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Report
from the Chair
The
Dyspraxia Foundation had a challenging but exciting year, which involved
far-reaching changes as well as many positive developments and successful
projects. The Executive Committee worked hard to complete projects and goals
that it set at the beginning of the year, to support members and the public and
to improve awareness of dyspraxia. Events
Our various events promoted the Foundation and were sources of
information to the public and professionals. Our conference in October 2001, 'Adolescence into Adulthood' provided
information and help for professionals and parents and for those who have
dyspraxia. Feedback from the 120-plus delegates was excellent. I would like to
thank Tricia Pullen, Chair of the Conference Committee and her team and Mary
Colley, our Adult Advisor for their hard work. The conference ' Talking
about Dyspraxia' took place in Edinburgh in March 2002. This was the final part
of a project to improve awareness in schools in Scotland, funded by the Scottish
Executive and managed by AFASIC in collaboration with the Foundation. One of the
project�s goals was the publication and distribution of guidelines for
teachers. These have now been forwarded to every school in Scotland. At least
8,500 children with dyspraxia will benefit from this practical guidance.
Congratulations to Jim Munro and Graham Robertson for this great achievement. Local
network
Our
local groups are our eyes, ears and voice.
Our network of more than 30 local groups and almost 60 local and adult
telephone contacts continue to raise awareness and to support those who have
dyspraxia and their families around the UK.
The groups� enthusiasm and energy seems endless: they circulate
leaflets and organise fundraising events, computer and gym clubs, coffee
mornings, outings, talks, conferences, workshops and events. Kim Hobson, the
Foundation�s Local Co-ordinators� Representative has consulted local groups
and worked closely with the Structure Committee to improve the way we support
our representatives, within guidelines from the Charity Commissioners. Following
advice from the Charity Commissioners, our flagship group in Nottinghamshire
registered as an independent charity. Congratulations
to everyone in this busy group, now called Dyspraxia Connexion, which continues
to offer a high level of support and services in the local area.
We look forward to working together on joint initiatives throughout the
coming year. Raising
awareness
Raising awareness is the key to increasing the profile and understanding
of dyspraxia. The Hitchin office
continued to be as busy as ever. During the last year our hardworking team
have responded to more than 5,000 telephone calls and replied to more
than 3,500 emails. They have distributed 5,300 information packs and dispatched
1,600 specialist books whilst collating a database of over 7,000 contacts.
The Foundation�s website
www.dyspraxiafoundation.co.uk was updated by Ben James as part of his
A-Level project. We have received
many positive comments on the new site and extend our thanks to Ben for an
excellent job. The Hitchin team, volunteers and local co-ordinators manned awareness
stands at conferences and exhibitions whenever the opportunity arose.
Regular visitors to the Special Educational Needs Exhibition in London
are familiar with the Dyspraxia Foundation stand, which is small but busy.
The 3-day exhibition in November 2001 attracted over 16,000 visitors. I
am particularly grateful to all those who represented us at this important event
in the Special Needs calendar. There was a rise in publicity for dyspraxia on radio, television and in
the local and national press. On
Radio Four, both Woman's Hour and Case Notes featured Foundation members,
Trustees and advisors talking about dyspraxia in childhood through to adulthood.
The feature in the Daily Telegraph about Nicky Brice, an adult with dyspraxia
generated a huge number of enquiries to the office and to the Adult Support
Group. Recent press interest has
focused on the research by two of the Foundation�s Trustees into the benefits
of essential fatty acids. Two million children watched the episode of CBBC�s Byker Grove in
which teenage twin Luke was diagnosed with dyspraxia. Viewers posted positive
comments on the online message board where the programme makers provided
information about the condition. Luke's story is set to continue so watch out
for the return of Byker Grove in the autumn. Changes
During the year the Foundation reviewed the range of services that our
members need and looked closely at ways to improve our channels of communication
with members and the groups that we serve. As a result our new membership
structure offers a range of packages and benefits to different types of member. On 1 April 2025 we launched individual, associate, professional and
corporate categories of membership. Benefits
of the new professional and corporate membership categories include subscription
to the forthcoming annual Professional Journal: future editions will incorporate
a list of registered subscribers. The Foundation�s new General Council will include all the co-ordinators
and advisors as well as the Executive Committee. There has been extensive
liaison with the co-ordinators to ensure that all their needs will be met.
The Council will meet twice a year to make sure that we all stay in touch
with each other and are kept aware of aims, goals and happenings. We
are committed to supporting everyone who has dyspraxia and have a flourishing
Adult Support Group. A Special
Resolution, put to the AGM ensures that we always have a Trustee who has special
knowledge or experience of dyspraxia in adulthood. Publications
We are grateful to the Jade Team of the Industrial Society's Runge
Effective Leadership Programme for re-designing our leaflet, Dyspraxia
explained. This is a useful
introduction to what dyspraxia is and where to go for help. Thank you to the
team for selecting the Foundation as the focus of their project and for
producing an excellent publication to add to our resources. Dyspraxia News replaced our regular magazine Midline. Distributed in the
spring and autumn to members, local groups and those with an interest in
dyspraxia, the new format includes news, latest research, education and medical
issues and dedicated pages for teens and adults. Dyspraxia News has proved
extremely popular with parents and professionals alike.
We
continue to be a source of specialist publications and fact sheets about
dyspraxia. Recent additions to our
list include Helping Children Cope with Bullying by Sarah Lawson and Inclusion
for Children with Dyspraxia by Kate Ripley.
Working closely with our Adult Support Group, we added to our literature
for adolescents and adults the following information sheets: Dyspraxia in the
Workplace- A guide for employers; Dyspraxia in the Workplace � Help and
guidance for jobseekers and employees; and Driving � A guide for those with
dyspraxia. Fundraising
During the year John Buckle, our part-time fundraiser continued to
secure essential core funding to meet the increasing demands made on us.
Thanks to the generous support of The Eveson Charitable Trust and the
Lloyds TSB Foundation for England and Wales, we were able to fund a Regional
Development Officer for the West Midlands area. Janet Stephen has supported
local groups and raised awareness of dyspraxia particularly among the ethnic
communities. As Janet said,
'I can see there is a job for a 'me' in every region in the country!'
Sadly,
John has left us to take up a full-time post with the Birmingham Foundation. We
take this opportunity to thank him for his hard work and commitment and for his
vision, which gave us the impetus to develop our membership and newsletters.
John is kindly continuing to organise our participation in the London 10K
Road Race 2002. Last year our seven
intrepid runners raised over �2,500 in sponsorship. We gratefully acknowledge the following companies and trusts for their
kind donations during the year:
Rowan Charitable Trust
Good Neighbours Trust
S Peake Charitable Trust
KPMG Baron Davenport�s Charity
The John Avins Trustees
Pedmore Sporting Club Ltd Woodroffe Benton Foundation Edgar E Lawley Foundation
Rathbones Investment Management Oakley Charitable Trust
Enid Blyton Trust
The Brocton Trust Wesleyan Charitable Trust
The Mercers�
Company Walter Farthing
(Trust) Ltd Wyvill Charitable
Trust Thomas Roberts
Trust The Steel
Charitable Trust The Whitbread 1988
Charitable Trust People
Our Honorary President Catherine Bailey gave us valued support during
her two-year term of office. Catherine
has handed over the reins to Denise Robertson, whom we warmly welcome.
Denise is a familiar face on Granada Television's This Morning programme
and is a well-known novelist and journalist. She has presented the Foundation's
two radio appeals and we look forward to working with her in the future.
Patrons Dr Ian McKinlay and Dr James Appleyard continue to support the
Foundation whenever their busy schedules permit. We are delighted that they have
both accepted an invitation to chair our two-day conference for professionals in
September. Essential fatty acids, present in fish oil are essential for normal
brain development and function. Two
of the Foundations trustees, Dr
Alex Richardson and Dr Madeleine Portwood are involved in a study of primary
school children which will determine whether essential fatty acids can help
those who have dyspraxia. The
Foundation�s trustees are indebted to the Hitchin team for their continued
hard work and commitment. This year we have been pleased to recognise their
dedication by appointing Eleanor Howes as General Manager, Janet Hayes as her
Personal Assistant and Elaine Rogers as Membership Secretary. In March we
welcomed Jane Trowbridge as Clerical Assistant and last month, the newest member
of the team Andrew Coutts, our National Fundraiser. We also extend our sincere
thanks to regular volunteers Carolyn Marsh and Jeremy Cave who keep our
financial records in order. Future
plans
On behalf of the Foundation, Madeleine Portwood has conducted a survey
of all the universities and colleges to find out what support they provide for
young people and adults with dyspraxia. We
will shortly publish the results, which we hope will encourage good practice in
higher education institutes. As this Annual Review goes to press, the Foundation launches its
Professional Journal. Published annually, the Journal will disseminate current
practices, research and facilitate continuing education for professionals
working with children and adults with dyspraxia. The Journal is dedicated to the advancement of professional
work in dyspraxia through critical review and through clinical application,
education of practitioners, research and management of services. Over the next year we plan to work even more closely with teenagers and
adults who have dyspraxia. With the
teenage group of Dyspraxia Connexion, we intend to offer adolescents the
opportunity to receive a free newsletter written specifically for and by teens.
To build on the changes already planned for greater representation of
adult issues on the Executive Committee we will appoint volunteer Adult Co-ordinators.
This September we host a two-day conference for professionals which will
build on the success of our 2000 Conference held in Durham. 'Theory into
Practice' will include latest research presented by Dr Alex Richardson and
Professor David Sugden, practical help for primary and secondary education,
physiotherapy, occupational therapy, life skills as well as movement play and an
introduction to gadgets and gizmos! Special
thanks
The Executive Committee, employees, volunteers, advisors, and those on
the various sub-committees have worked tirelessly over the past year to support
and promote the Foundation. My special thanks go to them all, for supporting
both me as Chair and the Foundation as a whole. In particular I would like to
thank Vice Chair, Tricia Pullen; Trustees Richard Yates, Madeleine Portwood, Pam
Williams, Jan Long, Kim Hobson, Mary Colley, Jenny Peterson, Alex Richardson;
and advisors Paul Wassell and Barbara Zanditon.
Special thanks are reserved for Trustee Graham Robertson for his sterling
work with AFASIC on raising the profile of dyspraxia in Scotland. We
rely heavily on the support of volunteers especially our band of hardworking Co-ordinators
and Contacts. Their continued
support is vital to us. This
has been a particularly hard year, which involved periods of consultations and
reviews, which have led ultimately to changes to our structure, publications and
services. I believe that we are now
a stronger, more professional organisation, which remains an essential resource
to parents, professionals and those affected by dyspraxia and their families. Mich�le Lee Living
with the spiky profile
�We have been
through years of knowing that people believe we exaggerate
problems� write Sue and Graham Cook Natasha, our 12 year old daughter, is not a 'typical' child with
dyspraxia (so we are told � but what is �typical or normal?): but we are
sure that some part of her story will ring bells with many of you. When Graham and I started a family in 1989, I was a real career girl.
Because of weight loss and high blood pressure, I was regularly hospitalised in
the Royal Berks and had repeated scans. Birth
was induced at eight months. After three days� hard work Natasha was
born. Her birth weight was low. Unfortunately, two hours after she was born I suffered a critical brain
haemorrhage. I spent the next few months in Intensive Care and underwent major
brain surgery. Everyone was more concerned about my welfare than Natasha's.
I commented to many people about her general restlessness and constant
crying. They always told me that
she was reacting to my being so ill and that she could feel my stress.
Natasha refused to eat anything, but drank a lot of milk.
She never crawled, but at the age of 9 months she stood up and walked. At
10 months she started talking. She threw jigsaws and Lego across the room, but
loved cuddly animals and dolls. Her
imaginative play was wonderful. She
had loads of friends, as her social skills were excellent. We packed our house with corner protectors as wherever she ran (never
walked) she bumped into the furniture and doorways that she had collided with
only minutes earlier. She
experienced some nasty accidents and was always covered in bruises.
Her 18-month check confirmed that she was a very underweight, tall child
who could not do any of the basic building tasks, but could name all the colours.
At no stage did any professionals flag up potential problems.
Everyone predicted a great future for Natasha. Shortly after she started school, Natasha had her check with the nurse.
She was totally unable to build a tower of bricks or do other tasks,
which required basic co-ordination There
followed many appointments with an OT and Educational Psychologist. Finally,
they uttered the word that was to shape the rest of our family's life �
dyspraxia. Ours was the usual parents response
� what, how, when, where, why? We
were thrown a lifeline in the form of the contact details of the Dyspraxia
Foundation. We got in touch with
them straight away and the staff were so helpful. We eventually obtained a
Statement of Special Needs for Natasha. Our emotions were just overwhelming and still are. We have been through
years of knowing that people believe we exaggerate problems �
'probably because Sue is so ill and Natasha is their only child', I sense
them thinking. As
they say dyspraxia is the Hidden Handicap and there is no obvious problem for
those not �in the know�. Natasha
is a bright child and so has a marked 'spiky profile', as the E.Ps have it.
She walked early; she is incredibly articulate and has brilliant social
skills. I have filled out stacks of
forms for researchers about 'your child's characteristics' and I know that mine
will buck the system. Our second breakthrough came when the Dyspraxia Foundation gave me a
contact name for our local Group in Berkshire.
Over the next few years we were active members of the Group: we still
keep in touch, even though we moved from Wokingham to Eastbourne three years
ago. The Group allowed us all to
share our experiences, down times and achievements and helped us more than any
textbook or professional could. With Natasha we tried anything and everything that we read about or was
suggested to us. These included:
cranial osteopathy; sensory integration therapy; neural developmental delay
therapy; audio therapy; fish oil dietary supplements and horse riding. We also
investigated the painting technique. Meanwhile her school maintained a more
traditional approach, slaving over holding the pencil properly. What worked? What would
Natasha have been like if we hadn't done a or b or c?
We will never know. I have
simply stuck to this strategy: if
Natasha agrees to it, it's not invasive, has nice people attached to it, does
not upset her and we can just about afford to do it � give it a try. Natasha
is now 12. The only �therapy�
she has continued with is riding with a local Riding for the Disabled group.
Natasha loves animals and finds that horse riding helps her co-ordination
more than any amount of special needs lessons � and it�s good for her
self-esteem. At school she
has a number of one-to-one lessons and tends to work in small groups. I
had suspected for a long time that Natasha suffers from severe dyslexia and
those suspicions were confined last year. As
she now has to do increasing amounts of academic work, dyslexia with dyspraxia
is proving to be a horrendous combination. She doesn�t just have problems with reading and writing,
but anything that requires sequencing is a nightmare (including telling the time
and dealing with money). Because of
her clumsiness, she hates sport. We
are lucky that her school offers a Theatre Arts course and she loves Drama. She
has gone from being an underweight to an overweight child. Inclusion for a child like Natasha is so difficult. I am always
conscious that low self-esteem can lead to anxiety symptoms, eating disorders
and so on. However, let's not get
too depressing! Perhaps we are
right to 'bumble along'. All we can do is do our best! From the very beginning we decided that as a family
we were going to be very open about our difficulties. I felt it was important for Natasha to know that the problems
she experiences are not her fault and that there is a reason for them.
We wanted friends - hers and ours - and our family to know why she spills
every drink you give her and loses everything.
We believed that the way forward was in raising awareness in the world in general and particularly in our world. Adult
Support Group
The Foundation runs
an Adult Support Group, which represents the interests of adults with dyspraxia.
Helpline 0207 435 7891 Main activities of the Group are: �
support of adults with
dyspraxia �
support of local contacts,
many of whom run groups and raise awareness in their areas �
raising awareness of
dyspraxia in adulthood, among parents of children with dyspraxia, professionals
and the public �
campaigning to simplify
and increase diagnosis of dyspraxia �
organising subsided
conferences on dyspraxia in adulthood for adults with dyspraxia. �
representing the interests
of adults with dyspraxia at conferences and exhibitions �
publishing information
sheets for adults with dyspraxia �
publication of Focus,
bi-annual newsletter for and by adults with dyspraxia �
fundraising to further
these aims and activities Support The Helpline has provided a listening ear, advice and signposting for
hundreds of callers. Many call as their first step in finding out about - and
coming to terms with - dyspraxia. A
lot of Group members belong to the Yahoo Group for adults with dyspraxia, which
provides the opportunity to share experiences online. Contacts around the UK The
Group has more than 20 local contacts. A number of these organise regular
meetings of support groups. During the year new groups started in Staffordshire,
Leicestershire, The West Country and Kent.
Manchester, Yorkshire and London will have their own Co-ordinators.
In some areas, Dyspraxia Foundation groups run which support parents, and
adults. Extensive media coverage Publicity for the work of the Group during the year has included: Mary Colley featured on Case Notes, Radio Four�s popular medical
programme. Janet Taylor, the
Group�s Manchester Co-ordinator featured in the Jewish Telegraph and the
Jewish Chronicle. Nicola Brice,
Group Committee member featured in the Daily Telegraph�s health section.
All of these people raised awareness of dyspraxia and promoted the work
of the Group through their courageous decision to make public their life with
dyspraxia. The Helpline was inundated with calls after each feature. Raising awareness During
the year the Group sent a questionnaire to all Primary Care Groups, asking for
details of facilities and referral points for diagnosing adults with dyspraxia.
Responses are still being received: the Group expects to raise awareness among
the Primary Care Groups and to obtain valuable information about G.P referrals
of adults. Overall we had a poor response to this, although this was not
unexpected. Results will be
published soon. Conferences In October, the Group participated in Adolescence into Adulthood, the
Foundation�s Annual Conference. Mary Colley, the Foundation�s Adult
Adviser and the Group�s Co-ordinator spoke at the conference. Mary also
attended a conference on ADD in Adulthood and spoke at conferences for the
careers service and for adult dyslexics in North Kent.
Janet Taylor, the Group�s Manchester Co-ordinator spoke at conferences
for Occupational Therapists and adult dyslexics in the North West. Janet also
organised a large conference for professionals on adult dyspraxia held in June.
The conference was funded by a grant from the Millennium Awards.
The York Group held a very successful conference in April, organised by
Ruth Hardy. Publications During
the year the Group published two separate information sheets on dyspraxia in the
workplace: one for employers and one for employees. The Group also produced an
information sheet about driving. The
Group�s book Living with Dyspraxia continues to sell well and an updated
edition is planned. The popular newsletter Focus was re-launched under editor Co
Wright. The new look and lively style has been well received by readers. Structure of the
Group The
Foundation has been advised by the Charity Commissioners that some of its
integral groups may have to register as separate charities. During the year the
Group has looked into options for the future. At the same time the Foundation
took steps to ensure that the interests of adults with dyspraxia will always be
represented at Executive Committee level. Future plans The Group�s plans for 2002/03 include: �
organising a conference
about dyspraxia in adulthood. �
running a course on social
skills �
publishing a book about
adults� experiences of dyspraxia �
producing a short leaflet
on dyspraxia in adulthood and a checklist for adults with dyspraxia. �
making our own video on
adult dyspraxia � seeking grants to set up advocacy services for adults with dyspraxia: and to employ a development worker Thank you! Many
people work for the Group, in large and small ways. Often our contributions -
such as participating in a committee, public speaking, organising a meeting -
challenge us severely. Special thanks are due to those who overcome fears and
personal difficulties to contribute to the life of the Group. Members of the
Committee have worked hard to keep the Group on course in its many activities.
As always, the contribution of Mary Colley to the Group has been
immeasurable. Despite serious health problems this year her energy and
enthusiasm have never flagged. Janet Taylor is to be thanked particularly for
her support and dedication to the Group�s aims.
Eleanor Howes and the office staff have supported the Group through this
busy year of change. As
I reach the end of two years as Chair of the Group I am confident that its
message - that dyspraxia is for life - is reaching new audiences and that adults
who have dyspraxia have found their voice at last. Jenny Peterson Local Co-ordinator�s
Representative
The
year was extremely busy as we developed plans to expand our services to the
membership and improve the support offered to our network of Co-ordinators,
Local and Adult Contacts. The appointment of our first Regional Development
Officer is set to ensure a higher level of awareness in the West Midlands area;
and plans to appoint Volunteer Adult Co-ordinators will widen the area of
services offered around the UK. After
lengthy consultation period and research into similar organisations, we
established guidelines for our local groups enabling them to remain as an
integral part of the organisation whilst adhering to advice from the Charity
Commissioners. Our flagship group
in Nottinghamshire however had already grown to the extent, which required them
to register as an independent charity. I
would like to take this opportunity to thank Anne Taylor for her help and
support both to myself as a newly appointed member of the Board of Trustees and
for her continued support of our local groups.
During
the year there were several changes within the groups. I would like to thank Pat
Clarke and June Ely for the support and commitment to those in the South London
and East Dunbartonshire areas. Although,
leaving us as Co-ordinators, I am sure they will continue to offer their support
and advice to parents, adults and professionals.
A
warm welcome to Mairiona McInally-Kier who has taken over from June Ely; and to
Kay Douglas who starts a group in Fife. Our
Scotland Co-ordinators, led by Graham Robertson deserve particular praise for
their valued contribution to the joint project 'Talking about Dyspraxia'. Sincere
thanks go to all Co-ordinators, Local and Adult Contacts. Your work is invaluable to the Foundation. The more you raise
awareness the greater the understanding of the condition. Becoming
a Local Co-ordinator or Contact for the Foundation is worthwhile and rewarding.
If you would like to join our band of volunteers, please call me on 01273
707735. Kim
Hobson Treasurer�s
Report The
year to 30 September 2024 marked an improvement in the Foundation's financial
position and was especially noteworthy for the continued improvement in
donations and fundraising. This enabled progress to be made towards the plans
for development officers in some regions. The
benefits of a continuing fundraising programme were reflected by the improvement
in available funds. John Buckle deserves our grateful thanks for his efforts in
this respect. Our slight fall in membership was evident in the subscription
income. Income from activities and sales also fell in the year. Conference
income was much lower due to the peculiarities of our conference scheduling. The
Executive
recognise
that management of the change in fundraiser is critical to our continued
progress in the current year. However, the large increase in recipients of
Dyspraxia News is expected to result in increases in donations, income from
raffles and sales of books and equipment. There
was a big reduction in conference expenditure for the reason given above. The
only significant increase was in stationery and printing, which covered reprints
of leaflets and the larger number of recipients of regular mailings. The
unrestricted funds are held entirely by or on behalf of local groups, largely
because central funds have been raised or allocated for specific purposes. It is
significantly easier to raise restricted funds for specific projects: we plan to
continue
utilising
available unrestricted funding to maintain current levels of activity.
Copies
of the full accounts may be obtained from the Secretary at the registered
address. Although
we have now moved beyond the time period covered by the Business Plan, we have
not progressed very far with the planned expansion in activity. An increase in
membership, and hence subscription income, would allow better use of donations,
grants etc to build that expanded level of activity. The
Foundation is progressing; but we need to find the funding to support further
increases in activity. Our target is to improve membership numbers.
The new membership structure offers a wide range of benefits to suit the
needs of all, from the child to the adult, the parent to the professional.
We
look forward to another year of improving our financial position. Richard Yates Dyspraxia Foundation
The
Dyspraxia Foundation is a national registered charity with its administrative
and fundraising centre in Hitchin, Hertfordshire. Founded in 1987 it is financed
entirely by membership subscriptions and private donations. The Dyspraxia
Foundation has a national network of local groups offering support and a wide
range of activities and maintains a service to over 2000 members. The
Foundation is a resource and information centre for those wishing to learn more
about dyspraxia, its diagnosis and treatment and is highly pro-active in its
area of expertise. The objects of the Foundation are:
The Foundation:
In addition to these activities the Foundation
supports a group for affected adults. |
