2019 WORLDWIDE ANNUAL MEETING OF
FAMILIES AND SPECIALISTS REGISTRATION FORM
Welcome to Amy and Friends
Cockayne Syndrome (CS) and Trichothiodystrophy (TTD) Support.
Who are Amy and Friends?
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 weekly siblings clubs called My Time To Be Me in the Wirral and Denbighshire areas and we hope to open similar clubs across England and Wales 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 email@example.com
We provide equipment where possible to childrenyoung 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!
St Thomas’ Hospital
NHS England funded the
clinic in February 2019 to
assist consultants in caring
for their CS-TTD patients.
It provides services including Dermatology, Neurology, Ophthalmology, Dentistry, Dietitiary and Genetics. It is based at St Thomas’ Hospital in London and diagnostic tests are led by Professor Alan Lehmann from the University of Sussex and the clinical lead for the service is Dr Shehla Mohammed .
Amy and Friends is an integral part of the service giving feedback on the patient experience of the service and also by providing financial assistance for patients to attend the clinic.
you would like to make a
donation you can do so by
cheque to Amy and Friends,
OCC THE BOWLING GREEN, VILLAGE ROAD, OXTON, WIRRAL CH43 5SR and for bank details please email us: firstname.lastname@example.org