Rep roundup – March

Finally into April – the most important month in the SWAN UK calendar. It’s the month of Undiagnosed Children’s Day.

Have you seen the Instagram Challenge? Are you taking part?  How about the blogging challenge? What have you all got planned for the big day? The local SWAN UK Volunteer Parent Reps have been busy this month, trying to raise the profile of SWAN UK. One of the big aims for Undiagnosed Children’s Day this year is to find new members, so that’s been our main focus and will continue to be right up until the big day, and onward for the next year.

We are aiming to double our membership numbers by the end of the year.

Throughout the last few weeks there have been coffee mornings arranged, and attended. At these coffee mornings, other than drink coffee, and chat, we also discuss the things that you would like SWAN UK to do, whether that’s a trip somewhere or a local event you know of where a stand could be held, a fundraising event idea, or local issues that raising awareness of being undiagnosed could help with. You should have received an E-news recently with all the information of the upcoming coffee mornings on! If you haven’t drop us a line and we’ll make sure everything is set up! Over the last month there have been coffee meetups in Northampton, Newcastle and Nottingham (all the Ns)!

Along with the regular coffee mornings, we’ve been setting up regular stay and play sessions, where you can just turn up on a set day each month, and there will just be SWAN UK members there! There are lots of these across the country now and they are proving to be very well attended and popular! You can find them in Newcastle, Bristol, Rotherham, Warrington, Worcester and Thatcham, and there will be more locations added soon too!

Lots of us have been organising trips for the next month or so too! These take far more organising than you’d think, from checking the venue is happy to accept group bookings, haggling prices of tickets (got to make those funds stretch!), checking accessibility, and asking if they can offer us anything ‘exclusive’ as well as checking the methods of payments they take. This is not always as straight forward as it seems! Then advertising the events for you all, collecting all the information for tickets, putting them in a spreadsheet for someone from the office to ring up and pay for the tickets.  Emma and I have set up a very last minute trip for West Lodge Farm Park, there are also events at Paulton’s Park and Flamingo land (you can only attend Paulton’s Park or Flamingo land this year due to funding).

You may remember me mentioning about Kidz to Adultz Middle previously. It generated three meetings for Jo and an article to write, as well as an influx in new members. March brought a record number of members in one month so our efforts are beginning to pay off!

Please, please help us find even more members to join us, so that we can offer them the support we have all received!

Some of the new reps are beginning to get all their ‘Parent Rep’ accounts on Facebook, and email addresses, as they work through the training, joining the rest of the rep crew, balancing life as a SWAN UK parent, the training and trying to build their local networks too!

Aimee did a talk about SWAN UK and the work we do, and the support we offer to a LOT of GPs at one of their learning events recently, which was very well received, and it was filmed! It is currently being edited but you’ll be able to have a watch of that, and see a SWAN UK Volunteer Parent Rep in action, representing our community! Louise also did a presentation to a number of professionals recently in the Bristol area!

Holding SWAN UK stands at information events and hospital departments are becoming more frequent and are mainly about raising awareness of undiagnosed genetic conditions, why SWAN UK is there and what we offer to both prospective families and professionals. The bright pink tends to catch people’s eyes! If you have noticed in the E-News that there is an event coming up near you and you’d like to get involved, please let the Reps know. We’d always appreciate some support, even if it’s just for 30 minutes!

A week or so ago, a lot of the reps came together to do a ‘virtual catch up’ and despite the technical hiccups, I believe it all went well! One of the things that was discussed was the Twitter Takeover! This happens every week on a Wednesday, usually from 8pm-10pm. One of the reps, or one of the SWAN UK bloggers, takes over the SWAN UK twitter account and we try and get engagement from others on Twitter to raise awareness of who we are. Lots of reps have no idea how to use this social media platform so we’re trying to encourage as many of them as possible to do it too! It would be fab if you could also log in at this time to interact with whoever is doing the Twitter Takeover, it can get really lonely, but also the more replies and tweets we receive back, the more people will see the SWAN UK account!!

So that’s it for March; April will be very busy with Undiagnosed Children’s Day events, coffee mornings, stay and plays, lots of emails, and requests, and media sharing for all of us, and hopefully from all of you too, as well as lots of fundraising. Without this we won’t be able to continue as we currently are!

We hope to see a lot of you really soon, at coffee mornings, information events, days out, or stay and plays!

Find out more about SWAN UK Parent Reps here.


EMAIL CLAIRE WALTON: [email protected]

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