## |Names and addresses ofadvisers|Names and addresses ofadvisers|Names and addresses ofadvisers|(Optional
information)|(Optional
information)|(Optional
information)||||| |---|---|---|---|---|---|---|---|---|---| |T|eofadviser
Name||||Address||||| |Name ofchief executive or names|||ofsenior staff members
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a||~|~|~||||| |Description
ofthe charity's trusts|||||||||| ||Type of governing
document|Constitution|||||||| ||(eg. trust deed, constitution)||||||||| ||How the charity is constituted|CIO|||||||| ||(eg. tftlst, assoclatlolt,
compalty)||||||||| ||Trustee selection methods|Appointed
by||existing Trustees|||||| ||(eg. appointed
by, elected by)||||||||| |Additional
governance
issues (Optional
information)|||||||||| |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||||| |~|policies and procedures||||||||| ||adopted
for the induction
and||||||||| ||training
oftrustees;||||||||| |~|the charity's
organisational||||||||| ||structure
and any wider||||||||| ||network
with which the charity||||||||| ||works;||||||||| |~|relationship
with any related||||||||| ||parties;||||||||| |~|trustees'
consideration
of||||||||| ||major risks and the system||||||||| ||and procedures
to manage||||||||| ||them.||||||||| |||~|~||||||| ||||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||| ||||result of baby having
Down syndrome.
Together
with a closed group for||| ||||new parents
up to the age of 18months.
These support groups have||| ||||provided
amazing
peer support to new and expectant parents
and the||| ||||feedback has been overwhelmingly
positive.
We have teams ofexperts||| ||||on hand
in each group to offer specialist
input as and when required.||| ||||In September
Founder
&Trustee Nicola Enoch was invited to speak at||| ||||the Professional
Midwifery Advocate's
conference
and at Down||| ||||syndrome
education
international's
research
forum.||| ||||In October 2019we published
Sharing the News —the maternity||| ||||experience
of having a baby with Down syndrome.
We organised a||| ||||photography
exhibition
at Westminster
over 4 days at which we shared||| ||||the findings
ofthe report and met with over 40 Parliamentarians
across||| ||||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||| ||||expectation
to screen and to terminate.
Several influential||| ||||Parliamentarians
asked us to follow up the discussions.||| ||||In November 2019 Nicola had an article published
in the British Journal||| ||||of Midwifery
and in December 2019by the Royal College of Midwives.||| ||||D||| ||||In March 2020 we returned
to Parliament
and spoke again about the||| ||||findings ofthe report but unfortunately
follow up was side lined due to||| ||||Covid.
In March 2020 we were invited to attend and promote PADS at||| ||||the Better Births conference
in Manchester
and at the CNO's annual||| ||||conference
in Birmingham.||| ||||In June 2020 we published
¹NobodyToldMe
the truth about Down||| ||||syndrome —a collection ofexperiences
written
by young people with||| ||||Down syndrome,
friends and family members
to share the reality ofour||| ||||everyday
lives.||| ||||Our initiative ¹Pants4School —to empower
parents
and professionals|to|| ||||ensure
children
with Down syndrome
are toilet trained
before they||| ||||commence school was launched
in March 2020 at Bladder & Bowel UK's||| ||||annual
conference.
The closed Facebook groups continue to grow from||| ||||strength
to strength
and as we entered
lockdown we developed
an online||| ||||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||| ||||groups representing
several thousand
families across the UK sharing||| ||||best practise.||| ##