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CHILDREN’S CHRONIC ARTHRITIS ASSOCIATION

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.

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CHILDREN’S CHRONIC ARTHRITIS ASSOCIATION

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  1. CHILDREN’S CHRONIC ARTHRITIS ASSOCIATION

  2. 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."

  3. Executive Committee • Chairman Mike Aldrich • Vice-Chairman Brenda McGrath • General Secretary Caroline Cox • Newsletter Editor Pam Whitworth • Treasurer Mira Marcetic • Strategic Relations Sue Maillard • Medical Advisor Dr. Nathan Hasson • Committee Members Tony Cox

  4. HOW CAN WE HELP? Support Information Advice • ·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

  5. 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.

  6. AFC Conference 2003 and 2004 • For AFC to meet and discuss with the CCAA Executive ways of developing further: • Application process • Regular training • Telephone support • Fund raising • Promote awareness of: • Childhood Arthritis • CCAA

  7. AFC • Dynamic and evolving role • More structured approach to recruitment • Annual workshops • Training

  8. THE JOINT REPORT Regular Newsletter ·     Medical and Therapy Information ·     Practical Advice ·     Reports on fund raising activities ·     Reports on events ·     Problems and Answers ·     Kids Corner

  9. 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.

  10. WEBSITE WWW.CCAA.ORG.UK Email: Info@CCAA.ORG.UK

  11. Arthritis Care Children’s Chronic Arthritis Association Lady Hoare Trust

  12. 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.

  13. Work to Date • CHAT Conference 1997 • CHAT Booklet • CHAT 2 Parents Booklet • CHAT Parents Workshop • Up-dated CHAT Booklet • CHAT 2 Teachers

  14. JIA FAMILY WEEKEND The CCAA has organised 11 annual weekends for families with a child with JIA. The weekend aims to: ·Provide information about the disease and it’s treatment and management. ·Provide a unique opportunity for families to discuss the disease with experts. ·Provide an opportunity for the children to meet other children with similar difficulties. ·Provide an opportunity for new activities to be tried and for everyone to HAVE FUN.

  15. Consultants Physiotherapists Occupational Therapists Nurses Play Specialists Teachers Podiatrists Social Workers Psychologists Weekend Programme Attended by Experts inPaediatric Rheumatology

  16. Pathology of Disease Drug Therapy Eye Disease Physiotherapy Occupational Therapy Podiatry School Issues Governmental support Independence Issues Separate sessions for Mothers Fathers Children with JIA Siblings Topics Covered:

  17. New Approach • 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

  18. James HersonSponsorship Awards to be given to support children in a recreational activity: • Sport • Music • Art • Drama To give opportunities to develop new skills.

  19. 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.

  20. 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

  21. 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

  22. Paediatric Rheumatology European Society - PReS Representatives of professionals from Europe. • Sharing Information • Combined Research • Building relationships • CONFERENCES ENCA

  23. Fund Raising No Sponsorship / No Regular Grants • Individual members • Application for funding for specific projects • Donations

  24. 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

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