Rett News Support today, hope for tomorrow - IN THIS ISSUE
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
S
Rett News
upport today, hope for tomorrow
www.rettuk.org
issue: two/2019
IN THIS ISSUE
October is Rett Syndrome Awareness Month
Busting Myths about Rett Syndrome
Second Clinical Trial Announced
Health Checklist for Rett Syndrome Published
Rett UK
Victory House, Chobham Street, Luton,
Rett News Contents
Bedfordshire LU1 3BS
General Enquiries: 01582 798 910
Support Line: 01582 798 91 1
Email: info@rettuk.org Welcome from the CEO 3
fundraising@rettuk.org
Website: www.rettuk.org October is Rett Syndrome
Facebook: Rett UK Awareness Month 4
Twitter: @RettUK
Just Giving: www.justgiving.com/rettsyndrome Support Round Up 5
HONORARY POSTS – PATRONS
Lee Allen, Ann Clwyd MP, Dame Evelyn Glennie, Raising Awareness and The Rett
Gloria Hunniford, Victoria Murphy, Jon Snow Disorders Alliance Health Checklist 10
PRESIDENT
Yvonne Milne MBE
The Old Palace Lodge Hotel
VICE-PRESIDENT Family Weekend Deals 12
Lorna Jaffa Good News Stories 14
TRUSTEES
Honorary Chairman: Hilary Truss The Britten’s Tea Party 16
Honorary Vice-Chairman: Stuart Ledger
Honorary Treasurer: Steve Peckham North London Support Group Picnic 17
Tim Addison, Clive Beadle, Michael Britten,
Joanna Campobello, Philip Gander, Stuart Ledger,
Rett UK Clinics Survey 18
Celia Carter, Peter Oliver, David Rogerson, Other People’s Reactions 21
Robert Valentine, Rebecca Walker-Date
RETT UK STAFF TEAM Dr Gillian Townend Academic Success 24
CEO: Becky Jenner
Deputy CEO: Robert Adamek
Rett UK Communication and
Family Support Manager: Julie Benson Education Support Update 26
Office Manager: Donna Tinch
Editor: Donna Tinch Network for Speech and
Head of Fundraising: Viviane Vayssieres Language Therapists 29
Fundraising Support Officer: Michelle Prendergast
Admin & Events Co-ordinator: Keren de Coito Research Update 30
Communication & Education Support Team:
Dr Gill Townend, Callie Ward, Abigail Davison-Hoult Myths About Rett Syndrome 31
Bookkeeper: Becca Prince
2018/19 Highlights & Impact 36
Rett News is published quarterly by Rett UK
Designers: 1st Impression Creative Ltd Fundraising Round Up
Printer: Creamers Ltd London Marathon 38
The views expressed herein do not necessarily represent
the views of the editor or of Rett UK’s officers, members
Thank You 40
or Board of Trustees. Parts of this publication may be Good Luck 52
reproduced by permission. Note: Rett UK can accept no
responsibility for items advertised in Rett News. Might you be a Rett Champion 53
2019 Events 54
Rett syndrome (RTT) is a rare neurological
disorder and is the most common genetic cause
Events for 2020 You Can Get
of severe disability in females, yet very few people Involved In 55
have ever heard of it. Although rare, males can
have Rett syndrome too. It is present from Create a Legacy 59
conception and usually remains undetected until
major regression occurs at around one year of Welcome to Our New Team Members 60
age, when children may lose acquired skills and Regional Ambassadors 61
become withdrawn. Genetic but largely not
inherited, Rett syndrome is usually caused by a 300 Club Results 63
fault on a gene called MECP2 which is found on
the X chromosome. People with Rett syndrome Membership 64
have profound and multiple physical and
communication disabilities and are totally reliant Make a Donation Form 65
on others for support 24/7 throughout their lives.
Christmas Cards and Gifts 66
RETT NEWS · ISSUE TWO/2019 · PAGE 2 HELP SUPPORT US TO HELP SUPPORT YOU
Welcome to Your
Latest Rett News
Hello and welcome to another bumper issue of your Rett News! We hope summer has
gone well! Back to school is just around the corner – sighs of relief heard all round!
You may have noticed our summer issue is a tad late but that is because we have
so much in it! Fed up with people giving odd looks or staring when you are out
and about with your child? Something sadly I think we have all experienced, well
read our article on page 21 for some tips about how to handle this.
Some exciting news in the Rett community with the announcement of a second UK
clinical trial for Rett syndrome on page 30 and an important new resource for our
families, The Health Checklist for Rett syndrome has been published. See page 10.
Dr Daniel Lumsden presented Busting Myths in Rett Syndrome at a recent
neurological conference in Birmingham which we can share with you on page 31 –
really interesting read.
In the centre pages, we take a look back at 2018/19 with highlights from the year,
where we spent funds raised and the impact our work has for our families. I am
delighted to see that our spending on charitable activities over the last four year
has increased by 51%! That is more services and more families helped every day.
In June, the team were in Glasgow, for our second regional event of the year. It was
fantastic to hear the feedback from the families there and to meet some older ladies
who had only recently been diagnosed. We are in High Wycombe on 11th/12th
October, so we look forward to meeting the families and the professionals that are
supporting them at Chiltern Wood School.
Global Rett Syndrome Awareness Month is nearly upon us again! This is a great
opportunity to shout about Rett syndrome – raising awareness = new interest =
new supporters! We have lots of easy ways for you to get involved on page 4.
The Big Give is back so please ‘save the date’ for the online donation stage in
December – one donation but double the impact! If you are saving pennies in a jar
or would rather make a donation than send Christmas cards – please make your
donation on the Big Give.
Huge thanks and admiration to all our amazing fundraisers – read their inspiring
stories and antics on pages 38 to 51. Without this support Rett UK cannot continue
– so if you are thinking of getting involved please let us know. Together we are
making a brighter future for people affected by Rett syndrome.
Best wishes,
Becky Jenner, CEO
HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/201 9 · PAGE 3
OCTOBER IS...
Rett Syndrome Awareness Month
For a whole month, we have the opportunity to stimulate
recognition via Public Relations and encourage fundraising
through donations.
Here are some simple ways you can Want to get involved by raising
get involved and make some noise for some funds to support our work?
Rett syndrome!
• Can you get a school in your area to
Online wear something purple or green on a
• Follow us on social media using certain date? Or how about at your
our hashtags – Twitter, Facebook work place, collecting donations to
and Instagram support our work?
#ColoursForRett
• What is the biggest challenge your
daughter/son faces on a daily basis? • Get friends and family together for a
Share a social media post and photo local sponsored cycle/run/swim/walk
of your daughter/son #WalkOverRett
#LivingWithRettSyndrome • Hold a cake sale/coffee morning at work
#RettSyndromeAwareness #BakeForRett
#RettUK Access a full list of resources and ideas at
• Write a guest blog (approximately www.RettUK.org/awarenessoctober
250 words and a photo) for our Don’t forget to let us know what you
website, emailing it to have planned, we can support you with
becky.jenner@rettuk.org fundraising and promotional materials.
#LivingWithRettSyndrome
Got your own idea of what you would
We will be posting regular updates and like to do? We will help you every step
sharing information about Rett syndrome of the way. Call Viv on 01582 798 910
throughout the month. or 07929 355 541.
In Bedfordshire, schools managed by
Active Luton and Luton Borough Council
are supporting Colours for Rett, one day
during the month of October, children will
pay £1 to wear purple or/and lime green
Rett colours. If you wish to participate
posters and envelopes are available.
Email viviane.vayssieres@rettuk.org
We would love to see some photos
and hear how it went for future
issues of Rett News.
Please share with
donna.tinch@rettuk.org
RETT NEWS · ISSUE TWO/2019 · PAGE 4 HELP SUPPORT US TO HELP SUPPORT YOU
Support Round Up Improving knowledge
by Julie Benson and understanding
of Rett syndrome
A big thank you to everyone who
presented or supported us at this event,
including the volunteers who helped
with the care rooms, the school staff
who made sure we had everything we
needed available and also to the kitchen
staff who gave us the most amazing
buffet lunch.
Special thanks to our team of professionals
who once again gave up their Saturday
to attend this event: Dr Adrian Kendrick,
Regional Day, Scotland – Dr Ana Abdala Sheikh and Dr Mark Bailey.
Isobel Mair School
In June, the Rett UK team headed to
Scotland for a regional day. Isobel Mair Feedback from Eva mum to Lysbeth,
School were fantastic hosts and aged 4
supported the event.
Fantastic presentations made by very
We had 15 families from all over Scotland knowledgeable people. Grateful for all
and we were pleased to see them all. their expertise, advice and research into
Our professionals gave some informative the different areas of Rett syndrome.
and interesting presentations. Dr Adrian
Thank you so much for keeping us up
Kendrick, spoke about the impact of
to date with such important information.
breathing and sleep apnoea, Mark Bailey,
It’s so, so important for the health and
updated us about the latest research
wellbeing of our children. Thank you
projects they are working on, Elizabeth
for being there and being such an
Dougan from The Office of Rare Conditions
explained about their role in Scotland, incredible support.
the projects they are currently working
on and what they can offer families with
children with Rare Conditions in Scotland. The families who attend always give such
We were also delighted to welcome Dr great feedback, which helps us to keep
Gill Townend to this event, who introduced these events in line with what you want,
us to the International Communication but we are always interested in hearing
Guidelines, she has been developing with about what else you may like on the
partners across the world. Gill is also programme at future events.
supporting the Rett UK communication
and education project alongside Callie Please call Julie on 01582 798 911 with
and Abigail. Exciting times! any suggestions.
HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/201 9 · PAGE 5
RETT NEWS · ISSUE TWO/2019 · PAGE 6 HELP SUPPORT US TO HELP SUPPORT YOU
HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/201 9 · PAGE 7
Look out High Wycombe, you are next on our list to visit! We can’t wait to see you
on 12th October at Chiltern Wood School, Cressex Site, Verney Avenue, High Wycombe,
Buckinghamshire HP12 3NE.
If you haven’t received your invitation yet, please call Julie on 01582 798 911 or
email support@rettuk.org and she we will send you a booking pack. We do need
to know if you are coming along so that we can cater for everyone and to ensure
we have enough carers.
DATES FOR Professional Events
YOUR DIARY 11th October 2019
Chiltern Wood School
Regional Events High Wycombe
Buckinghamshire HP12 3NE
2019/2020 To book:
Parents/carers/siblings and www.rettuk.org/professionals
professional practitioners are
all welcome to attend these 27th March 2020
informative, entertaining days. London/Kent
5th June 2020
Northern Ireland
9th October 2020
North East
Family & Professional Events
12th October 2019
Chiltern Wood School
High Wycombe
Buckinghamshire HP12 3NE
To book:
www.rettuk.org/regionalday
28th March 2020
London/Kent
6th June 2020
Northern Ireland
10th October 2020
North East
RETT NEWS · ISSUE TWO/2019 · PAGE 8 HELP SUPPORT US TO HELP SUPPORT YOU
HAVE YOU
OPTED IN?
IMPORTANT!
Update your
details NOW!
Dont' miss out
on future issues
of Rett News!
Changes to data protection
Can You Help? regulations require you to
OPT IN in order to continue
to receive our information.
What difference do We also need to ensure that
we make? you have specified HOW
you would like to receive
Rett UK receives no direct government that information.
funding and relies entirely on the
generosity of our families, their Thank you to everyone who
friends and colleagues in order to has returned their forms or
help us continue to provide the completed online. For those
much needed and valued Family who haven’t yet responded,
Support Service. we urge you to do so as soon
as possible.
We do also regularly receive funding
from grants and trusts but If you require a copy of the
increasingly they are asking us to tell form, please contact Donna
them about the difference we make Tinch on 01582 798 910 or
to the lives of people with Rett email donna.tinch@rettuk.org
syndrome and their families. Alternatively, you may
We would like your help to provide complete the ONLINE form at
this information to funders in order www.surveymonkey.co.uk
to evidence the value and the /r/RettUKContact
impact of the professional support
and information we provide to our Thank you for your support.
families.
If you have a story of support to
share, please email
becky.jenner@rettuk.org
Thank you!
HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/201 9 · PAGE 9
Raising Awareness Improving the health
and The Rett Disorders and well being of
people with
Alliance Health Checklist Rett syndrome
Important New Resource for
Families and Professionals
The Rett Disorders Alliance UK (Reverse
Rett, Rett UK and FOXG1) are delighted
to bring you The Rett Syndrome Health
Checklist. The Health Checklist provides
information to help with symptom
identification and management including
suggestions for drugs which may help
and those which may cause difficulties
for people with Rett syndrome. There are The Rett Disorders Alliance Health Checklist
also links to relevant research papers,
case studies and best practice guidance. Many thanks to everyone who has
contributed to this important document
The checklist is a result of two years and to The Bolland Charitable Fund for
collaborative work between the charities their support.
and the Rett Disorders Working Group;
clinicians, therapists and consultants who Download your copy from
are very experienced in Rett syndrome. www.rettuk.org/healthchecklist.
This is the first version and we anticipate Alternatively, we do have a limited
there will be regular updates. number of printed copies available.
There will be further papers linked to the If you would like a printed copy, please
checklist which will cover some key email julie.benson@rettuk.org.
areas in more depth. We hope you will
find this a key ‘go to’ document to
advocate for the best care and treatment
for your daughter or son. Please share it Rett Disorders Alliance UK
with key people involved in their care. RETT UK • REVERSE RETT • FOXG1 UK
MY HEALTH PASSPORT
Don’t forget to make use of the Rett UK Health
Passport, which can be downloaded from
www.rettuk.org/healthpassport, which enables
you to record and easily update everything that
someone involved in your daughters’/son’s care
should know in one place.
RETT NEWS · ISSUE TWO/2019 · PAGE 10 HELP SUPPORT US TO HELP SUPPORT YOUAwareness Raising and Neurological Disorders in the Community.
Promoting the Rett Syndrome I was delighted again that Rett UK and
Reverse Rett were able to share a stand.
Health Checklist
Rachael Stevenson and Wesley Havill
by Becky Jenner from Reverse Rett, Yvonne Milne and
We were fortunate to have two great myself from Rett UK all talked to lots of
opportunities to raise awareness of Rett health professionals and were able to
syndrome, the work of Rett UK and give them copies of The Health Checklist
share The Health Checklist in June. hot off the press! Their feedback was
On Monday 10th June, I shared a stand excellent; they could really see the benefit
with our colleagues, Beth Johnson and of the document for a rare disorder..
Oliver Perkins from Reverse Rett at an It was also great to have Dr Daniel
Epigenetics Conference held at The Lumsden, who leads the Rett clinic at
Royal College of Medicine, London. The Evelina Children’s Hospital in London
The conference provided ‘detailed updates presenting. His presentation was
in the exciting field of Epigenetics, Presenting with Features of Autism,
focusing on how chemical modifications Parkinson’s and Epilepsy – Addressing a
to our DNA can shape our health from Diagnostic Challenge. The focus of his
conception to old age from one talk was to dispel some of the myths
generation to the next. Epigenetics is which exist around Rett syndrome –
emerging as a key player in medicine.’ that it is not neurodegenerative, that
it only affects females, that the majority
There were some really interesting
will die young etc. He touched on what
presentations and discussions about we have learnt over the last 50 years
how epigenetics may help us understand since the first children were diagnosed
much more about health and disease. and the clinical trials which we hope
The key note speaker was Sir Adrian Bird, will provide some relief to certain
whom many of you will know from his symptoms of the disorder. Read about
Rett syndrome reversal research with lab his presentation on pages 31-35.
mice. His presentation was The Genetics
and Epigenetics of Rett Syndrome which
focused on the failure of MeCP2 protein
whose primary function is to subtly restrain
gene expression in a specific way and
talked about the reversal of symptoms
in lab mice when MeCP2 is replaced.
The conference itself provided lots of
opportunities to talk to professionals
from various disciplines about Rett
syndrome (the majority had not heard of
it) and all gave really positive feedback
on The Health Checklist which we had in
the draft format.
On 25th June, in Birmingham, we officially
launched The Health Checklist at The
Primary Care & Community Neurology
Society 2019 Annual Symposium, the Sir Adrain Bird and Becky Jenner
focus this year was Managing Complex at the Epigenics conference
HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/201 9 · PAGE 11Our Patrons – The Old Palace Lodge Hotel Complimentary breaks for our families and carers at The Old Palace Lodge Hotel Social Responsibility is important to us, we take an interest in wider social issues that have no direct impact on profit margins, we like to support our local communities; amongst other engagements every year we select a non- for-profit organisation as our Charity of the Year. When I read about Rett syndrome and the support offered by Rett UK to the families affected, I decided to patronage this wonderful charity based in Bedfordshire. Once I had met Becky Jenner, I knew it was absolutely the right thing to do! As parents ourselves, my husband and I are attracted to helping associations dedicated to the welfare of children with disabilities, would it be by creating awareness through our marketing platforms, raising their profile with partnership solutions or sponsoring innovative fundraising events. However, while our hotel strives to deliver excellence in all aspects of hospitality, providing business and leisure visitors with a Four-star experience, we realise that for some parents or carers of children with Rett syndrome it is a luxury they can ill afford, not always financially but in term of deliberation, organisation and peace of mind hence we are offering a complimentary overnight stay with breakfast for 2 parents/carers on a Sunday night. To redeem this exclusive offer, request your password from Rett UK. To book simply email reservations@mgmhotels.co.uk or call 01582 662 201-Opt1, quoting your password. Victoria Victoria Murphy, Hotel Manager What a fantastic opportunity Victoria Murphy at The Old Palace Lodge has given to our families and carers. We really appreciate this kind gesture. Some feedback from our families who have been able to use the offer include: Just want to say a huge thank you! We stayed at The Old Palace Lodge last night and had a lovely relaxing overnight stay! The room was wonderful; think they put us in one of the biggest rooms! We felt very chilled this morning. Thank you. Louise RETT NEWS · ISSUE TWO/2019 · PAGE 12 HELP SUPPORT US TO HELP SUPPORT YOU
Family Weekend Deals and Tickets to Whipsnade Zoo Weekend deals are available for 2 adults and/or 2 adults + 2 children* under the age of 12 and include dinner and bed & breakfast for one night. Deals are for any month on a Friday, Saturday or Sunday night. Extended stays are available. To book contact the Old Palace Lodge Hotel on 01582 662 201-Opt1 or email reservations@mgmhotels.co.uk *This as an opportunity for a respite break for the parents/carers and siblings, or parents only so these offers are not suitable for children with mobility issues. 4 star weekend break 2 adults – £140.00 2 adults + 2 children – £160.00 2 adults only Deluxe Room – £170.00 Elephantastic Weekend – family weekend break with zoo tickets 2 adults – £186.00 2 adults + 2 children – £230.50 HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/201 9 · PAGE 13
Good News Stories CHANCE MEETING! by Brett Martin Imagine this scene, the sun is shining, the bands are playing on stage, thousands of people dancing, laughing and having fun. Where are we? Glastonbury? No remember I said it was sunny day! We are at a phenomenal music festival in East Kent. Bare with me a little more as I describe how two of our beautiful girls met last year. Kerry and Charlotte both met in February 2018 on Day 2 of an AAC session run by Rett UK. Both ladies were awaiting their Eyegaze assessments and they made a connection. Kerry’s mum and dad (Heather and Jerry) and I also met up on some subsequent Tobii Dynavox training after this event, we promised to keep in touch and then failed all by ourselves at communicating! Anyway, let me take you back to the Festival, 5 miles from where Charlotte lives and two hours from where Kerry lives. What were the chances of these two amazing women with Rett meeting up again in a field? Well they did whilst both having the time of their lives at a festival. Whilst neither Kerry or Charlotte had their Eyegaze’s with them, what they did have was their love of music and their huge smiles. What better way to communicate than through the power of music? The festival is specifically organised for those with special needs by three mums, catering for all disabilities and their carer’s. It’s well worth checking out the festival if you think your child could benefit from an experience like this. For further information, visit www.festibility.co.uk. Kerry and Charlotte Brett, Charlotte, Kerry and Heather RETT NEWS · ISSUE TWO/2019 · PAGE 14 HELP SUPPORT US TO HELP SUPPORT YOU
CERY’S FIRST HOLY
COMMUNION
by Michelle Prendergast
My daughter, Cerys aged 8, made her Holy
Communion sacrament in May.
In the lead up to the big day, Cerys had special
time with Father Philip for four weeks on a
Saturday, when Father went through why and
Cerys with Father Philip what First Holy Communion is. School created
Cerys a low-tech pecs book of mass and First
Holy Communion and Cerys used her eye gaze
device to show her understanding with yes and
no options. When answering one of the
questions Cerys said yes and we shocked but
delighted when she then said the word ‘Jesus’!
To see our beautiful daughter in her Holy
Communion dress not only brought us all to
tears but many of the parishioners. Father Philip
did a special speech during the mass to explain
Cerys’s condition and how excited he was to see
Cerys Cerys receive her First Holy Communion.
It was a truly special day for all our family and
friends to witness Cerys taking part in this holy
sacrament, together with all the children in her
class from her mainstream school (which she
attends one day a week).
We are incredibly proud of Cerys. She was a
true star.
Cerys and her friends
We’d love to hear more of your stories. Please
share your daughter or son’s good news stories
or achievements with us here at Rett UK.
Cerys with mum, Michelle and dad, James
HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/201 9 · PAGE 15The Britten’s Tea Party
Connecting families
– reducing isolation
Michael and Wendy Britten, whose was worthwhile and helpful to all the
22-year-old daughter Sarah has Rett parents there and also to the carers who
syndrome, have held a tea party for accompanied some of the children.
families at their lovely home for the There was food of plenty and relaxed
past 16 years. Here they report on this places to eat it together around the
year’s event. outside tables!
On Sunday 19th May, Wendy and Michael A particular concern that worried the
Britten hosted several families at their home parents with young teenage daughters
in Rockhampton, South Gloucestershire. was the matter of ‘Transition’ – How do
Altogether 19 people attended. Happily services and funding change between
the weather was very good and everyone children and adult care? Will continuity
sat outside in the large, walled garden, of care be lost? What is the process to
with the more active children able to go go through to ensure there will be
off and around and enjoy the various continuity and the appropriate services
things there like the trampoline, slide, available? It was agreed that this was an
and toboggan run, whilst parents talked area where valuable advice could be
together. Some had visited before in provided by contacting the RETT UK
previous years and some were new, but head office with their concerns.
all enjoyed getting to know others and Many thanks Michael and Wendy for
sharing their concerns, and offering your continued support in holding this
advice where they could. The afternoon annual event in your home.
Families enjoying the afternoon
RETT NEWS · ISSUE TWO/2019 · PAGE 16 HELP SUPPORT US TO HELP SUPPORT YOUNorth London
Support Group Picnic
by Lorna Jaffa
This year we met on 7th July. We decided to
hold a picnic instead of the usual BBQ. Everyone
brought their own food and it allowed more time
to talk to each other.
35 people attended from 11 different families.
The main purpose of the support group is to
help each other with our collective experiences
and knowledge. Chairs were set out in a huge
Adriana Peillajo and dad, Nelson circle to aid opportunities to chat.
One example of helping each other was when
one family said, that although the local authority
had given respite care for a fixed number of days
per year, they were unable to provide a place for
any days at all. This is really unacceptable and
despite representations no place was found.
Another family had a good placement for their
daughter outside the borough. The first family
left armed with the details and the hope is that
Minati Das and Asma Bukari there will be successful respite care very soon.
The gatherings are informal and lots of
information is exchanged and friendships made.
We were pleased to welcome for the first time
the Inge family, who have moved to London.
Adriana, age 24, came to the picnic with her
mum, dad and brother.
The venue was Mapledown School, thanks once
again to the kindness of Steve Carroll, the
Kerry Henderson and Ieuan’s mum Ann Maria Headteacher, The wonderful selection of adapted
bicycles are always well used and the zip wire
was enjoyed by people with Rett, sibling and
their parents!
Unfortunately Jessica Campbell and her family
were unable to attend as Jessica’s birthday party
was at the same time. We were also delighted to
see Erika and Katie Symes as this will be their
last Rett gathering before they relocate to
Switzerland. We wish them both good health
Gabriella Bardon enjoys the zip wire and happiness in their new life there.
HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/201 9 · PAGE 17Rett UK Clinics Survey
Many thanks to everyone who • 58% of respondents were told who
completed our clinic survey. would be in attendance
The clinics are held at The Evelina • Two respondents were not aware or
asked at the time whether they
Children’s Hospital, London (twice a
wanted a member of Rett UK present
month, under 19’s), The Nottingham City
Hospital (twice yearly, under 19’s), The • 75% of respondents were given
Royal Manchester Children’s Hospital, information about how to get there,
(twice yearly, adults only – despite it parking etc.
being a children’s hospital) and St David’s • 80% of the time someone from Rett UK
Hospital, Cardiff (twice yearly, normally was in the meeting which the large
just adults). majority of families found really helpful
We had 60 responses.
Felt at ease with a familiar friendly
Clinic respondents attended: face and was directed and informed
• 61% The Evelina Clinic by Julie.
• 15% Nottingham Great to have Becky there as she
• 12% Manchester could offer support and signpost
us to services. Also, she was able
• 12% Cardiff to offer her own experiences with
Number of times respondents her daughter.
were seen: Just felt reassured that someone was
• 55% only once there that understood what our
• 20% twice daughter was about and how things
was for us as a family.
• 25% more than twice
How long did people have to Who else was present?
wait for the appointment? • Neurologist 48%
• 22% less than six months • Physiotherapist 69%
• 42% between 3 & 6 months • Speech & Language Therapist 59%
• 19% more than 6 months • Occupational Therapist 60%
• 17% were not sure • Geneticist 15%
Information given prior to • Dietician 1%
the appointment: How many people got reports
• Information given prior to the after the clinic?
appointment varied with only 42% 84% of respondents did get a report
being given a pre-clinic questionnaire after the clinic.
RETT NEWS · ISSUE TWO/2019 · PAGE 18 HELP SUPPORT US TO HELP SUPPORT YOUWhat did people get out of the clinic? It was also suggested by a couple of
Most people found the clinic appointment families that it may be helpful for Rett UK
very helpful. to hold a less formal meeting just with
the family outside of the clinic meeting
As a result we have made so much to discuss general support issues.
progress with significant problems …
we are now coming to London to see There were a lot of professionals in the
a spinal expert and getting help around meeting which could be overwhelming.
phobias … also support around O2 I wonder if Rett UK could run their
levels and sleep and breathing - I own advice/information clinic in
cannot say how life changing this adjacent to the Rett clinic so before
session has been and to know there or after the appointment you could
are experts that really understand the discuss worries and concerns in a
big picture. Thank you. x more informal way. The Rett UK
representative could then feed this
The team were all very helpful and back to the medical team if appropriate
gave great advice and support. or provide advocacy support during
It is so important to us as they know the clinic if a family thought this
so much about Rett Syndrome where would be useful. This would also be a
other people have not a great deal of better time to give information about
knowledge if any it’s very reassuring support from Rett UK as opposed to
to have a specialist who can get in the meeting itself.
things done.
Rett UK explain things well and in As a result, our recommendations to
layman’s terms rather than just in the clinic teams and for our review are:
medical jargon. They also add in things • That everyone attending any of the
that we as parents may forget to ask. clinics is given information beforehand
about how to get there, parking, who
But not everyone got the follow up will be in attendance and what to
report or found that advice given at expect from the meeting
the clinic was taken up by the local • Everyone will know that a member of
teams. They then found it hard to get Rett UK will be present (unless holidays
the recommendations implemented. or absences prohibit this) but they
only sit in the clinic meeting if the
The clinic staff were nice and reassured family want them to
us about what we were doing, however, • All families are given a pre-clinic
there was nothing they could really questionnaire to complete and return
help with in terms of symptoms that to the clinic team prior to the meeting.
were not being addressed. This is important not only to prepare
Report after the visit was too brief the clinic team about what the current
and nothing was taken into issues are but for the family to focus
consideration from professionals on what they want to ask. This is only
towards EHCP. Parents were asked to shared with Rett UK if permission is
ask questions, but it was too given on the pre-clinic questionnaire
overwhelming at that stage and we
were not sure on what to ask.
Continued overleaf
HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/201 9 · PAGE 19• That everyone receives a
report afterwards with the NHS ENGLAND
recommendations from the
clinic team, which is they ALERT CARDS
shared with the family’s local
team for implementation. The Can you help?
report can be shared with NHS England have announced plans to
Rett UK if the family give give every patient with a rare disease an
permission to do so and Rett alert card, which would include information
UK can help to see that those about their condition, treatment regime
recommendations are and contact details for the individual
followed up. Rett UK can refer expert involved in their care.
back to the clinic team if they
“We know that many patient organisations
are not been put into place
have had experience of developing and
by the family’s local team
implement alert cards within their own
• That every effort should be community. In order to improve the
made to have a full service offered by NHS England, we are
multidisciplinary team looking to collect information on your
present at each of the clinics previous experiences of alert cards, what
We would like to see some of their successes have been and what could
the clinics running more often have been done better. We will then feed
and also to have a clinic in this back to NHS England to ensure they
Scotland. Each develop a service that works for both
clinic should families and individuals living with a rare
also have its condition and medical professionals.”
own If you have had experience of using an
information alert card or have any thoughts on what
leaflet. We are they should contain, please email
working on all tom.bilins@geneticalliance.org.uk
of these things. detailing the following:
We will do 1 The format of your alert card. Is this a
another credit card size information leaflet, a
review in bracelet with a USB attachment, an A4
12 months pamphlet etc.
to see
2 Was there any particular problem you
what has
were trying solve with your alert card?
changed.
Many 3 The experiences of using the alert card.
thanks to What has worked well?
everyone 4 Any improvements you would make
who helped with the benefit of hindsight?
with the review. 5 Any broader comments you would
make about NHS England’s plans?
RETT NEWS · ISSUE TWO/2019 · PAGE 20 HELP SUPPORT US TO HELP SUPPORT YOUOther People’s Reactions Improving emotional
resilience and
empowering families
Some people react in strange ways the first time they meet someone with a
disability, because it’s new to them and they don’t know what to do. Most people
will be surprised by their own reactions.
Some people will:
• Stare
• Be shocked, confused, unsure or afraid
• Curious
• Ignore the child/adult with a disability
• Offer to help you or the child/adult with a disability
• Avoid you
All of these reactions can make you and the person with a disability feel uncomfortable.
It can be confronting and confusing for all involved. Some parents end up seeing
less of their friends or family because of their reactions to a child/adults’ disability.
How you feel about other people’s reactions can be changeable depending on
how you are feeling or what’s happening in your life. Sometimes other people’s
well-meaning questions are preferable to a stare, other times you might feel that
strangers shouldn’t be so rude.
HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/201 9 · PAGE 21As well as the child who has a disability, • Ignore and block out: There are times
other people may be affected by the where it just feels too hard to say or
reactions of others including parents, do anything, At times like this try to
other carers, brothers and sisters, friends think of something else – your
and other family members. favourite TV programme, a poem,
Someone’s reaction can happen at what’s for dinner tonight anything
school, at the shops, at public events, that would help take your mind off it
within family or friends’ homes, in fact • Walk away: If you find people are being
anywhere you may be meeting new extremely difficult or you are finding it
people. hard to control your emotions, you may
prefer once in a while to walk away
Coping strategies
• Positive Body language: This helps
Different situations call for different
communicate your message, so make
measures but here are some coping
eye contact, smile, stand upright with
strategies that other families find useful:
your shoulders back and head held
• Reassurance: A smile or nod to high. A calm and controlled voice and
acknowledge someone is often a few expressive hand movements can
enough to break an uncomfortable also make a difference
stare. It gives off the message
Having something to say or do allows you
“we’re ok”
to respond to other people’s questions,
• Distraction: Distract the other person. comments and curiosity. It also provides
Chat about your child/adult (but not role models and demonstrates (especially
about their disability) or talk about to children), that other peoples’ reactions
something you have in common can be managed which is very positive.
• Explain: This can both reassure and
Finding support:
educate other people. They may react
differently and more positively in the Different support may be needed at
future and it can be a helpful way to different times in you and your child/
dispel assumptions people may make adults’ life. There is nothing wrong with
about your child based on their seeking support – in fact it enables people
appearance or behaviour. Keep an to cope better. Talking to a friend or support
explanation short and simple e.g. group worker and meeting other families
“Sally was born with Rett syndrome with similar experiences can help ease
which is why she is in a wheelchair/is worries and isolation. It can also be helpful
short for her age/sometimes dribbles.” for siblings to meet other children who have
You can move the conversation on by a sister or brother who has Rett syndrome.
then talking about something else Siblings:
• Use humour: Humour can break It is important that brothers and sisters
tension and put people at ease. It can have an understanding of their sibling’s
be a useful tool if people are making medical condition as they may need to
inappropriate comments e.g. “Gosh explain to friends and peers, especially
thank you we hadn’t noticed.” if they get asked questions or other
• Be assertive: Stand up for yourself children make comments. A child’s
without being aggressive e.g. “My disability should never become a taboo
daughter has Rett syndrome and subject within a family as this gives off
you staring at us doesn’t help.” then unhelpful messages and can foster
move away unnecessary worries and concerns.
RETT NEWS · ISSUE TWO/2019 · PAGE 22 HELP SUPPORT US TO HELP SUPPORT YOUSounds overwhelming… how do I start?
Take things one step at a time: RADAR
• Think of a time when you have
responded the way you wanted to
KEY
with another person’s reaction The National Key Scheme (NKS)
offers disabled people independent
• Go easy on yourself; take each day as
access to locked public toilets
it comes
around the country. Toilets fitted
• Practise something you’d like to say in with National Key Scheme (NKS)
front of a mirror or in the shower locks can now be found in shopping
where no one can hear you centres, pubs, cafés, department
• Some suggestions will work better for stores, bus and train stations and
you than others. It sometimes many other locations in most
takes a while to find what works best parts of the country.
for you in different situations For further information about the
• Carry some small cards that have scheme, please visit
a brief explanation. Rett UK www.disabilityrightsuk.org/
have some generic ones shop/official-and-only-genuine-
you might like to use so radar-key
please contact us if you Please note: Although there is
would like some. Should some variation to keys in some of
you choose not to respond the changing place toilets in
verbally to a stare or particular with which system they
question, you can give use – a few are radar keys but
someone a card instead. others where you need to collect
It might read something a key from someone and others
like this “Rebecca has Rett where you need to register as a
Syndrome which is why user via the council who then
she looks and behaves a send a key or access code.
little differently to you and
I. Next time you see us why
not smile and say hello.”
Managing other people’s
reactions can be difficult but
we have a choice in how to
deal with it. In the long term,
positive attitudes, good
communication skills and
caring and supportive friends,
families, support groups and
health professionals are the
best aids to coping with life.
Please contact us on
01582 798 910 and speak
to one of the support team
if you would to talk any of
this through.
HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/201 9 · PAGE 23Congratulations to
Dr Gillian Townend on
her Academic Success
On 4th July Dr Gill Townend was awarded her
PhD following the successful defence of her
thesis at Maastricht University, in front of an
academic assessment panel and an audience of
around 60 colleagues, friends and members of
her family. Callie Ward and Abigail Davison-Hoult
were there to cheer her on, on behalf of Rett UK,
and enjoyed getting to know some of the
families from the NRSV (Dutch Rett Syndrome
Association) at the defence and reception and
the party in the evening, as well as meeting with
Gill and her Dutch colleagues in a warm and sunny
Maastricht the following morning to discuss ideas
for future collaborations.
Gill’s thesis is entitled Rett syndrome:
understanding the communication challenges,
needs and potential of individuals living with a
rare disease and is the culmination of her
research from the past five years, while working
at the Rett Expertise Centre Netherlands. The
293-page thesis is available as a free download
from the University of Maastricht, using the
following link: http://dx.doi.org/10.26481/
dis.20190704gt
Top left: Gill giving her presentation at the start of the defence; Below: Gill with colleagues from the
Rett Expertise Centre Netherlands, the NRSV (Dutch Rett Syndrome Association) and Stichting-Terre
(Dutch Rett Syndrome Foundation). Also Caroline Lietaer from Rett Syndrome Europe and Dr Anne-Marie
Bisgaard from the Danish Rett Expertise Centre
RETT NEWS · ISSUE TWO/2019 · PAGE 24 HELP SUPPORT US TO HELP SUPPORT YOUSIGN UP FOR
OUR MONTHLY
E-NEWSLETTER
Keep up-to-date
with the latest
research news from
around the world
Subscribe free to our
monthly E-Newsletter via our
website and direct to your inbox
when it is published.
Gill, Callie and Abigail and the big certificate!
Full of information on support,
fundraising and events that might
be of interest, we hope that the
E-Newsletter will be a good way
for you to remain up-to-date.
Information will have
hypertext links through which
you can find out more or read the
full content.
As with all our services,
we welcome feedback and
any ideas you have for
Gill with her PhD supervisors, Prof Dr Leopold Curfs future issues.
(Maastricht University, NL) and Dr Peter Marschik
(Medical University of Graz, Austria) Sign up at
For anyone preferring a shorter read, Gill www.rettuk.org
is producing a short booklet giving an
overview of the thesis and this will soon
be available to
download from the
Rett UK website,
together with a E-NEWS
video of Gill giving
a 15-minute slide
presentation
summarising her
thesis at the start
of the hour-long
defence
ceremony.
Gill’s PhD thesis
HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/201 9 · PAGE 25Rett UK Communication Maximising the
and Education Support communication
potential of people
Update with Rett syndrome
by Dr Gill Townend and Callie Ward
As Rett UK’s Communication and families have the opportunity either to
Education Support Team we are (1) try out a communication device, for
continuing to make great strides in all example, eye gaze technology, which
we are doing. Here is a snapshot of they can take away on loan, or (2) bring
events we have organised in the last their own communication device if they
few months and those that are have questions and need support. In
planned for the rest of the year: some cases, these devices have been
used for playing games without families
Two Day Communication Training realising that language systems are on
Two-day communication training there. Being able to show them the
(AAC – Alternative and Augmentative language systems and how to use them
Communication) events were run has opened up a world of communication
successfully in Chichester in May and in they didn’t realise they already had access
Cardiff in July. It was exciting to see to on their device.
both adults and children with Rett
The remaining two-day Communication
syndrome make progress in learning to
Training (AAC) events are:
use alternative methods of communication.
These events aim to train up parents, SCOTLAND
carers and professionals during Day 1, Stirling
with Day 2 offering communication 19th and 20th September
groups for the person with Rett
ENGLAND
syndrome to attend along with their
Herts, Beds & Bucks
family members/carers/professionals.
28th and 29th November
During Day 2 the individuals and their
Practising Communication – West Sussex Training
RETT NEWS · ISSUE TWO/2019 · PAGE 26 HELP SUPPORT US TO HELP SUPPORT YOUThe RCC training weekend; Inset: A sweet treat from Abigail Regional Communication Events Tobii Dynavox – who all led workshops In recent months, Regional on their eye gaze devices, software and Communication Support ‘Coffee and language programmes. The weekend Chat’ sessions and ‘Out and About’ included a challenging AAC lunch at a Communication groups have been held local café where all of the RCCs and in the London/Essex, Midlands and workshop leaders communicated by Herts, Beds & Bucks regions. using eye gaze devices and other AAC As a team we are continuing to expand techniques such as partner assisted our network of Regional Communication scanning throughout the lunch – to talk Champions (RCCs) to support these through the menu options, choose and events and in June the first residential order lunch and to chat. A real ‘eye- training weekend for RCCs was held at opening’ experience for us all. the Old Palace Lodge in Dunstable. The Following on from the RCC training Old Palace Lodge staff were extremely weekend, we are delighted to be welcoming and hospitable, and the starting up new regions with upcoming weekend was a great success. Callie and Communication Support ‘Coffee and Gill led the training and were joined on Chat’ sessions and ‘Out and About’ Saturday by advisors from three Communication groups planned for communication aid companies – Mark Kent/Sussex, Berkshire/Surrey, North Street from Liberator, Daisy Clay from East and Scotland, as well as the Smartbox and Jeniffer De Almeida from existing regions. HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/201 9 · PAGE 27
Future Dates: at bowling alleys, museum, or even
farms. If you know somewhere you like
Communication Support to go, let us know. We are always open
‘Coffee and Chat’ Sessions to suggestions.
These are designed as a space for It doesn’t matter where you are with
parents and carers to talk together and your communication (AAC) journey –
get support for using the different whether you are new to this or more
communication methods they may need experienced. This is a great opportunity
for the person with Rett syndrome they to meet others and have fun together.
are supporting. Some people may be
completely new to all of this, others may OCTOBER
be further along their journey. The ‘Coffee Berkshire/Surrey
and Chat’ sessions are a chance to ask 5th October
your questions! They are usually held in www.rettuk.org/berkshire/
friendly garden centre café settings. surreyoutandabout
This event is not designed for the
person with Rett syndrome. There are London/Essex
separate ‘Out and About’ Communication 6th October
groups for them to attend and to www.rettuk.org/london/
practise communication. essexoutandabout
SEPTEMBER Kent/Sussex
Kent/Sussex 9th October
11th September www.rettuk.org/kentoutandabout
www.rettuk.org/kentcoffee Scotland
18th October
Herts, Beds & Bucks www.rettuk.org/scotlandoutandabout
16th September
www.rettuk.org/hertsbedsbuckscoffee North East
19th October
Berkshire/Surrey www.rettuk.org/northeastoutandabout
20th September
www.rettuk.org/berkshirecoffee Midlands
27th October
London/Essex www.rettuk.org/midlandsoutandabout
25th September
www.rettuk.org/londoncoffee For booking onto these events and
more information on upcoming
Midlands
Communication Training days (AAC),
26th September
‘Out and About’ Communication
www.rettuk.org/midlandscoffee
Groups and ‘Coffee and Chat’ sessions
keep an eye on the Rett UK Facebook
‘Out and About’ Communication Groups page as well as the Rett UK website
Come along with the person with Rett events page www.rettuk.org/events/
syndrome you support to practise and use the ‘communication’ filter. You
communicating in real life situations can also call the Rett UK office and the
with other people who also understand support team will help you to book a
These ‘out and about’ groups may be place 01582 798 910.
RETT NEWS · ISSUE TWO/2019 · PAGE 28 HELP SUPPORT US TO HELP SUPPORT YOUNetwork for Speech and
Language Therapists Sharing good
practice
Working with People
with Rett Syndrome
Following the launch of our UK-wide
Network in November 2018, there have About the Network
been three webinars so far in 2019:
This network is for all SLTs/SLT
MARCH 2019 assistants who work with children
A parent’s perspective on implementing and/or adults with Rett syndrome,
AAC (with Abigail Davison-Hoult and in any setting, with any level of
Dr Gill Townend). experience, in any region of the UK.
MAY 2019
Assessing language and cognitive skills
Sign Up
of people with Rett syndrome, Part One Sign-up for the webinars to find out
(with Callie Ward and Dr Gill Townend). more about ways of working with
and addressing the communication
JUNE 2019
challenges (and communication
Assessing language and cognitive skills
potential) that are associated with
of people with Rett syndrome, Part Two
Rett syndrome.
(with Callie Ward and Dr Gill Townend).
If you can’t attend a ‘live’ webinar,
no need to miss out – simply sign up
Further webinars and North/South to receive a link to the recording.
study days are planned for Autumn
Come along to the study days for
2019, including a guest webinar given by
presentations of the latest research
Jennifer McComas from the USA.
and discussion of case studies.
Find out about the new international
communication guidelines for
Rett syndrome.
Fill in the registration form and we
will add you to our mailing list to
keep you updated about future events.
For more information and to join the
MEMBERSHIP network, please visit
www.rettuk.org/SLTNetwork
IS FREE!
HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/201 9 · PAGE 29Research Update
GW Research initiates a clinical trial of cannabidiol in
Rett Syndrome
GWP42003-P (cannabidiol) is believed to affect several pharmacological pathways
and may have the potential to modulate some of the pathophysiological mechanisms
thought to underlie the neurobehavioral deficits present in Rett syndrome including
excitatory/inhibitory neuronal imbalance, neuroinflammation and antioxidant
dysfunction. The aim of the clinical trial is to evaluate the safety and efficacy of
GWP42003-P in reducing symptom severity in females, aged 4 to 18 years, with
Rett syndrome. Symptom severity will be evaluated using caregiver and clinician
measures that assess multiple symptoms and therefore reflect the overall condition.
Measuring changes in seizures frequency or severity is not, per se, a key objective
of the trial. Several safety outcomes such as side effects, vital signs, lab assessments
and tests will be analysed.
The effect of two doses will be compared with a placebo control across a 24-week
treatment period. Patients completing the study will have the opportunity to take
part in a 6-month extension study where all patients will receive GWP42003-P. In
total, approximately 252 patients are expected to be included.
One of the eligibility requirements is for patients to refrain from taking medicinal
cannabis, cannabinoid-based medications or cannabidiol oral solutions for at least
3 months prior to screening in the study. The full list of eligibility criteria can be
found on clinicaltrials.gov [ClinicalTrials.gov Identifier: NCT03848832].
UK trial sites in Liverpool and in London are expected to open in June and July
2019 respectively.
For further information, please contact Reverse Rett:
Tel: 0161 434 0585
Email: rachael@reverserett.org.uk
In early October 2018, it was reported that 70% of those involved (from around
100 patients) experienced clinically significant improvements in their apneas.
H OH
H
HO
RETT NEWS · ISSUE TWO/2019 · PAGE 30 HELP SUPPORT US TO HELP SUPPORT YOUMyths about Increasing
Rett Syndrome knowledge and
understanding of
Rett syndrome
Dr Daniel Lumsden presenting at
The Managing Complex Neurological
Disorders in the Community conference
in Birmingham.
Dr Daniel Lumsden is a Consultant Paediatric
Neurologist, Guy’s and St Thomas’ NHS
Foundation Trust and Paediatric Neurosciences,
as well as at the Faculty of Life Sciences and
Medicine, King’s College, London.
Dr Lumsden works at the Evelina London Children’s
Hospital (ELCH) and is the current Chair of the
Movement Disorder Specialist Interest Group of
the British Paediatric Neurology Association.
Daniel’s clinical and research work has focussed
on the management of movement disorders in
childhood. He is one of three Consultants in the
Complex Motor Disorder Service at the ELCH
Dr Daniel Lumsden which provides a national referral service for
Deep Brain Stimulation in Childhood and is also the clinical lead for the Rett
Service at the ELCH. Daniel has a particular interest in improving the recognition of
movement disorders in children and has taught widely on this topic.
The topic of his presentation was to bust some of the myths about Rett syndrome.
We are pleased to be able to share with you a brief synopsis of this presentation,
and the full version will be available via our website shortly.
CHANGES TO OUR WEBSITE
We have made some changes to our
website to help you find things more
easily. We have removed the membership
section so you no longer have to log in
to view certain things e.g. presentations
VISIT OUR WEBSITE AND from Regional Roadshows and back
SEE WHAT HAS CHANGED issues of Rett News.
Why not take a look!
www.rettuk.org
HELP SUPPORT US TO HELP SUPPORT YOU RETT NEWS · ISSUE TWO/201 9 · PAGE 31MYTH 1
Rett syndrome = Mutation in the MECP2 Gene
A mutation in MECP2 is insufficient for diagnosis of Rett syndrome.
A period of regression followed by stabilisation is mandatory. Deceleration in head
growth should alert a clinician to possibility of diagnosis.
Clinical Diagnosis
Required for typical or classic RTT:
• Period of regression followed by recovery or stabilisation
• All main criteria and all exclusion criteria
• Supportive criteria are not required, although often present in typical RTT
Required for atypical or variant RTT:
• Period of regression followed by recovery or stabilisation
• At least 2 of the 4 main criteria
• 5 out of 11 supportive criteria
Main Criteria Supportive Criteria for Atypical RTT
1. Partial or complete loss of 1. Breathing disturbances
acquired purposeful hand skills. when awake
2. Partial or complete loss of 2. Bruxism when awake
acquired spoken language. 3. Impaired sleep pattern
3. Gait abnormalities; impaired 4. Abnormal muscle tone
(dyspraxia) or absence of ability.
5. Peripheral vasomotor disturbances
4. Stereotypic hand movements such
6. Scoliosis/kyphosis
as hand wringing/squeezing,
clapping/tapping, mouthing and 7. Growth retardation
washing/rubbing automatisms. 8. Inappropriate laughing/
screaming spells
10. Diminished response to pain
11. Intense eye communication –
“eye pointing”
CHANGE OF DETAILS?
Don’t forget!
If you move home, change your phone
number or email address, please notify
us by emailing donna.tinch@rettuk.org.
Thank you!
RETT NEWS · ISSUE TWO/2019 · PAGE 32 HELP SUPPORT US TO HELP SUPPORT YOUYou can also read
