Chromosome 18 Registry and Research Society (Europe)
Charity Number: SC040399
Annual General Meeting
Sunday November 20th, 2011
20.00hrs Greenwich Mean Time.
We will be holding our AGM as a conference call, using Conference Genie. To achieve a quorum, we need at least 21 people to participate in the meeting. The details of how we use Conference Genie for the call islinked. It won’t take long.
The reports of the Convenor, Secretary and Treasurer are also attached to this email, and will be on the web-site for everyone to read one week before the meeting.
Please join us for this important meeting. If you could e-mail to say if you hope to be able to join the phone conversation, it would be a very great help.
We know of 106 families in Europe whose children are affected by Chromosome 18 disorders. Of those, 76 families are currently on the list of members who have updated their membership, and so receive the daily listserve digest from the syndrome moderators. Our membership secretary, Jeni Morrison, gets a list each month from Gloria of all the members who are due for renewal, and she contacts each family to remind them. All she needs from you is either a note to say that you have renewed your subscription or that you are unable to pay at this time, and your membership is updated. Either is fine!
Please, if you haven’t completed a membership form yet, go to the newly updated website (more below) atwww.chromosome18eur.org On the page Membership Forms you’ll find the forms in several languages to complete and submit.
If you have received a reminder from Jeni, please check that you have sent a reply: I was surprised and concerned to see several good friends on the list to be removed.. Not sure of your membership status? Drop Jeni an email at email@example.com
If you want to attend the conference in Milan next year – and I’m looking forward to seeing you all there – you have to be a member of Chromosome 18 Registry and Research Society.
It’s up and running! Tony Russell, ably assisted by his son Kieran, now has the website updated and working beautifully. There is a forum where we can discuss any issues to do with Chromosome 18 disorders, the announcement of the upcoming conference in Milan next year (you do know we’re going to Milan at the beginning of August 2012, right?), information about the latest fundraising events, links to the information pages about the various syndromes, and this is where you will be soon able to find minutes from the committee meetings.
Please participate! Send in any news, photos and comments asap; mention us on Facebook …spread the word, and help us to make this THE place to go!
Tom Wilson recently had all the hair on his head shaved off, and raised an amazing £820..25 for Chromosome 18 Europe. An incredibly brave thing to do, especially when he’s just 11. What a star!
Zoe Oxenbury is running a Ready, Steady, Cook style / Pampered Chef event in Devon…so wish I lived closer and could get there (I love to eat, and don’t mind cooking to do it)
Cheryl Donlan is running a Christmas Party night for 220 people in Manchester on December 16.. Already sold out, but get in touch with her if you can help in any way (more information on her Facebook page, and coming to the website soon!)
Milngavie Choir have invited us to serve tea and coffee at their Christmas Carol Concert on December 17. Lovely, easy fundraiser for those of us living in and around Glasgow where last year we raised more than £200 in an hour! Many thanks to Christine Holloway for making this connection for us: this is our third outing there.
Mark Kirkham is preparing to run along Hadrian’s Wall to raise funds for both Chromosome 18 Europe and Nystagmus Research…find out more on his Facebook page.
Let me know if you are running a fundraiser of any kind. For example, Shereener Browne took part in a duathlon, Sara Jackson ran a bandaoke night, Cheryl Donlan and Jean Bates organized a sponsored climb of Mount Snowdon, Erin and Neve Mortimer donated money people would have spent on presents for their birthday, Ann MacLauchlan gave us the money which would have been spent on her big birthday party…Let me know what you’ve done and how much you raised so I can send your certificate.
Looking forward to hearing from you soon, and ‘meeting’ online.
Secretary Chromosome 18 Registry and Research Society (Europe)
Charity Number SC040399