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"A couple of
years ago my good friend Bernie asked me if I would be the compere at his
wedding reception. It was a Buddhist wedding (Bernie being Jewish converted to
Bhuddist and his new wife Hiromi being Buddhist). The wedding reception was a
four-hour riverboat cruise up the Thames, 80 guests, two live bands. There was
a moment, when I was instructing the guests to form a conga line behind the
11-piece conga band when I thought to myself 'this is probably the most surreal
moment of my entire life'. Well, standing here in front of all of you and Iain
Lee, I can see we've topped that today.
"Thank you all so much for
"MS conspires to keep people
apart and to stop those of us affected by this stupid condition from enjoying
ourselves. Well, tonight MS is nothing, MS is beaten. So good for you.
"Every one of you here
tonight represents a hundred other Jooly's Joint members who dearly wanted to
be here but couldn't be, either because of ill health or distance. Many of
those people will be thinking of us tonight and thanking you for making the
trip that they could not. Your stories and memories of tonight will give them a
lot of joy.
"I am extremely fortune to
have the love and support of so many people here tonight. And I appreciate your
kind words more than you can know. But I have to tell you that I am not in any
way more special than you. For me, Jooly's Joint is not a sacrifice. I'm
compelled to do it. I don't know how not to do it. I never planned it, it just
happened. JJ gives me a lot of pleasure, and knowing that it has helped even
one person in some small way is a huge blessing to me, and one I did not expect
when I started JJ ten years ago.
"I'm absolutely thrilled
that several very key members of the Jooly's Joint community are with us
"Terl Bryant, Divvy who
looks after JJUK for me when I'm not around (and that's more often than you
might think), and Sandie. Sandie, our wheelchair-riding wild woman who embodies
the spirit of Jooly's Joint far more effectively than I ever could. A lady
whose love and compassion has touched so many people through her diary on the
JJ website. Sandy is blessed with more modesty than me but I hope she knows
just how much she is loved by people she will probably never meet. As well as
having MS, Sandy has recovered from a brain tumour and if you knew what it took
to get her here this evening you'd be even more in awe of this wonderful lady.
"Sadly, our scooter-riding
Wildman Glyn Williams can't be with us tonight. Glyn is 75 now. As well as MS
he's undergoing treatment for prostate cancer. But these things are nothing
much to Glyn, whose charm and energy belie his years and his poor health.
Unfortunately, Glyn's doctors would not permit him to travel to be with us
tonight, but he knows we're thinking of him. Knowing Glyn, he's probably
digging a tunnel under his hospital bed as we speak and were he to suddenly
burst through the doors in a Sherman tank, it wouldn't surprise me.
"And I'm delighted that the
Reverend Tony and his wife Lynne aka Sixfootblond are here tonight. Tony and
Lynne met through Jooly's Joint and now they're married. I've counted at least
a 20 marriages between JJ members since we began.
"And a few years back one
member who lives on a farm even named a cow after me, sure there can be no
greater honour than that.
"And talking of farms,
welcome to Kate aka Egg as she is married to a farmer and lives on a farm. Kate
has accompanied me on many of our protests for access to beta interferon for
people with MS and is largely responsible for the campaign's success.
"Welcome to you from all
over the UK.
"Tonight we also
have guests from the USA, Canada, France, Sweden, Switzerland and Australia. A
particularly warm welcome to all of you, especially Lollipop AKA Loris from
Australia and Brian also known as Jaydee to any of you that use the JJ
chatroom. Brian really is the soul of JJ in the USA, and has organised many
meetings of JJ members in Michigan and beyond, selflessly and with patience and
gentleness and wholeheartedly in the spirit of Jooly's Joint. We're so
delighted to meet you, Brian.
"The press and the rest of
the non-MS world marvel at Jooly's Joint. We are spreadeagle over the press
"I'm often asked where I get
the energy to run Jooly's Joint for 20 hours a week on top of my fulltime job
at RNIB. Well the answer to that is my friends. I am so lucky to count as my
closest friends Anne-Marie Alonso, Bernie Goldman (still talking to me despite
my drunken and inappropriate behaviour at his wedding) and Jon Reed. Jon and I
have been friends since school, so if you want to know anything sordid about
me, he is the man to ask although he is extremely discreet. Bernie and two
other friends that aren't here tonight Tony Hudson and Karen Sainsbury have
helped me to organise many JJ events in the past. They don't have MS, they're
just fantastic, kind, talented, brilliant people and we owe them a huge debt of
thanks for their support.
"You may also be interested
to meet members of my family. My mum and dad are here as is my brother Calum.
"And there are other people
to thank. Iain who is a complete hero who actually took a day off work to
present our party. Even more amazing when you realise that a day off work for
Iain means getting someone else to present his live radio show on LBC 97.3.
This is not the first time that Iain has helped us out in a big way. I hoped
for so long that he would be persuaded to come to the party and when he told me
he could it's no exaggeration to say it made my year. And he's totally lovely.
And Iain's mum is here too. Like so many of us, she also lives with MS and I'm
delighted that she's here to hear how much her son has done to help people with
MS. I'm sure she's very proud.
"Huge thanks must also go
to Chris Bray of the MS Society. I've worked in the voluntary sector for a long
time and let me tell you that Chris is an absolute diamond. If it weren't for
Chris there would be no party. He keep things going when my spirits were low,
and his can-do approach to my wild ideas made planning tonight a complete joy.
Thank you so much Chris, from all of us.
"Thanks too to the Hilton
Metropole for donating these rooms and bottles of wine for our quiz and to
Becky Jenkins for donating our cake which looks absolutely terrific.
"I get so many emails every
day from people that use Jooly's Joint who feel that belonging to our community
has made life a bit better. I read and respond to every email I receive
(eventually!). Of the thousands of messages that I've received since JJ began,
one in particular sticks in my mind from a lady who was going through the
process of being diagnosed with MS who lives in America. She said 'Even if my
diagnosis turns out negative, it would be hard to leave this site. What a bunch
of loving, supporting individuals.' I can think of no better tribute to you,
the members of Jooly's Joint. You make me proud to know you every day. MS is
not a source of joy, but friendship is. I'd rather not have MS, but thanks to
all of you I don't regret my life. Thank you."
from JJ members!
Just brilliant! We housed Jaydee
and Mary and are just showing Peanut and Lorri around the West Midlands and
Wales. Although we've been based at home, it's the very, very best vacation
we've ever had! By the way... great talking voice you have... how's the singing
lessons going? (sorry!) Love and very best wishes, M. xx
Congrats on the 10th year of this
wonderful site. We want to thank you for bringing so many together from around
the world that share a common thread. It was well worth the 4000 mile trip to
join you and the others for such a festive party. All the best from J.D. and
I got the opportunity to meet so
many people I have spoken to but never met. I probably would never have had the
chance to meet [these people] but for Jooly's Joint. S.
Thanks for such a great evening
on Saturday, and congratulations on how well it went! M.
Just a message to say a big
THANKU to everyone for their help and support in Birmingham. It was a great
night, and made new friends. T.
I just want to say thank you very
much for throwing a great party in Birmingham. It was great to see you and
everyone and have a laugh with Iain Lee! R.
Just wanted to say how much we
enjoyed ourselves at the 10th JJ party. It sure was worth the trip from
Australia. I send heartfelt thanks for such a wonderful evening and all the
hard work that went into arranging it. L.
It was my first and I had a great
time! We met so many nice folk. It was a brilliant evening. I am so happy to be
part of this community and I hope to see everyone again soon.
Wow, Jooly's Joint has changed my
life. No-one else understands how I feel, and the people I've met here are my
new family, especially Sparty Dragon & co. Lots of love to you all and
thank you. Be here forever. K.
I feel lucky and blessed to be a
part of the party the other night, it was so great to meet all the people who
used to be just virtual icons on a screen. M.
is a real source of comfort for me. Thank you Jooly and all of you who have
written to me. You've made me laugh, cry and feel loved.
My wife and I will be attending
the party. We are coming from Michigan, USA. I have been a member of the
chatroom for 5 years. It has been a wonderful place for me to go and talk with
others sharing experiences and learning how others deal with the MonSter. I was
diagnosed in 1991 and JJ's has been my only source to talk with others. Through
the past years I have been lucky to travel some to meet the chatters at various
JJ gatherings and even hosted one here in Michigan. We had a couple come from
as far as Australia. JJ has been a real help to me and many friends.
Jooly's Joint is a friend to talk
to and an ear to listen without judgement. R.
Thanks for everything, Julie.
Thanks JJers one and all. My problems become our problems, our problems become
our solutions. Individually we may be weak and floudering, collectively we are
awesome. Tonight we are here to thank Julie for her inspiration and
perspiration in starting and running JJ's. Her ongoing work has touched and
affected all our lives in so many ways, more than she will ever know, so a
large thank you Julie from us here and just as importantly all our absent
friends. I look forwards to dancing with her in another 10 years time.
Thank you for organising the 10th
Birthday party last night. It was the first event I have been able to attend
and I was really impressed by how it went. Everyone I spoke to seemed to be on
a high (OR WAS THAT THE ALCOHOL?!). It was really a great night! Thank you for
a great time and a chance to meet up with people - I'm now able to put a faces
to the names. T.
You throw great parties girl! I
had the most amazing night last night. Tears, laughter, and lots of new friends
- all in the space of a few short hours. I cannot thank you enough for Jooly's
Joint. The people in the chatroom have helped me come to terms with an illness
that is both cruel and unpredictable. I know those same people will continue to
be there for me as I am for them, unconditionally and without judgement. Those
people are my friends, and yet before yesterday I had met very few of them. The
bond between us all was strengthened by simply saying 'Hi'. Many emotions were
felt last night. I felt humbled, proud, but most of all very very priviledged
to be part of an event that no one will ever forget. Thank you. (with a very
sore head today). C.