Rett UK Family Weekend

The 27^th Family Weekend was nearly upon us.  After months of planning, liaising and organising (thank you Julie!) the Rett UK team was ready and the office looked rather empty as everything was in the van and zooming up the M1 to The Hilton, Northampton.

Julie, Steph, Debbie, Iram and Sarah arrived on Friday morning, resplendent in green Rett UK t-shirts, to unpack and set up Welcome Packs, merchandise (still available via the office) and information sheets.  I took a detour to Luton Airport to collect a family from Rett Syndrome Ireland and arrived just in time for lunch!  Over the course of the afternoon the wonderful Care Team arrived and transformed some of the hotel’s rooms into a rainbow of fireworks.

There’s always a slight lull just before families arrive.  This is a chance for the team to catch their breath. Despite this being a long work weekend, I can assure you that we really look forward to spending time with you all.  This year saw an incredible 229 people join us.

Old friends welcome new – no one is a stranger. There was much learning, socialising, dancing, eating, laughing, crying.  I won’t give you a run through of every single session but over the course of the weekend we covered subjects such as scoliosis, facial sensitivity, research, epilepsy, middle-age, person-centred planning and CDKL5.  We were extremely honoured to host the launch of CDKL5 UK and provide UK families affected by this diagnosis with their first opportunity to get together as a group.

The music and chatting carried on to the early hours of the morning.  In fact, I think the Rett UK staff were amongst the last to go to bed each night, obviously taking their hosting responsibilities very seriously!

In January Rett UK will undertake a review of family support events – a ‘who, what, where, how and why’ type analysis.  We need to ensure we are providing you, our members and supporters, with the events you want.  Please do let us know your thoughts, and keep an eye out for information about our Regional Day in March next year.

Thank you for all the support you give to Rett UK.  We are a small charity, doing a marvellous job, supporting anyone affected by Rett syndrome, not just nationally but throughout the world.  I shall continue to support Rett UK and I urge you to do the same.  We are unable to put a timescale on a cure and in the meantime other families will receive the devastating news that their child has Rett syndrome.  We can’t support them without you.

This was my fourth and last Family Weekend, as I am leaving Rett UK in January.  As I said in my ‘goodbye’ at the weekend (just before I cried and couldn’t speak any more) you are all an inspiration to me.  Your endurance and compassion for others is limitless.  Your children are amazing human beings and their smiles never fail to bring me warmth.  Thank you, Melanie x

Rett UK's first ever blog, to celebrate meet Melanie Ekless, Chief Executive.

We sat down with Melanie for a quick 5 minutes with. Here’s what she had to say..

How long have you worked at Rett UK/RSAUK, what are your main responsibilities?

I have worked at Rett UK for 3 1/2 years, firstly as the family support manager for the Rett Syndrome Association UK.  This was an amazing job and I learnt so much about the challenges and joys faced by families and was able to develop a considerable understanding of how the team could best support our members.  In 2009 I was honoured to become the Chief Executive and oversaw the move to Rett UK, which was formalised in April this year.  I work directly with the board of trustees and ensure the operational aspects of Rett UK are in line with the aims of the organisation and ensure maximum benefit to our members.  I liaise closely with other organisations, both nationally and internationally and am currently developing some key strategic alliances that will be announced shortly.

What are the highs and lows of your job?

The highs of my job all relate to knowing that the support we provide at Rett UK really does make a difference.  Hearing that a family has found solace from the Family Weekend, or that one of our advocacy letters has resulted in better services or benefits reassures that the work we do is vital.   Fundraising is always an endless task and this past year has been particularly tough for Rett UK.  We have seen general donations fall, together with income from trusts.  However, even this low had it's own pick-me-up.  Income generated by our members holding events has risen.  This is particularly well received as it reminds the team that our support truly is needed and that our members will support us in return.  I am continually ensuring our expenditure is as low as possible, ensuring Rett UK has not yet had to cut any service.  We're certainly never out of the woods as far as income is concerned.  Please remember that our support staff are not 'overheads'.  Without them our helpline would not exist, we would be unable to raise awareness of Rett syndrome and train the very professionals needed to support with health and social care.

Where have you worked prior to Rett UK?

I started my working life as a training facilitator followed by undertaking administrative work for both a chartered surveyor and a bakery. I have an HND in Health and Social Care Management and have worked for many years with people with a whole range of learning and physical disabilities, most specifically autism and epilepsy.  I have also studied again and have a BSc (Hons) Epilepsy.  Prior to coming to Rett UK one of my major achievements was pulling together a group of disparate teams to create a Learning and Skills Development Centre for people with complex learning disabilities, all of whom had epilepsy.  I have taught individuals with disabilities to swim, developed communication passports and set up an empowerment group.  I truly believe that everyone has a voice. Society just needs to change to make sure they're all heard.

What do you do on your days off?

On my days off I am with my family - my husband Simon and our 21 month old daughter Millie.  I attend playgroups, meet with other mums and babies in coffee shops or the park, teach Millie to swim and a myriad of other activities that are a world away from being the Chief Executive of a national charity.  I have two cats, who are terribly old and have wonderfully strange idiosyncracies.

Tell us an interesting fact about yourself?

In 1991 and 1993 my husband and I backpacked extensively.  People who know me now are quite unable to picture it!  We were in earthquakes, bomb attacks and hurricanes.  Between us we got scabies, ringworm, dysentery, salmonella poisoning and the largest headlice you could possibly imagine.  We have seen some of the most spectacular places in the world and met some extraordinary people.  We volunteered at an orphanage in Guatemala looking after 2-3 year olds, my first experience of care work.  The children's stories broke my heart, but the children themselves - wow!  They changed my life and I have worked in the charity sector with people with disabilities ever since.

What has been the stand out moment of your time at Rett UK?

It's a cliche but there really are so many wonderful aspects of working for Rett UK that to pick out just one doesn't seem to do the journey we have taken justice. I am absolutely passionate about communication methods for people with learning disabilities and an early high for me was being Rett UK's lead in the development of our Communication Toolkit for people with Rett syndrome, developed with the British Institute of Learning Disability (BILD). It was especially satisfying to have Speech and Language Therapists ask if they were able to use it - of course the anwser was 'yes'.

http://www.rettuk.org/