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SMA – not just a baby milk – my amazing conference weekend

As I tweeted earlier I really do not think my wheels have touched the ground in over a week but I am still smiling 🙂 The last update was the hilariously funny day and night out with Rico. I had quite a boozy Tuesday night with a works drink and my friend Nichola from uni days. I would like to point out I am most definitely making the most of my stronger, more energised summer months before I undoubtedly will need to cut back as winter kicks in – disclaimer 😉 so Wednesday I drove (quite hungover) after a long day at work to South Mimms for a committee meeting with the Spurs DSA. Finally amongst a nice week at work I caught up with Bhav and Shaz Thursday before packing for the big weekend – the JTSMA conference.

So myself and my PA, Bea (or Pab as Daryl thought she was called) headed to Stratford-Upon-Avon. With a quick Maccy D’s at a teenage bowling alley we stumbled across, we arrived around 9. This year my dad and step mum Kate came, as did mum and step dad, Dave in a tag team style. I have obviously been the past couple of years in my trustee capacity. I actually stood down this year from that responsibility which I kindly received a present for my contribution at the AGM. However, mum and dad hadn’t been in many years. Dad has always enjoyed the informative side, while mum loves a social knees up. I guess thats where I get my serious and silly sides from. So I had a couple of drinks and caught up with dad and Kate before some needed sleep.

The morning started at 10. Unfortunately Jon Snow had to cancel which was a shame. The professor who diagnosed me 24 years ago did a talk on the 25th anniversary for the trust. He said if I emailed him he would look at publishing an article for his international muscle journal. Then the CEO of the MD group did a piece on campaigning issues, before 3 science people talked and touched upon a clinical trial around a drug to improve SMA muscle power and the other latest updates on research into a cure. Its always a strange one hearing the research as I am so happy now with my life, a cure would be weird, but flip side is it would be cool to start playing for Tottenham in a year and even shower myself, lol, so I take that session as it comes.

After a bite to eat I ran a workshop with Cath M called satin sheets and silk pyjamas. The idea being if you have the above it is easier to be turned in bed. Hence the whole session was on more unusual practical tips, such as my screwdriver to use my car heater. Partly because of the name too many people signed up and the room was changed to fit them. The session was amazing and so many helpful things were shared. I would love a website or facebook group to continue this, any thoughts?

Afterwards I really enjoyed chilling with Tess, Tash, Tumu, Jay, Amy, Daryl and the other SMA crew. We aren’t in the ultra cool camp of 0-12 who whiz in their chairs KO’ing people, that was me once though, lol. They seriously rocked. Then I got asked to participate in a DVD of disabled people which was cut and shown by a lovely team of people. I’ll see if I can upload it when its sent. Dad headed after the workshop and mum and Dave arrived about 7 for dinner and the party. We had a great night and did 3 karaoke tunes plus a bit of a dance. I stayed up till 2 with the crew after that.

Sunday morning I did a short talk on my experience of the JTSMA in front of the 60+ people. Bit scary. I just summed up my views from childhood meeting other people with SMA and liking the feeling of not being alone. I also remember the transition period when I met Toby, a great friend now, and seeing going to uni was an option. More recently I love passing on my experience to the younger guys and feeding into the trust some ideas I have on progressing things further. I also managed to meet a fantastic lady who had a 4 year old with SMA and another lad unaffected. She had added me on facebook so to then meet her was cool. She’ll definitely bring her kid up to do well, could tell that from our short meeting.

A massive well done to the staff who made such a great weekend happen. It was brilliant for all and was definitely my favourite conference ever!

I got home with mums assistance in the passenger seat half the way. Showered and chilled before work today. Was rather a hectic one. Tonight, I have written an article for Disability Now and just done this blog. Ready to collapse but am more caught up now. Apart from work I am writing the Spurs DSA fundraising plan and the e-campaigning toolkit for Dislib this week. Busy times.

Oh yeah one final thing. I have been asked to model in Octobers disabled and sexy fashion show. Please please please come with your friends. For tickets, email [email protected] or call 07517575750.

Also Checkout the facebook group for more details I just hope I get to wear respectable looking clothes 🙂

Hvad skal man gøre? Det første er at identificere lægemidlet besøg. Det andet er at stoppe det. Det tredje er at finde en analog eller et lægemiddel, der gør det muligt at opnå de samme terapeutiske mål, men uden at påvirke potensen.