Despite the fact that CS and TTD are not on the list of conditions provided on the www.gov.uk website, this is classed as an underlying condition and the children should be ‘shielded’ for the next 12 weeks, we understand that shielding is a very vague term and is open to interpretation. If possible one parent/carer should be ‘shielding’ themselves with the patient and minimising any external contacts. If a parent/carer still needs to go to work then that person should undress and shower on their return home and ensure that they are distancing themselves from colleagues/patrons as possible and maintaining regular good hand hygiene throughout the day. If anyone within the household develops symptoms they should be isolated away from anyone within an underlying condition. If you are struggling financially please visit:
Coronavirus Mortgage Relief For Homeowners
Special thanks to the following organisations helping us to get activity packs out during this pandemic.
The Steve Morgan FoundationMoondance Foundation Tesco (Groundwork UK)LCR Cares - Community Foundation MerseysideGreggsNational Lottery -Awards For All Legal and GeneralClaire Milne FoundationRadio City - Cash For KidsCommunity Foundation Wales - National Emergencies Trust
We have been able to send packages to over 900 children so far and are overjoyed to receive photos of children smiling and happy during this difficult time.
https://www.health-ni.gov.uk/coronavirus https://www.gov.scot/publications/covid-shielding/ https://gov.wales/get-coronavirus-support-extremely-vulnerable-person
https://cards.asda.com/volunteer?fbclid=IwAR3bPe9XF6_7x8KeJfUMrtDfn6uIHNlMdGf2iFf6LvsySxMhyUUfBZ3aT_Q https://www.gov.uk/government/publications/coronavirus-covid-19-guidance-for-people-receiving-direct-payments/coronavirus-covid-19-guidance-for-people-receiving-direct-payments https://www.rcpch.ac.uk/sites/default/files/2020-04/covid19_advice_for_parents_when_child_unwell_or_injured_poster.pdf https://covidmutualaid.org/ https://www.turn2us.org.uk/
30th October - 1st November 2020 - Amy and Friends Annual Family/Medical Conference:
Taking place at St Davids Hotel, Buckley, North Wales CH5 3YB.
Please Click Here for registration and please Click Here to see previous years.
Rare Disease Clinic been up and running for a year.
The multidisciplinary clinic has been up and running for 1 year. Clinic has allowed our families and CS - TTD patients to be seen by a wonderful team who specialise in CS and TTD, Dermatology, Neurology, Ophthalmology, Dentistry, Dietary and Genetics.
Amy and Friends is an integral part of the service giving feedback on the patient experience and also by providing financial assistance for patients to attend clinic. We accompany families and provide volunteers to help keep children fully entertained and supported.
NHS England funded the Cockayne Syndrome -Trichothiodystrophy (CS-TTD) multidisciplinary 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.
February 2019 - St Thomas’ Hospital London working in conjunction with Amy and Friends and NHS England opens the first multidisciplinary clinic for Cockayne Syndrome/TTD in the world! Our biggest achievement to date!