Our group was formed to facilitate the support of children and families suffering from Cockayne Syndrome (CS) and Trichothiodystrophy (TTD). Our group consists of CS / TTD sufferers, their parents and siblings, their extended families, family friends, representatives from medical disciplines, non medical therapists and other interested parties.
We organise meetings for group members to share experiences, knowledge and to gain support from each other. We assist families in attending other support opportunities and taking part in CS / TTD research programmes. Sufferers and families are able to meet others in similar situations to themselves, perhaps for the first time ever. This makes them feel less isolated and helps them to learn more about this illness. Families who have lost children can meet with someone who has shared their experience in the knowledge that their child will never be forgotten.
What We Do: Amy and Friends have an annual family/medical conference. This is attended by specialists from across the globe. Our children and families have the most amazing time! We hold a weekly siblings club called My Time To Be Me. This group is being piloted in the North West UK area and we hope to open similar clubs in the near future! Siblings love this time that is just for them….they experience many different projects – ideas are set by themselves and have included music/photography/CSI and much more! The children have bonded well with their peers and have gained their ‘own identity’. They have grown in confidence and self esteem! Amy and Friends take part in research programmes across the world. If you would like further information regarding this please email either [email protected] or [email protected] provide equipment where possible to children young adults and have contacts with other organisations. We have been able to distribute sensory equipment/ipads for communication and independence/walking aids and helped with wishes. Amy and Friends hold an annual Mums/Dads/children and young adults fun day out. We are advocates for families and much much more!