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Supporting people affected by Charcot-Marie-Tooth disease.

History

1986

Ivor Dartnall-Smith and his wife Mavis contact Linda Crabtree, President of CMT International in Canada and start a small organisation in the UK.

1987

CMT International (UK) was decided upon as a name for the UK organisation, to be run independently of the Canadian organisation, with a committee of five people.

A newsletter was established for UK members.

1988

The accounts were audited at the beginning of the year, and showed total funds available of £2004.

It was decided to produce the newsletter quarterly

A constitution was drawn up and finalised and the organisation became a registered charity in October 1988.

An annual subscription of £4 is started.

The year ended with total funds available of £4309

1989

The first Annual General Meeting and Conference was held on 3rd June at the Alumwell Centre, Walsall, West Midlands

The committee was enlarged to seven members

Approximately 500 registered members

Total funds at the end of the year £11,785

1990

Second AGM and Conference held on 10th March at Darlaston Town Hall, Darlaston, West Midlands

£5,000 presented to the Muscular Dystrophy Group towards CMT research

Approximately 600 members by the end of the year

Decision taken to host an International Convention in 1992

Total funds at the end of the year £6,312 – reflecting donations made to outside bodies

1991

Third AGM and Conference held on 13th April at Darlaston Town Hall, West Midlands with 121 members present.

Expanded the committee to ten members to help with additional workload

Baroness Cumberlege and Reverend Roger Royle became our first patrons

The organisation purchased its first computer.

Member fees were increased to £6 for single members and £10 for families

Total funds at the end of the year £13,082

1992

The first Young People’s Weekend was held at Centre Parcs, Nottingham, taking 20 children with CMT on an adventure weekend.  This was funded by Children in Need.

Fourth AGM and Conference held on 4th April at Lovat Hall, Newport PagnellIMG_0003

International Convention was held in September at the Stakis Grand Hotel in Stoke on Trent, attracting 60 plus delegates from all over the world, including British Columbia, Australia and Europe, and with speakers from the States and Canada complementing our own British specialists.

Newsletter changed to an A4 magazine format

Members totalled 627

Total funds for the year ended at £19,989

1993

Fifth Annual General Meeting and Conference held on 8th May at Middleton Civic Centre, Greater Manchester

Second Young People’s Weekend had been held in May at Butlins, in Skegness – again funded by Children in Need.

Committee expanded to twelve volunteers

£4,000 donated to Muscular Dystrophy Group for research into CMT.

Membership/medical alert card produced for all members

Year ended with £11,494 in available funds

1994

A weekend event for older members was held at the Calvert Trust Centre in the Keilder Forest over Easter, when members tried abseiling and sailing in the freezing cold.

Sixth AGM and Conference was held on 7th May at the Patchway Centre, Bristol

First Grand Prize Draw held to help offset the costs of the AGM

A family weekend away was held at a caravan park in Mablethorpe, Lincolnshire with a few families present having a great time!

Joined the Neurological Alliance

699 members on the database by the end of the year

Funds for the year totalled £16,532

1995

Seventh AGM and Conference held on 29th April at Eastgate Resource Centre, Worksop with approximately 120 members present

Family weekend held in Norfolk for a small number of families

Young People’s weekend held at Easter at Calvert Trust, Keilder Forest

First meeting held for co-ordinators, to assist them with the running of their groups

Members at the end of the year – 843

Funds at the end of the year – £22,167

1996

Eighth AGM and Conference held on 20th April at the Lord Mayor Treloar College, Alton, Hampshire

First Scottish Regional Mini Conference held in Edinburgh on 11th May

1996_0036

Ivor Dartnall-Smith and Chair, Annette Masser, cutting the birthday cake

Tenth Birthday Celebrations held at the Stakis Northampton in September with approx 80 members present

Professor Anita Harding, who literally “wrote the book” on CMT, died from bowel cancer, aged 46

Young Persons’ Weekend held in October at the Calvert Trust in Exmoor

Membership at the end of the year – 903

Funds at year end – £20739

1997

Ninth AGM and Conference held on 19th April at Pudsey Civic Hall, Leeds

Received a legacy of £25,000

All GP’s surgeries written to during the year, inviting them to request further information.

Welsh Mini Conference held in October

Membership at the end of the year – 1081

Actor Jonathan Keeble became Patron

Total funds available at the end of the year were – £61,103

1998

Tenth AGM and Conference held on 25th April at the Forte Posthouse, Rugby

Young People’s Weekend held at the Calvert Trust in the Lake District at Easter

First website created by a member – www.cmt.org.uk

Membership standing at the end of the year at 1101

Total funds £52,433

1999

Eleventh AGM and Conference held on 17th April at the Marriott Hotel, Swindon

Young People’s Weekend held at the Calvert Trust, Exmoor

A “Teddy Bears’ Picnic” was held in June for families with young children at the Stratford Manor Hotel, Warwickshire

Members at the end of the year – 931 registered members.  The drop from the previous year was caused by removing “enquiries” from the database – leaving only registered, paid-up, members

Funds totalling £62,522 were available to the organisation

2000

Twelfth AGM and Conference held on 15th April at the Posthouse Hotel, Runcorn

A Second Teddy Bears’ Picnic was held in July, in Stratford upon Avon.

A Scottish Regional Conference was held in Glasgow in September.

Charcot-Marie-Tooth Disease: A Practical Guide was published in September and a free copy despatched to every library in the country.

Young People’s Weekend held at the Calvert Trust Centre, in the Lake District

Membership – 980

Funds totalled £48,425 at the end of the year

2001

The organisation’s name was changed to Charcot-Marie-Tooth UK at the beginning of the year and the logo updated to reflect this change.

 A mission statement was also devised

“Working to support those who are affected by Charcot-Marie-Tooth Disease, also known as Hereditary Motor and Sensory Neuropathy or Peroneal Muscular Atrophy”

Thirteenth AGM and Conference held at the Posthouse Basildon on 21st April with 160 members present

Nine active local groups by the end of the year

999 registered members

Funds at the end of the year – £ 47,498

2002

Fourteenth AGM and Conference held on 27th April at Holiday Inn, Brighouse, Yorkshire

Young People’s Weekend held at Bendrigg Activities Centre in Kendal

Sent out a Survey to the entire membership, and received over 700 replies

LibDem MP Paul Burstow becomes a Patron

Membership at the end of the year – 1019

Funds at the end of the year – £56,475

2003

Fifteenth AGM and Conference held on 26th April at the Holiday Inn, Coventry

Joined the Long-term Medical Conditions Alliance (LMCA)

Won a grant for a “Charity HealthCheck” undertaken by the Charities Aid Foundation, looking into governance issues

Formulated a five year Business Plan to help develop the organisation

Young People’s Weekend at Bendrigg Centre, Kendall in October

Attended a CMT Awareness Day in Belfast

Membership at the end of the year – 1039 registered members

Funds available at the end of the year – £43,281

2004

Sixteenth AGM and Conference held on 24th April at the Thistle Hotel, Swindon attended by approximately 160 members

“Living with CMT” completely re-written and expanded, and gained “CHIQ” accreditation

Decision taken to change the organisation to a Company Limited by Guarantee (but still a charity)

Membership at the end of the year -1123

Funds available – £71, 547

2005

Seventeenth AGM and Conference held on 23rd April at the Holiday Inn, Runcorn with 120 members attending

Became a company limited by guarantee on 26th September 2005, necessitating a change of charity number to 1112370Karin on the Zip Wire

Welsh Regional Mini Conference held in Cardiff in July

Massive overhaul of website initiated, to include online donations and memberships

Second edition of Charcot-Marie-Tooth: A Practical Guide commissioned

New database system purchased for the membership administration

An incredibly successful Young People’s Weekend was held in September at the Bendrigg Centre in Cumbria

Membership at the end of the year – 1250 (approx)

Funds available – £45,212

2006

Eighteenth AGM and Conference held on 29th April at the Holiday Inn, Maidenhead, with approx 125 members attending.

Scottish Regional Conference held in Edinburgh in July – funded by Awards for All ScotlandJohn and Karen with the Practical Guide b2 copy

Overhaul of website completed, and went “live” in early January.

Charcot-Marie-Tooth: A Practical Guide published in April.

Complete review of all committee and financial procedures and business plan undertaken

Became a company limited by guarantee and as such, changed our financial year end to 30 September

Funds available as at 30th September – £47,869

Membership at the end of the year – 1300 (approximately) including many in Europe, Ireland and further afield

2007

Nineteenth AGM and Conference and the 21st Anniversary of the founding of CMT United Kingdom – celebrated at the Stratford Manor Hotel, Stratford upon Avon, and culminating in a fabulous Gala Dinner in the evening.

Employed our first member of staff, Liz Deane, on a part time basis.DSC01752

Held a “mini conference” with our advisors and group co-ordinators, funded by the Muscular Dystrophy Campaign

Awarded a grant from Awards for All England, to fund a publicity/information giving campaign, primarily aimed at GPs

A record amount of fundraising was undertaken by our members, enabling another fantastic Young People’s Weekend to be held in the Lake District in October.

Membership at the end of the year – still around the 1250 mark – almost all joining via this website.

Funds available at the end of the financial year – £85,988

2008

Twentieth AGM and Conference at our new “home” for Conferences, the Hilton Hotel in Coventry on 19th April, with more members attending than ever before, due in part to being able to increase the subsidy to the members, thanks to a large anonymous donation.

Despatched the new “Good Care Guides” funded by Awards for All to all members

A freephone telephone number was launched, enabling members to phone us for freeThe finished stand

Attended the UK’s largest disability exhibition, Naidex, at the NEC in April

Membership still hovering around the 1300 including over 100 from outside the UK

Attended the first ever CMT Information Day in Dublin, Ireland, hosted by Muscular Dystrophy Ireland

Another Young People’s Weekend held at the Calvert Trust in October

A Scottish Regional Conference held in Edinburgh, in October, partially funded by the Muscular Dystrophy Campaign

Had a stand at the Royal College of GPs Annual Conference in Bournemouth and also attended the first ever Translational Neuromuscular Conference in London

Funds available at the end of the financial year – £94,763

2009

Twenty first Annual Conference and AGM at the Hilton Coventry, with 150 members attending, taking the opportunity to update and modernise the Memorandum and Articles of Association.

Attended Naidex again in April, with over 500 visitors to the stand recorded during our three day attendance

Liz Deane left our employ, to move away from Bournemouth, and Lisa Yeates was recruited to replace her.

Started offering a year’s free membership to new members, resulting in 50 new members in the first three days

Started producing monthly e-newsletters for members with email addresses.

Attended the second Neuromuscular Conference.DSCI0019

Commission a revamp of the corporate brand and an overhaul of the website

Move to self-contained offices in Southbourne, Bournemouth, allowing the expansion of services delivered to membership in a warm and spacious environment.

Membership at the end of 2009 – 1440

Funds carried forward at the end of the financial year – £102,332

Held another Young People’s Weekend at the Calvert Trust Centre, Keswick with 20 kids attending – enjoyed, despite the appalling weather

2010

Held the Twenty Second Annual Conference and AGM at the Hilton Coventry, with 200 members attending, followed immediately by our first Awareness Week.

Attended the third Neuromuscular Conference in Oxford and the conferences of the Association of British Neurologists and the College of Occupational Therapists.

Attended the College of Occupational Therapists’ Annual Conference again in Brighton

Held a Grand Opening of the office in Southbourne, attended by the Mayor and Mayoress of Bournemouth, and other invited guests, including local members and some of our key fundraisers.Amelie Pandraud

Launched the rebrand of Charcot-Marie-Tooth UK and the revamped website, and launched our first Facebook page.

Started part-funding a PhD student, Amelie Pandraud, to work with Professor Mary Reilly for a three year project into the genetic modifiers of CMT Type 1a

Held the wettest ever Young People’s Weekend at the Calvert Trust in Keswick, with the kids canoeing across the fields, and the Lake District suffering serious flooding.

Held a Scottish Regional Conference at the Strathclyde Hilton in September with 60 members attending

Funds carried forward at the end of the financial year – £115, 755

Membership – 1636

2011

Delegates 31Marked the 25th Anniversary of the organisation by holding an International Convention at the Hilton Coventry, with attendees coming from all over the world.  220 members attended on the second day of the three day event.  A Dinner Dance celebrated the milestone in some style.

Attended the North American CMT Consortium Conference in Washington DC – this meeting is a biennial event, with approximately 200 researchers attending from all over the world

Collaborating with other CMT support groups around the world, we held Awareness Month in September, retaining the services of a freelance PR consultant to maximise the publicity opportunities, resulting in considerable media interest

Attended the Neuromuscular Conference again, and the conferences of the Association of British Neurologists and College of Occupational Therapists

Professor Mary ReiAbbie and Jakki on bikes!lly, the UK’s leading specialist in CMT, agreed to become our Patron

Started direct debits for membership subscriptions, allowing us to improve retention of members

The CMT Kids raised a total £7500 for their Challenge Event – cycling, canoeing and abseiling in the Lake District

Held a Family Conference in Coventry for families with younger children with CMT, providing a mixture of informative talks for the parents and play sessions for the children

The Young People’s Weekend was moved to Bendrigg Lodge, Kendal with 16 kids attending.

Funds available at the end of the financial year – £126,767

Members – approximately 1,538

2012

Twenty fourth Annual Conference and AGM was held at the Hilton Coventry, with 130 members attending.

Held another very successful Awareness Month with a record number of articles being featured in local newspapers and approximately six interviews on BBC local radio stations.  Retaining a freelance PR consultant really makes a difference

Attended the fifth Neuromuscular Conference in NewcastleTenacious

Founder Ivor Dartnall-Smith sadly died, aged 82

Held another Regional Scottish Conference at the Strathclyde Hilton in September

Held an extra event for 12 of the CMT Kids on the Jubilee Sailing Trusts’ Schooner, Tenacious – spending the day sailing around the Solent from Southampton

Agreed to commission an update of our book, CMT – A Practical Guide, but to put the project on hold until funds are available

Streamlined the membership process, tightening the renewals process and removing the option of free membership for new members, unless people sign a direct debit mandate

Begin the process of creating a formal research strategy for the future

Employ Trustee, Karen Butcher, on a part time basis as Chief Operating Officer

Funds brought forward at the end of the financial year – £122,150

Membership – 1629

2013

Following suggestions from the members, the twenty fifth Conference and AGM was held at the Holiday Inn in Runcorn with 140 members attending.

Held a planning day with a fundraising specialist, reviewing processes and setting targets for the future.

Created a strategic plan for the future of Charcot-Marie-Tooth UK, incorporating a Research Strategy

Held a mini conference with our Advisers, being brought up to date on the latest advances in medical knowledge

Attended the ENMC research workshop in the Netherlands, the International CMT Consortium meeting in Belgium, ensuring we keep in the loop, regarding the latest research.  Also attended an Inherited Neuropathy Consortium Investigator’s day at the Centre for Neuromuscular Disease.  Exhibited at the Chartered Society of Physiotherapists’ Annual Conference in Birmingham, in October 13.

Reviewed membership, resulting in the implementation of a two tier system of Supporters – non-paying contacts, who have limited benefits, and Members – paying contacts who have a wider range of benefits, thus enabling us to stay in touch with a much larger number of people with CMT.  As part of this, a letter was sent to all Members and Supporters, with a questionnaire to update their details.

Held a Trustee meeting with our Group Co-ordinators, allowing a forum for discussion on strategic and other plans

Started the recruitment process of our first full time member of staff – Fundraising Manager, to help us achieve our targets for the future

Commissioned the third edition of CMT – A Practical Guide

Funds carried forward at the end of the financial year – £143,812

Members – 1191; Supporters – 1739

2014

Employed our first full time member of staff, Nichola Hibbert – who subsequently left us in August.  Found a replacement, George Brown in December to start in January 2015.

Held twenty sixth Conference at the Hilton Swindon, with 180 delegates attending.DSC_4545_1

Continued working on the re-write of CMT: A Practical Guide

Took part in Dorset Plane Pull, raising £3000.

Had an incredibly successful Awareness Month, being featured in many national and regional magazines and newspapers.

Commissioned a re-build of the website to encompass the latest internet technology and standards to be launched in 2015.

Held another Scottish Regional Conference at the Hilton Strathclyde with 50+ members attending.

Attended a wide variety of events and meetings during the year, including exhibiting at the Chartered Society of Physiotherapists’ Annual Conference, to try to raise both funds and awareness.

Continuing to fund the MRI scanning project at the MRC Centre for Neuromuscular Disease and also commit to funding a pilot study into balance interventions, and to co-fund a research project with Muscular Dystrophy UK.

Membership – full members 1180;  supporters – 1648

Funds carried forward at the end of the financial year (Sept 2014) – £98,157

2015

George Brown joined the team in January, and subsequently left in June – Karen to take over fundraising from July.

New website went live in March 2015

Annual Conference held at the Hilton Coventry, with a large turnout of 190, probably to hear Professor Mike Shy from the University of Iowa.

Held the second “Big Kids” weekend in April, to be known as the “Have a Go” weekend in future.

to be continued……

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