Welcome to the NSA Ahead of our 2021 AGM we have taken the opportunity to share who we are and the exciting things that we have planned...
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Welcome to the NSA
Ahead of our 2021 AGM
we have taken the
opportunity to share who
we are and the exciting
things that we have
planned...
Our Vision
.
At the NSA we empower our members with
kk knowledge to inspire confidence and to develop
resilience in order to embrace life and overcome
challenge.
We are at the forefront of proactive dissemination
of information on the syndrome, enabling the
professionals supporting our members to better
understand the condition, to make service delivery
effective and to improve the outcomes for
families and individuals
“The charity brings families together and prevents people with NS and their families living in isolation.” NSA member survey 2020
At the NSA we support
individuals, families and
professionals through a dedicated
medical advisory group, events
and publications.
The NSA is committed to sharing
knowledge in order to empower
individuals to advocate for
themselves, their family
members or on behalf of an
individual they support
professionally, to achieve the
best outcomes medically, socially
& academically.
The NSA cultivates strong
relationships in the medical
community & is supported by a
highly respected medical advisory
group.
The NSA advances the
education of the public and
professions providing services
to individuals and families by
communicating reports and
disseminating information by
effective means.
The NSA facilitates,
promotes & pump-primes research
for the benefit of the individuals and
families affected by the condition.
The NSA supports international
networking to advance improvements
in the understanding, care and
management of Noonan Syndrome
and related conditions on the
RAS/MAPK pathway.
A WORD FROM OUR NEW CHARITY CHAIR, KATIE BALLARD I joined the board in 2014 and was privileged to take over the role of chair in January 2021. I am so proud to be leading a team of talented and passionate volunteer trustees. For a small charity with only one part time employee the NSA has made some incredible achievements, and this would not be possible without your generous support. Every penny that we receive goes directly into our projects and initiatives to fulfil our charity aims of support, raising awareness and funding research. We are forever indebted to our wonderful regular givers, our fundraisers and to all those who have donated to us. As chair of the NSA, I pledge my personal commitment towards the charity and to assure you that I will do all I can to ensure that as an organisation we continue to move towards our united vision.
A MESSAGE FROM OUR MEDICAL ADVISER PROFESSOR MICHAEL PATTON I set out to find the gene for Noonan syndrome in 1986. At the time there were very few genes identified and it was quite a challenge. However, we did eventually find the PTPN11 gene in 2001. This discovery opened our understanding of the RAS MAPK pathway and the subsequent discovery of the other genes involved in Noonan Syndrome. It was not all about gene discovery. There were and still are many clinical questions to answer about the condition and each step we take along the way improves the lives of those with Noonan syndrome. I was very pleased to see that the families in the NSA strongly support research and I am pleased to announce we will be able to fund another start up research grant this year. As well as being involved in the research, I have also been involved with the patients’ group since the beginning. It has gone through a number of ups and downs since it was first set up, but I think it is stronger now than it has ever been and it will continue to be there to support all its members.
It was the much missed founding NSA trustee Don Andrew, who said to me after I’d been in post
A goodbye (as manager!) for about 3 years, “once you’re in, there’s no escape!”. As usual he was quite right, because having
from Peter Clarke who is reached one of those milestone birthdays last year, I decided it was time to step down from the
moving to a trustee role role of Charity Manager but the Trustees would only accept this on the condition that I became a
after spending 10 years as Trustee!
our charity manager It’s been a real privilege to be able to help establish what was, back in 2011, a new charity with
three trustees – Ian, Michael and Don - and fewer than 100 members focused on a condition I’d
never heard of when I applied for the job. It’s also been a real pleasure to play a part in seeing it
gradually grow to a thriving organisation with around 600 individual and family members and an
active Board of 10 trustees and volunteers beyond that. We all owe a lot to those first trustees and
to those who quickly followed them on to the Board and of course to the fantastic support from
members families. Not that it was all plain sailing but one advantage of getting old is that you
forget those bits!
And the best bit? That’s easy. It’s all of you – the families and individuals who I’ve got to know
over the years and as a result have got a bit involved in the challenges and triumphs you’ve
experienced around this condition, so a big thank you to you – and see you at the 2022 Families
Day!
Best wishes to everyone,
Peter
Hello from Sandie, our new charity manager I’m delighted to be working for this lovely charity and enthusiastic about supporting the NSA in this next exciting phase. I have a lot of experience of working in and with charities and voluntary groups. My most recent working background is as a management consultant, supporting large funders such as councils, National Lottery, housing associations and others to deliver, improve and evaluate community programmes and projects. Prior to that, I managed a partnership of 20 charities to deliver employability skills training and activities in Shropshire. Before that, I was contracts manager and then CEO for a relationship counselling charity where I managed 120 staff and volunteers to deliver services for adults and young people across three counties in the West Midlands. In the more distant past, I worked in business development for an urban regeneration programme in Scotland, supporting local people and community groups to start and run their own businesses. Having spent much of my career in the third sector, it’s where I’m happiest. I really look forward to getting to know more of you over the coming months.
This has been a difficult year for many charities with effects of the COVID-19 pandemic and lockdown bringing problems, not least
A Financial financially. We are therefore relieved to be able to report that NSA is so far weathering the COVID storm well, maintaining its
income level, containing its costs and leaving it in a good financial position for the 2021/2022 year. This has been down to a number
of reasons:
Update •
•
Our members have maintained their regular giving which alone has allowed us to keep most of our core functions going whilst
maintaining 6 months’ running costs in our reserves.
Despite the impossibilities of holding the usual run of fundraising activities over the Summer, several members were able to
raise funds either by virtual events – particularly through their employers - or by running “virtual” marathons, half marathons
or 10ks. For example, amongst several other members, Matthew Legg ran a “Virtual” London Marathon in October in memory
of his brother Mark, and more recently Nicholas and Oliver Jackson aged 8 and 7 ran 1 mile each during their February half
term.
• The decision to postpone both the 2020 and 2021 Families events due to the pandemic was taken with great regret by the
Trustees as it affected our ability to support families. It has however meant that we have been able to roll the funds allocated
for those events forward and this, together with the additional £15k support we have secured from the Vinci Foundation for
the event, means that we are able not only to look forward to holding the 2022 Families weekend with confidence but also
plan the delivery of online webinars in lieu of this year’s Families Day throughout 2021.
• We were also very fortunate to obtain funding from Novo Nordisk to help us with core costs and to overcome many of the
financial challenges faced by charities because of Covid.
• By continuing to keep our running costs to a minimum, for example holding meetings virtually rather than face to face, we have
saved a small but significant amount of expenditure.
All of this has allowed us to continue to develop our other activities including funding a specialist clinical nursing post at the new
Noonan Syndrome & Rasopathies clinic at Great Ormond Street Hospital and make preparations for our next round of “start up”
grants for medical research projects.
For those wanting more details, the full accounts for the financial year ending 31st March 2020 can be viewed on the Charity
Commission website where the accounts for the year just ended will be registered later in the year after audit.Meet our team of trustees
• The NSA has a team of 10 passionate and
dedicated trustees that work closely together to
ensure that the charity is meeting its core aims,
Sharon Allsopp Steve Hoey Ian Legg Andrea Reid-Kelly is listening to its members and where
Deputy Chair & fundraising Treasurer, strategy & finance
Finance and medical subgroup Social media subgroup
subgroup subgroup
appropriate to offer support to drive the charity
forward.
• Trustees meet altogether 4 times per year and
Grayson Bowler
Strategy subgroup
Brian Carlton
Fundraising subgroup
Gemma Wilkes
Social media subgroup
Jeanette Dyer
Medical subgroup
throughout the year individual strengths, skills
and experience are utilised within subgroups,
where trustees meet monthly. Currently the
organisation has a finance, medical, social
Katie Ballard
Chair, social media & strategy
Michael Patton
Medical adviser & medical
media, fundraising and strategy subgroup.
subgroup subgroupResearch is one of the most important
things to our members with 98% * telling
us that this was extremely important.
OUR CURRENT GOALS
* member survey 2020
Research is also important to us, and we have a dedicated group just
AND PROJECTS
for this, led by our medical adviser Professor Michael Patton.
This year assuming COVID allows we will be engaging with research
teams internationally regarding some fresh research with a hope
that we can replicate the success of our £20k research grant to St
George's Hospital in London. Our investment led to £2m of further
funding to look into lymphoedema in NS. We were delighted to see
this work published internationally; it really has been important in
raising the profile of this possible complication of NS.82% * of our members wanted us to
continue to share support and
OUR CURRENT GOALS
information throughout the pandemic.
* member survey 2020
AND PROJECTS
We have spoken with our medical advisers who are eager
to support us with a series of professional webinars and we
will be delivering our first digital session on the 27th April
led by genetic consultant Emma Burkitt-Wright. We are also
looking into sessions to promote social support for our
members and even music sessions for the children through
2021. Exciting times despite the challenges.NSA along with the charity One Great Day have raised
72%* of our members said funds for a RASopathy clinic in Great Ormond Street
Hospital. The NSA has put significant funds
they would love a dedicated
OUR
RASopathy clinic…CURRENT GOALS towards a clinical nurse specialist (to work alongside
a Clinical Geneticist, General Paediatrician,
AND PROJECTS
* member survey 2020 Cardiologist and other specialities) that will allow
families to be seen by all the expert doctors needed in
the easiest and most accessible manner possible. We
are waiting to hear more from Great Ormond Street
Hospital (GOSH) regarding a date for the clinic to open
and it will start with existing patients and build up
gradually. The clinic has been funded for 22 months,
whereafter it is hoped that its success will lead to
long-term NHS funding of the clinic.OVER 90%* OF OUR MEMBERS WANTED
US TO MAKE OUR SOCIAL MEDIA
STRONGER AND MORE INTERACTIVE…
* member survey 2020
We have launched a brand-new campaign ‘Become a #NoonanHero’ to
reach out within our community to spread the message 'you are not alone'
and to raise awareness of Noonan Syndrome in society. Anyone can be a
#NoonanHero; people who have Noonan Syndrome, parents, siblings, family
members, friends, medical staff, therapists and education staff, anyone who
does what they can to enrich and support our community. We know that our
members find enormous benefit from knowing that others are going
through similar experiences and that there are people willing to support.
This in turn reduces anxiety and helps us all to increase our resilience and to
achieve the best outcomes for ourselves and those we care for. We can all be
#NoonanHeroes by posting daily life photos, triumphs, fundraising activities
& reasons to be proud on your social media platforms, tagging us to help us
to get the word out!'Over 90%* of our members wanted us to
target our support to be more specific.
* member survey 2020
OUR CURRENT GOALS
AND PROJECTS
We have considered how we can achieve this and in the next 6
months we will be giving our website a complete re vamp! This
will include more links, resources and support to our members,
supporters, and the medical community.
This will be an exciting project and we will ensure that our
members are part of the re design. We cannot wait to get
started...90%* of our members said that they
would like us to develop regional groups.
* member survey 2020
OUR CURRENT GOALS
AND PROJECTS
We hear this and we have explored
We are also looking at
building our volunteer
how we can make this happen. We network over the next 18
have re-launched our regional maps months and introducing
on our Facebook page enabling regional representatives and
members to add their name to their more small events will form
county, and to reach out to those a natural part of our next
families or individuals that have steps….
posted that they live close by.“The NSA Families Day is
an outstanding event.”
Member survey 2020
OUR CURRENT GOALS Due to COVID-19 our 2020 and 2021
families event was regretfully cancelled.
AND PROJECTS But we have booked Whitemoor Lakes
near Lichfield in Staffordshire for 2022
and we will once again have a full
programme with an impressive lineup
of experts. It’s not all strictly medical,
we also offer sessions with a focus on
practical strategies too to support
individuals, parents and professionals.
Away from the formal sessions, there
will be activities both indoor & outdoor
for children and young people as well
as childcare for our youngest guests.And you can help us…
These are exciting • If you would like to become a regular giver, then please drop an email
to info@noonansyndrome.org.uk to request a standing order form or you can find a
times for the NSA. copy here by clicking on the “hands” button.
•
We have lots of You give regularly through Virgin MoneyGiving here or donate as a one off at Virgin
Money Giving | Donation | Donation amount .
• You can support us when shopping online through Give as You Live here Easy
plans to support Fundraising here or Amazon Smile here
Thank you and if you have any questions please do get in touch.
our members
even more.You can also read
