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Letter from the Chairman
Welcome to issue 14 of our newsletter WORDS.
Before we go any further I must personally thank Paul Butt for doing a sterling job in laying out our newsletter in the past, but due to his university commitments he has had to step aside and let someone else have a go. For the time being I have stepped into the breach and as such you will notice a slightly different look to previous issues. If, however, anyone else out there has the time and would like to help with the production of our newsletter, please get in touch. Your help would be greatly appreciated.
We are all beginning to look forward to our next Family Fun Day, this time at London Zoo on Saturday 12th June. Our last visit to the Zoo 2 years ago was such a great success we decided to go there again, this time coinciding with their own special needs day. Again we look forward to a question and answer session and indeed our annual AGM. Details of these can be found later in this newsletter. Once more I must send out a big thank you, this time to Monique Lauder and her team for putting together this years Family Fun Day, again funded by Children No1 Foundation.
I look
forward to meeting you all at the Zoo and I promise to keep the AGM as short as
possible so we can get on with the fun.
Gavin
Leech
Formal
Notification of Annual General Meeting
Our 2004 AGM will take place during the Family Fun Day at
London Zoo on Saturday 12th of June. All committee positions will be
for re-election and anyone who wishes to stand for a committee position must
notify our secretary, Hayley Herman as soon as possible. You can find her
details at the end of this newsletter.
Family Fun
Day
This
year’s family fun day is to be on Saturday 12th June at London Zoo.
Hopefully
everyone will have received all the information and is able to make it.
On arrival
we will be meeting at the Huxley centre which approximately 100 yards on the
left after the main gate.
The Log
Cabin who are a specialist organisation in caring for children with special
needs are providing us with crèche facilities again for the under 3’s, and they
will be escorting children over 3 around the zoo. However, due to it’s
popularity, this has been fully subscribed
Our Annual
general meeting will follow and there will be presentations by Andrew Lysley
and Rachel Moore from the ACE centre that are experts in research and
development and speech and language therapy.
Professor Neville From Great Ormond Street and Katie Price from the Wolfson Centre and Prof. R. Guerrini are also attending and will complete our panel for questions and answers.
Once again this event has been kindly sponsored by the children’s No.1 foundation and we are extremely grateful for all their support.
For anyone
who hasn’t received any information about the event and will like to come
please contact Monique Lauder on 0208 428 6706 or by email monique.lauder@btopenworld.com
For
everyone else, we look forward to seeing you all on the day.
We still need to raise funds so further work can be done towards Worster Drought Syndrome. Whether it is towards proposed research or information packs for new families we have set up a fundraising team who can help you with any questions regarding this. You can find the contact details on the last page of this newsletter.
Massive
thanks to friends Selina Cross, Jimmy Murray and his wife who raised a total of
£912.00 by competing in the Great North Run on the 21st of September
last year. The cheque was presented to Susan Little who’s son Dean, aged 9, has
WDS. Susan said, “ We want to thank everyone for their help, and all those who
sponsored them”.
Gift Aid
& Give As You Earn Schemes
As
a small support group run completely by volunteers with no financial backing,
there is a need to raise funds in order to hold our annual family fun days and
cover the costs of things like the newsletters etc.
We
have had some fantastic support from people donating money from sponsorships in
the past and we would welcome anyone wishing to do so in the future.
Another
way we can do it is by government-backed schemes such as Gift Aid and Give As
You Earn.
Give As
You Earn, the UK's largest and most successful payroll-giving scheme, means
that any employee or pensioner paid under PAYE can donate to any charitable
organisation in the UK.
Why
Give As You Earn? Because giving direct from your pay is tax-free and causes
like us will benefit from your regular support. What’s more, from April 2004
the Government will be adding an extra 10% to your pledge.
For
example: If you pledge, from April 1st 2004, £10 from your gross
salary each month, it will only cost you £7.80 (depending on your tax bracket)
but the charity will get £11.
If
you would like further information please call the give as you earn help line
on 01732 520019 or visit the website www.giveasyouearn.org
or contact Jacqui Leech on 01376 348948 or by email on
fundraising@wdssg.org.uk.
The Family Fund champions an
inclusive society where families with severely disabled or seriously ill
children have choices and the opportunity to enjoy ordinary life.
We help families of disabled and seriously ill children
under the age of 16.
We give grants and information related to the care of the
child.
The range of grants includes holidays, leisure, laundry
equipment, driving lessons, and lots more.
The range of information
we produce includes subjects such as benefits, holidays and transport.
To find out if we can help you, you can:
1. Apply On Line - www.familyfundtrust.org.uk
2. Phone us on 0845 130
45 42 - Our telephone
staff are specially trained to help you with any questions you may have. You
can call us to discuss your requirements. We have Minicom for people with a
hearing impairment: 01904 658085. If you need an interpreter, call us on 0845
130 45 42 and tell us which language you speak. We will arrange for an
interpreter.
3. Fill in our
application form - Call
us on 0845 130 45 42 and we will post a form to you. Or you can download a form
from our web sit and post it to: Family Fund, PO Box 50, York YO1 9ZX
We also have information sheets
available on a large selection of subjects. Please contact us for further
information.
Address: Family Fund, PO Box 50,
York, YO1 9ZX.
Tel: 08451 304542
Email: info@familyfund.org.uk
Website: www.familyfundtrust.org.uk
Special
Abilities Ltd has been set up to provide training programmes to parents/carers
of a special needs person and to service providers, organisations and
individuals with an interest in special needs issues.
The
Medical Model
The Social Model of
Disability
The
Definition Of A Disabled Person
The
main aim for all the above training is to try to get non-disabled people
to understand the society, feel empathy, and hopefully change their way of
thinking towards all people regardless of their disability.
For
further information please contact Special Abilities Ltd.
Address: PO Box 360 Wakefield WF2
8WG
Tel: 01924 385977 or 07796 038291
Email:
special-abilities-ltd@abilities.fsnet.co.uk
Dates: 30th September - 2nd October 2004
Venue: National Hall, Olympia, London.
Special Needs London
An exhibition well worth attending housing every
resource for special educational needs ranging from school placements, computer
software packages, Makaton products, books etc. to dietary supplements such as
omega3 oils and Efalex.
For further information check out the website at http://www.specialneedslondon.co.uk/
Research on Congenital
Bilateral Perisylvian Syndrome
The laboratory of Dr.
Christopher A. Walsh at Beth Israel Deaconess Medical Centre and Harvard
Medical School in Boston, Massachusetts is searching for a gene that may be
responsible for Congenital Bilateral Perisylvian Syndrome (CBPS). Discovering a gene involved will help us to
understand the process of brain development.
It may also allow the possibility of genetic testing for close family
members.
Families choosing to participate would be asked to send a blood sample
from the individual with CBPS as well as from each parent if possible. We would
also request to review medical records and films from MRI or CT imaging. You do
not need to travel to Boston to participate, and we pay for all costs involved
in the research.
For more
information about this study, or if you are interested in participating, please
contact our genetic counsellors/study coordinators Adria Bodell, MS or Kira
Apse, ScM at walshlab@bidmc.harvard.edu.
For more
information about the Walsh Laboratory please visit www.walshlab.org.
Is a
charity that aims to provide an authoritative first point of reference for
those involved with individuals that have learning disabilities and challenging
behaviour.
Challenging
behaviour blocks an individual’s development. Addressing that behaviour can
lead to a brighter future for the individual and their family. The CBF aims to
be an easily accessible source of information and current developments within
the field. The CBF provides and accesses support, advice and information in
addition to raising awareness of challenging behaviour.
Feel free
to contact us.
Address:
The Challenging Behaviour Foundation, 32 Twydall Lane, Gillingham,
Kent, ME8 6HX.
Tel/Fax:
01634 302207
Email: vivcooper@thecbf.freeserve.co.uk
Website www.thecbf.org.uk
The Aidis
Trust - A national charity that is able to provide hundreds of
communication solutions each year.
Address:
The Aidis Trust, 1 Albany Park, Cabot Lane, Poole, Dorset BH17 7BX
Tel: 01202
695244 Fax: 01202 695322
Email: info@aidis.org
Website: www.aidis.org
Communication
Aids Project - CAP is funded by the DfES, and seeks to help pupils in
England who have communication difficulties. It provides technology to access
the curriculum and interact with others, and supports the transition to
post-school provision.
Address;
CAP, The CAP Administrator, BECTa, Milburn Hill Road, Science Park, Coventry,
CV4 7JJ.
Tel: 02476
416994
Website:
cap.becta.org.uk
Communications
Forum - Brings together the UK organisations concerned with the
needs of people with speech and language impairments.
Address:
Communications Forum, Camelford House, 87-89 Albert Embankment, London, SE1
7TP.
Tel: 020
7582 9200 Fax:- 020 7582 9606
Email: cf@communicationsforum.co.uk
Website: www.communicationsforum.co.uk
Communication Matters - A UK national organisation of members concerned
with the AAC needs of people with complex communication needs. Publishes a
journal and holds conferences and study days.
Address:
Communication Matters / ISAAC (UK) - 92 Windmill Road, Oxford OX3 7DR
Tel &
Fax: 0845 456 8211
Email: admin@communicationmatters.org.uk
Website: www.communicationmatters.org.uk
Find a Voice – A Kent-based charity providing support to families, enablers and
people with complex communication needs.
Address: Find a Voice, 49 Beaver Lane, Ashford, Kent. TN23 5NU.
Tel: 01233
640443
Email: joy@findavoice.org.uk
Website: www.findavoice.org.uk
The Sequal
Trust - A charity offering assessment and fund-raising services
for communication aids for children and adults with speech and/or movement and
learning difficulties throughout the UK.
Address:
The Sequal Trust, 3 Ploughman’s Corner, Wharf Road, Ellesmere, Shrops, SY12
0EJ.
Tel/Fax:
01691 624222
Email: sequal@freenet.co.uk
Website: www.the-sequal-trust.org.uk
If you know of an organisation that another member may find of use,
please share the information with us and we will put it in the next newsletter.
Please remember that this newsletter is by our members for our members.
If you would like to submit anything for our next issue please send it to our
editor Graham Spencer, his details are below. We would gratefully receive short
stories, personal insights, poems, funny stories or indeed anything that you
might consider useful.
Generally we keep the articles as sent but sometimes it may be
necessary to edit them slightly for various reasons.
The Editor and The Worster Drought Syndrome Support Group do not accept
any responsibility for the views of contributors expressed in this newsletter.
The next issue of WORDS will be after the Family Fun Day, around the
end of June.
Chairman Gavin
Leech Telephone 01376 348948
Address 10
St Vincent Chase, Braintree, Essex, CM7 9UJ.
Email chairman@wdssg.org.uk
National Contact Vanessa Butt
Address 212
Ashcroft Road, Ipswich, Suffolk, IP1 6AF.
Email national.contact@wdssg.org.uk
Secretary Hayley
Herman
Address 40
Hilfield Lane, Aldenham, Herts, WD25 8AJ.
Email secretary@wdssg.org.uk
Newsletter Graham
Spencer
Address 12
Priory Avenue. Pettswood, Kent, BR5 1JF.
Email words@wdssg.org.uk
Fundraising Graham
Spencer
Address 12
Priory Avenue, Pettswood, Kent, BR5 1JF.
Email fundraising@wdssg.org.uk
Group Web
Site is
www.wdssg.org.uk