FDSSUK BREAKING NEWS
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Archived News 2019
06/11/2019
Important Information For All Members and Followers
Dear All,
The Scottish Parliament is running a consultation on introducing a Bill to improve the outcomes for children and young children with disabilities in the transition to adulthood.
The purpose of the Bill is to require the Scottish Government to implement a national strategy and require local authorities to prepare and deliver a transition plan for each disabled child.
We know this transition can be difficult. FDSSUK would like to submit a response to this consultation and therefore would appreciate your feedback. Whilst this Bill is specific to Scotland at this time, there is nothing to say we shouldn't push for this Bill to be adopted UK wide in the future.
The link to the consultation is provided. If you would like to help us with this, please send your feedback and any relevant examples of your experiences to Heather Delaney by the 1st December at the latest.
Best wishes, The Trustees, FDSSUK
NEWS_MICROLITE210919 23/09/2019
Val’s Microlight Flight For FDSSUK Charity
At nearly 81 years of age, Mrs Valerie Down successfully took to the sky on the 14th September 2019 to fulfil her dream of flying exposed to the elements whilst also fundraising to support a charity close to her heart.
Valerie experienced a half hour flight over Bath and the surrounding area, taking control and needless to say thoroughly enjoyed every minute.
Raising £760.00 with more donations promised on Just Giving, many having been Gift Aided. Valerie wishes to thank all those who have donated.
A few photographs and video highlights of the adventure are included for all to enjoy. Excuse the screams and shouts but hopefully it all helps capture the atmosphere and enjoyment of the day.
Her granddaughter Victoria suffers from a severe case of McCune-Albright Syndrome and has benefited from the support given by the Fibrous Dysplasia Support Society. Valerie wanted to ensure that funds continued to be available to enable the Charity to continue and develop its capabilities into the future.
The flight took place in ideal conditions from Brown Shutters Farm Airfield, a small private aerodrome near Bath. Watched by 10 friends and family, Pilot Brad Wagenhauser from Great Western Airsports skilfully guided the microlight into the sky and Valerie experienced a half hour flight over Bath and the surrounding area, taking control and needless to say thoroughly enjoyed every minute.
Raising £760.00 with more donations promised on Just Giving, many having been Gift Aided. Valerie wishes to thank all those who have donated. A few photographs and video highlights of the adventure are included for all to enjoy. Excuse the screams and shouts but hopefully it all helps capture the atmosphere and enjoyment of the day.
01/08/2019
FDSSUK Updates and News for August – September 2019
We are pleased to inform all our members and FDSSUK followers of the following updates. Firstly, there is important planning work being carried out to deliver a medical advisory board. Once in place the Medical Advisory Board will provide invaluable support and guidance in the key medical areas the FDSS is involved with. Also we can announce two new fundraising activities, both of which will provide much appreciated funds to support all the charities ongoing work.
Full details can be found in the News
and Fundraising Events
sections of the website.
Great News!
The Pathway is now published. Click button for more information.
25/06/2019
AN_MAB040919 04/09/2019
Creation of a Medical Advisory Board - Progress Report
Creating a joint Medical Advisory Board (MAB ) and a Scientific Advisory Board ( SAB ) is a priority for the charity right now. We are keen to attract the best medical professionals and specialists, whilst also ensuring these Boards are patient centred.
The aspiration is the SAB will support research into areas that our members advise are most important to them. The MAB will assist with signposting our patients to their nearest expert who can assist with treatment plans and offer advice on wellbeing matters.
We are being supported in this work by Dr Mike Collins, National Institute Health in Washington and Dr Kassim Javaid, Oxford University Hospitals NHS Foundation Trust. The MAB & SAB will be UK led, although I'm delighted to be able to advise membership will be extended, on an exceptional basis, to include leading pioneers outside the UK.
Should you any queries meantime, please send these to, Heather Wall
or Jamie Watson
Thank you for your support.
Heather Wall, Chairperson