing "

conference.

MJ

" I'll remember you, though. I remember everyone who leaves. " ~ Lilo & Stitch

I have been going to the FSMA Conferences since 2001, and I have found them

everything BUT pessimistic and depressing. I think it is the one place where

people, especially kids, with SMA feel completely " normal " and are the

majority.

It also gives those afflicted with SMA and/or their families a chance to meet

up with others, share their experiences, learn from one another, and develop

relationships that otherwise would never happen. I would recommend it anyone

who wishes to broaden their SMA community/family.

Amy M.

[Guest guest]

In a message dated 11/12/2004 11:17:16 PM Eastern Standard Time,

TWEETYROLL88@... writes:

My first FSMA conference was the one in 2002 in Washington DC.

Let me say that DC was a nightmare for most who attended. Quite honestly, the

hotel was nowhere near prepared for the crowd the conference gathered and,

especially, the number of people in wheelchairs who attended. Nevertheless, I

don't think all the blame should be put on the hotel; whoever coordinated the

conference should have checked the site out better beforehand.

>>the cost was extremely high for the hotel as well as food.<<

From what I have experienced, which is not an enormous amount, the nightly

room rate and the conference cost was fairly inexpensive compared to some. I

just spoke at a conference that was not even two full days, and the registration

fee was $675.00. On the other hand, the cost of food at any hotel is

ridiculous!

>>I was also surprised by the lack of equality I experienced. When I informed

some people (I will refrain from " naming names " ) that I had type I SMA, I was

either shunned, ignored, walked away from, or told " you have no quality of

life " . I was extremely saddened to find out that type does matter to a lot of

people who attend the FSMA Conference.<<

This surprises me, and yet it really doesn't anymore. I'm surprised by your

experience only because I, myself, am a Type 1 and never felt shunned or told I

have no quality of life. I can honestly say that I sometimes feel awkward,

especially when I spend time with Type 1 families, but that is my own doing not

because someone made me feel that way. I just tend to question " why me " when

some of the kids are so dependent on machines...and yet we have the same

diagnosis. Please, don't get me wrong...I love my kids, my husband, my life,

but,

yes, sometimes it sucks to see others going through so much and know that nobody

has the answers. I was diagnosed at three months of age, I never walked, I

never even sat on my own...according to my milestones I am a Type 1, and

bloodwork confirmed so this past summer. So why am I still going strong after 33

years, and have two beautiful little girls that I carried almost full-term? I

wish

I had the magic answers to share with others, but nobody has ever made me

feel rejected over my diagnosis and my still being around today, especially at

the conference.

Amy M.

[Guest guest]

Next year you ought to come to the SMA Support Family

Gathering instead! We had a great time here in Greenville, SC

and are hoping to make it an annual get-together. There are no

speakers or conference registration fees. Just show up and

hang out with other SMA families and, if you want to, attend

some of the scheduled events. Or not! It's all up to you. We had

a great time. There are some pics up on the SMA Support

website if you're interested.

http://www.smasupport.com/greenville04.htm

> I have only been to one and I don't think I will ever go again! I

just

> want to say, before I continue, if you " love " the FSMA

Conference, you might

> want to stop reading now.

>

> My first FSMA conference was the one in 2002 in

Washington DC. I had

> several problems. First of all, the cost was extremely high for

the hotel as well

> as food. I didn't attend any meetings but was charged for the

conference.

> Secondly, when we arrived we were informed that WE had to

park our van off site (4

> blocks away)!!!! If my father had not attended, I don't know what

we would

> have done because I can not be left unattended, because I can

choke at any

> moment, without warning. Thirdly, the elevators were a

nightmare! There weren't

> enough of them and we had a terrible time finding which

elevator went to the

> street level (only 1) and only one went to the conference area. It

was very easy

> to get lost. Fourthly (no, I'm no where near done), the hotel had

promised me

> (and several other families) a refrigerator in my room.

Apparently they didn't

> have enough to go around. We were assured that the my

formula and medication

> would be safe in the hotel kitchen refrigerator, and although we

were hesitant,

> we left it. When my dad went to get my formula and medication

later that

> evening, the hotel manager stated that they had LOST it. After 2

hours of

> searching, it was discovered in the FREEZER. They destroyed

a $1000 worth of

> medication and my formula for the next day. Luckily, our motto

is " if it can happen, it

> will happen " so we were prepared with extra formula and our

pharmacy FedEx'd

> us more medication, for an additional charge.

> I was also surprised by the lack of equality I experienced.

When I

> informed some people (I will refrain from " naming names " )

that I had type I SMA, I

> was either shunned, ignored, walked away from, or told " you

have no quality

> of life " . I was extremely saddened to find out that type does

matter to a lot

> of people who attend the FSMA Conference. Am I bitter? YES, I

AM!!!! Sorry if I

> have offended anyone I consider a friend (you know who you

are) but I had to

> show both sides of this so called " everything BUT pessimistic

and depressing "

> conference.

>

> MJ

> " I'll remember you, though. I remember everyone who leaves. "

~ Lilo & Stitch

>

> I have been going to the FSMA Conferences since 2001, and I

have found them

> everything BUT pessimistic and depressing. I think it is the

one place where

> people, especially kids, with SMA feel completely " normal " and

are the

> majority.

> It also gives those afflicted with SMA and/or their families a

chance to meet

> up with others, share their experiences, learn from one

another, and develop

> relationships that otherwise would never happen. I would

recommend it anyone

> who wishes to broaden their SMA community/family.

>

> Amy M.

>

>

>

[Guest guest]

> We attended the conference in Chicago (2002?) and it was our first

one. We had tried to attend before but couldn't because the hotel

hosting the event didn't have roll-in showers, which is what my

husband needs.

My experience with the Chicago conference was similar. My twice

confirmed reservation for a w/c accessible room with a roll-in

shower wasn't there when I tried to checked in. The manager claimed

that none of their rooms had roll-in showers, and no w/c accessible

rooms were available. I had to stay at another hotel and pay the

exorbitant valet parking rates twice a day to attend the

conference. While I was looking forward to the Adults with SMA

meeting, I ended up being the only one there, and no speaker even

showed up. I think a modern suburban conference center would be a

more appropriate venue, as I have shared with the organizers. It

continues to amaze me that about 50% of the time, those taking

reservations at hotels have no idea what a roll-in shower is!