Viva Lewes Issue #147 December 2018

BITS AND BOBS
CHARITY BOX: CLAPA
The Cleft Lip and
Palate Association
(CLAPA) is a
national charity
working to improve
the lives of people
with a cleft lip and/
or palate and their
families. One in 700
babies is born with
a cleft, which can be
surgically repaired
but may have a range of different long-term
impacts. CLAPA provides information, practical
support, a community and a voice to people
of all ages affected by cleft. We spoke to Anna
Martindale, Information and Communications
Manager, and Cherry le Roy, who’s Regional
Coordinator for South East England.
What kind of support does CLAPA provide?
Anna: A huge range of different things, but
one of our main areas of work is fostering local
connections. It’s important for people to know
they are not alone. Even though cleft is the
most common facial abnormality, one in 700 is
still equivalent to only one child in an average
secondary school, so you may never meet
another person with a cleft. Our local groups
allow children and families to connect with
each other, share experiences, and do normal
things outside the clinical environment. We
also have trained peer supporters in each local
area who can provide one to one support on
the phone or face to face.
What kind of activities happen in Lewes and
elsewhere in Sussex?
Cherry: We hope to support families affected
by cleft to run their own events and groups.
In the past we had one such group in Sussex
who organised Christmas parties, farm trips
and social occasions, but unfortunately this
disbanded. We’ve
since changed our
format for these
groups and have
removed a lot of
the bureaucracy
and formality
so they can be
more flexible.
Last summer we
organised a family
day at Blackberry
Farm, and this year a residential weekend for
eight to sixteen year olds at Hindleap Warren.
These were great fun and, as one attendee put
it, “Everyone’s so supportive; they don’t care
about your differences because they have them
too.” Although we lack local volunteers at the
moment, there was a lot of popular demand for a
Christmas get together so we’re hosting a party
at Monkey Bizness in Lewes on 16th December.
How can people help or get involved?
Anna: We’re a small charity and, like many,
have seen a drop in funding, so it’s a boring
request but we always need donations. Raising
awareness is really important, so it’s great when
people can do things like making us a charity of
the month at school or work.
Cherry: If you want to raise awareness by
giving a talk or presentation, we can supply
you with leaflets, presentations, balloons and
banners and can go through with you the best
way to engage with your audience. And we’d
love to hear from people with fundraising ideas
from bake sales and coffee mornings to school
assemblies. Locally, if any families affected by
cleft would like to help organise activities for
people to get together, I would be happy to talk
to them about what’s involved and how we can
work together. Interview by Rachel Playforth
clapa.com
Photo by CLAPA volunteer
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