CHILDREN’S CHRONIC CHILDREN’S CHRONIC ARTHRITIS ASSOCIATIONARTHRITIS ASSOCIATIONCHILDREN’S CHRONIC CHILDREN’S CHRONIC

ARTHRITIS ASSOCIATIONARTHRITIS 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• 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

      Booklets·      Area Family Contacts·      Joint Report·      Telephone support·      Educational projects·      Support Projects·      Sponsorships·      Scholarships·      JIA Family weekend·      Workshops

CHAT allianceOutingsPartiesActivitiesFund raisingPublic

AwarenessPractical help and adviceENCA

Area Family ContactsAREA 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:– 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 REPORTRegular 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: Info@CCAA.ORG.UK

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 WEEKENDThe 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.

Weekend Programme

• Consultants• Physiotherapists• Occupational

Therapists• Nurses

• Play Specialists• Teachers• Podiatrists• Social Workers• Psychologists

Attended by Experts in Paediatric Rheumatology

Topics Covered:• Pathology of

Disease• Drug Therapy• Eye Disease• Physiotherapy• Occupational

Therapy

• Podiatry• School Issues• Governmental

support• Independence IssuesSeparate sessions for

• Mothers• Fathers• Children with JIA• Siblings

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

James HersonSponsorship

Awards to be given to support children in a recreational activity:

• 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 RaisingNo 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