| Names and addresses ofadvisers | Names and addresses ofadvisers | Names and addresses ofadvisers | (Optional information) |
(Optional information) |
(Optional information) |
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| Name ofchief executive or names | ofsenior staff members (Optional |
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| Description ofthe charity's trusts |
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| Type of governing document |
Constitution | ||||||||
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| How the charity is constituted | CIO | ||||||||
| (eg. tftlst, assoclatlolt, compalty) |
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| Trustee selection methods | Appointed by |
existing Trustees | |||||||
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| Additional governance issues (Optional information) |
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| You may choose to include additional information, where relevant, about: |
Nicola Enoch & Sarah Costerton Caroline Warren |
Caroline Warren are both Trustees of The Ups ofDowns. is a Trustee of Down's syndrome research foundation. is Trustee ofScorfen Charitable Trust |
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| ~ | policies and procedures | ||||||||
| adopted for the induction and |
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| training oftrustees; |
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| ~ | the charity's organisational |
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| structure and any wider |
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| network with which the charity |
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| works; | |||||||||
| ~ | relationship with any related |
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| parties; | |||||||||
| ~ | trustees' consideration of |
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| major risks and the system | |||||||||
| and procedures to manage |
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| them. | |||||||||
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| RELIEFOF THOSE IN NEED BYREASON OF | PARENTS AND | ||||||||
| FAMILIES OF CHILDREN AND YOUNG PEOPLE | WITH DOWN | ||||||||
| Summary ofthe objects ofthe charity set out in its governing document |
SYNDROME IN THE UK THROUGH THE PROVISION OF A FORUM THAT PROVIDES ACCURATE UP TO DATE INFORMATION ON THE REALITIES OF LIVING WITH DOWN SYNDROME AND IS A CENTRAL HUB OF INFORMATION AND RESOURCES FOR THE CONDITION |
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| Summary ofthe main achievements ofthe charity during the year |
Our first registered year was exciting and evenfful. Following the success of PADS website and sending out resources to maternity units across the country, we launched a closed Facebook group exclusively for expectant women in the UK, who have received a high chance/confirmed |
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| result of baby having Down syndrome. Together with a closed group for |
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| new parents up to the age of 18months. These support groups have |
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| provided amazing peer support to new and expectant parents and the |
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| feedback has been overwhelmingly positive. We have teams ofexperts |
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| on hand in each group to offer specialist input as and when required. |
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| In September Founder &Trustee Nicola Enoch was invited to speak at |
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| the Professional Midwifery Advocate's conference and at Down |
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| syndrome education international's research forum. |
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| In October 2019we published Sharing the News —the maternity |
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| experience of having a baby with Down syndrome. We organised a |
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| photography exhibition at Westminster over 4 days at which we shared |
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| the findings ofthe report and met with over 40 Parliamentarians across |
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| the parties. The overall response to the report was concern at the lack |
of | ||||
| support and information provided to parents as well as shock at the |
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| expectation to screen and to terminate. Several influential |
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| Parliamentarians asked us to follow up the discussions. |
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| In November 2019 Nicola had an article published in the British Journal |
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| of Midwifery and in December 2019by the Royal College of Midwives. |
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| In March 2020 we returned to Parliament and spoke again about the |
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| findings ofthe report but unfortunately follow up was side lined due to |
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| Covid. In March 2020 we were invited to attend and promote PADS at |
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| the Better Births conference in Manchester and at the CNO's annual |
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| conference in Birmingham. |
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| In June 2020 we published ¹NobodyToldMe the truth about Down |
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| syndrome —a collection ofexperiences written by young people with |
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| Down syndrome, friends and family members to share the reality ofour |
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| everyday lives. |
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| Our initiative ¹Pants4School —to empower parents and professionals |
to | ||||
| ensure children with Down syndrome are toilet trained before they |
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| commence school was launched in March 2020 at Bladder & Bowel UK's |
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| annual conference. The closed Facebook groups continue to grow from |
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| strength to strength and as we entered lockdown we developed an online |
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| boot camp to work with groups of c25-30families to focus on getting their | |||||
| child toilet trained. | |||||
| The national support group network was unable to hold a conference |
in | ||||
| 2020 but the closed support group continued to grow, with over 100 |
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| groups representing several thousand families across the UK sharing |
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| best practise. |