CHILDREN’S CHRONIC
ARTHRITIS
ASSOCIATION
Mission Statement
"The Children's Chronic Arthritis Association is the
leading
charity run by parents and professionals to provide help
and information for children with Arthritis, their
families and professionals
involved in their care.
We offer emotional and
practical support to maximise choices and opportunities
and raise awareness of childhood arthritis in the
community."
Executive Committee
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Chairman
Vice-Chairman
General Secretary
Newsletter Editor
Treasurer
Strategic Relations
Medical Advisor
Committee Members
Mike Aldrich
Brenda McGrath
Caroline Cox
Pam Whitworth
Mira Marcetic
Sue Maillard
Dr. Nathan Hasson
Tony Cox
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Booklets
Area Family Contacts
Joint Report
Telephone support
Educational projects
Support Projects
Sponsorships
Scholarships
JIA Family weekend
Workshops
CHAT alliance
Outings
Parties
Activities
Fund raising
Public Awareness
Practical help
and advice
ENCA
Area Family Contacts
AREA FAMILY CONTACTS (AFC) ARE PARENTS WITH A CHILD
WITH ARTHRITIS WHO HAVE A GOOD UNDERSTANDING
AND APPRECIATION OF THE “DAY TO DAY” LIVING WITH
JUVENILE IDIOPATHIC ARTHRITIS. THESE PARENTS,
THROUGH OUR TELEPHONE NETWORK AND WITH
PERSONAL CONTACT, PROVIDE SUPPORT AND ADVICE
TO OTHER FAMILIES.
WITH THIS SUPPORT WE HOPE TO ENCOURAGE FAMILIES
TO OVERCOME THE FEELINGS OF ISOLATION,
LONELINESS AND FRUSTRATION, WHICH THIS DISEASE
CAN BRING.
EVERY NEW FAMILY IS GIVEN THE NAME AND TELEPHONE
NUMBER OF THEIR LOCAL AREA FAMILY CONTACT.
AFC Conference 2003
and 2004
• For AFC to meet and discuss with the CCAA
Executive ways of developing further:
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Application process
Regular training
Telephone support
Fund raising
Promote awareness of:
• Childhood Arthritis
• CCAA
AFC
• Dynamic and evolving role
• More structured approach to
recruitment
• Annual workshops
• Training
THE JOINT REPORT
Regular Newsletter
· Medical and Therapy Information
· Practical Advice
· Reports on fund raising activities
· Reports on events
· Problems and Answers
· Kids Corner
Smile Project
As Children with Arthritis have many difficulties with oral
hygiene due to:
• Limited jaw movement
• Painful wrists and fingers
• Many medications
The CCAA has been given a grant from TESCO’S Stores to
provide electric toothbrushes to children with arthritis.
WEBSITE
WWW.CCAA.ORG.UK
Email: [email protected]
Arthritis Care
Children’s Chronic Arthritis
Association
Lady Hoare Trust
This Alliance is an informal group comprising of
these organisations, working in partnership to the
benefit of children, young people and their
families with arthritis.
It aims to develop information publications and
parent and child conferences, where these can be
more effectively resourced and delivered through
consortium working.
Work to Date
• CHAT Conference 1997
• CHAT Booklet
• CHAT 2 Parents Booklet
• CHAT Parents Workshop
• Up-dated CHAT Booklet
• CHAT 2 Teachers
JIA FAMILY
WEEKEND
The CCAA has organised 11 annual weekends for families with
a child with JIA.
The weekend aims to:
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Provide information about the disease and it’s treatment
and management.
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Provide a unique opportunity for families to discuss the
disease with experts.
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Provide an opportunity for the children to meet other
children with similar difficulties.
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Provide an opportunity for new activities to be tried and
for everyone to HAVE FUN.
Weekend Programme
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Attended by Experts in Paediatric Rheumatology
• Play Specialists
Consultants
• Teachers
Physiotherapists
• Podiatrists
Occupational
• Social Workers
Therapists
• Psychologists
Nurses
Topics Covered:
• Pathology of
Disease
• Drug Therapy
• Eye Disease
• Physiotherapy
• Occupational
Therapy
• Podiatry
• School Issues
• Governmental support
• Independence Issues
Separate sessions for
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Mothers
Fathers
Children with JIA
Siblings
New Approach
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Shorter weekend
During school term
Lecture style for all adults at same time
Specific learning time for children
Specific fun time for the whole family
New activities
James Herson
Sponsorship
Awards to be given to support children
in a recreational activity:
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Sport
Music
Art
Drama
To give opportunities to develop new
skills.
Barbara Ansell
Scholarship
Awards to be given to support children
educationally with equipment or extra
tuition as required.
Open to children of all school ages.
A reward for enthusiasm for education.
Applications to start
Dec 2004
• Application forms filled by child and
parent with support from another
professional
• £250 each award
• Across the educational age groups
• Executive committee decide on award
ARMA - Arthritis and
Musculoskeletal Alliance
• Alliance that combines all groups
that work within this field
• CCAA and LHT only paediatric
group
• Political voice
• NICE anti-TNFα
Paediatric Rheumatology
European Society - PReS
Representatives of professionals from
Europe.
• Sharing Information
• Combined Research
• Building relationships
• CONFERENCES
Fund Raising
No Sponsorship / No Regular Grants
• Individual members
• Application for funding for specific
projects
• Donations
The Future
• Regular meetings for the Area
Family Contacts
• CHAT
• CHAT 2 Schools and CHAT update
• Increasing Public awareness of JIA
• ENCA
• Sponsorship/Scholarship
• JIA Weekend