Jooly's Joint: people with MS supporting each other

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A little inspiration Jooly's Joint
10th Birthday Party!



On Saturday 3 September 2005, at the Hilton Metropole Hotel in Birmingham, UK, more than 200 members of Jooly's Joint, our friends and families gathered together to celebrate 10 years of Jooly's Joint.

A lot of alcohol was consumed. Jooly did a lot of dancing. And a very, very, very happy time was had by all.

To the right, a picture of Jooly with our party host LBC 97.3 DJ and all round fabtastic bloke Iain Lee.

Julie with Iain Lee


Order of events: 5:00pm Guests start arriving; 6:00pm MS Society Drinks Reception; 7:00pm Food is served; 7:15pm Iain Lee Welcome; 7:30pm Revolution 9; 8:30pm Quiz; 9:30pm Speeches; 10pm Results of quiz; 10:15pm Revolution 9; 11:00pm Iain says thanks and farewell.

A little inspiration Pictures from the night!


Party cakeA little inspiration The cake!

Thank you to Becky Middleton of Sugar Licious who donated the fabulous Jooly's Joint birthday cake.


Stories from the night!


Press coverage!

  • BBC Ouch! 1 Sept 2005
  • BBC Look East 2 Sept 2005
  • BBC Radio Cambridgeshire 4 Sept 2005
  • The Guardian 7 Sept 2005
  • BBC Radio Norfolk 16 Sept 2005
  • Disability Now October 2005
  • MS Matters Sept/Oct 2005

A little inspiration Iain Lee!

For more information about Iain Lee visit:


A little inspiration Revolution 9 setlist!

Set one:

  • Brown Eyed Girl (Van Morrison)
  • Disco 2000 (Pulp)
  • Daydream Believer (The Monkees)
  • Alright (Supergrass)
  • Boys and Girls (Blur)
  • Still Haven't Found What I'm Looking For (U2)
  • Road To Nowhere (Talking Heads)
  • (Come Up and See Me) Make Me Smile (Cockney Rebel)
  • Town Called Malice (The Jam)
  • She's the One (Robbie Williams)

Set two:

  • Help! (The Beatles)
  • Dancing in the Moolight (Toploader)
  • That's Entertainment (The Jam)
  • Satisfaction (Rolling Stones)
  • You Really Got Me (The Kinks)
  • All Day and All of the Night (The Kinks)
  • Teenage Kicks, with Bruce Lawson on vocals (The Undertones)
  • Mustang Sally, with Jooly and 3 ladies from JJ's on vocal, god help us (The Committments)
  • I'm a Believer (The Monkees)
  • She Loves You (The Beatles)
  • Live Forever (Oasis)
  • Twist and Shout (The Beatles)
  • Happy Birthday

For more information about Revolution 9 visit:


A little inspiration Jooly's speech!

"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 being here.

"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 tonight.

"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 this weekend.

"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."

A little inspiration Comments 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 M.

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. D.

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.

My diary 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. S.

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. B.

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. T.

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.




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