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UPDATE
The Acorn Committee,
PO Box 101, Otley, LS21 2WA
e:
t:
01423 734876
m:
07984 727304
ACORN FUNDING
FOR THE SCLERODERMA
PROGRAMME
Scleroderma is a rare disease. However, it still a ects 7000 patients
in the UK every year and 600 in the Yorkshire area. Furthermore,
these patients are usually young females for whom the disease can
be devastating. Unfortunately many doctors are not experienced
with recognising and managing the complications and may under-
estimate the signi cant impact on the quality of life for patients with
scleroderma.
Compared to the huge amounts of money invested in the commonest
diseases such as cancer, heart disease and diabetes, scleroderma
is the cinderella. Rare diseases are often supported by dedicated
organisations that are usually smaller in size and resource than many
others; but the advantage is the stronger relationships usually built
with dedicated clinical and research units. This has been evident
with Acorn and the Leeds Scleroderma Centre with its contributions
over the years making a big di erence. The link was symbolised with
Professor Emery planting a tree on the Stray in 2001 as a symbolic
demonstration of our commitment to Acorn and Scleroderma
research. Acorn’s contribution has subsequently ensured a dedicated
Scleroderma clinical research fellow in place since 2000 that has
allowed consistent care of our patients, as well as the development
and delivery of exciting research projects.
Acorn’s support has allowed us, in particular, to pump prime key
projects and initiatives in the programme. To cite some more
recent examples the Acorn fellow in 2008-9 established a more
comprehensive database of clinical details for all Scleroderma patients.
This has evolved into a regional inception cohort database and has
allowed us to be one of the only 7 European centres leading on a
major 2 million EU funded project (Desscipher). Similarly in 2009-10
the Acorn fellow started to evaluate a brand new imaging technique
that allows a virtual biopsy of the skin by systematically assessing and
collecting images of the patient’s skin. This work won the innovation
award at the British Society of Rheumatology in 2012 and allowed us
to buy one of only 2 machines in UK and obtain a NHS clinical research
fellowship.
Our Scleroderma research programme has also broadened to
investigate heart complications in patients with Scleroderma. The
Acorn research fellowof 2011-13 coordinated a clinical study fundedby
the Raynaud’s and Scleroderma Association to investigate the nature
of heart abnormalities in patients with Scleroderma, identifying the ‘at
risk’ patient and, in particular, evaluating conduction abnormalities in
patients with Scleroderma using an implantable recorder.
Through the Acorn funding we were able to set up a dedicated digital
ulcer clinic that now is a national champion for the specialised care of
patients with Scleroderma. Examples like these represent fteen years
of support and hopefully they will keep growing with time. Finally, we
have been able to participate in multi-centre trials which investigate
new therapies for the management of Scleroderma.
The funding from Acorn and support from Maria and Louise in
particular has been invaluable in providing a constant force that
has allowed the development of an internationally leading clinical
and research programme in Leeds over the last 15 years. There are
only 5 specialist centres for Scleroderma in the UK and Leeds is one
of the most active for research with a well-integrated clinical service.
Since Acorn began their support the group has grown from a single
consultant and research fellow to several, as part of a diverse, multi-
disciplinary group dealing with all aspects of Scleroderma care and
research. The work and dedication of all the volunteers in Acorn has
made a di erence to this rare but potentially overwhelming condition
that a ects signi cant numbers of patients in both the region and
internationally. True to its concept the Acorn Committee has seeded
a mighty oak tree.
Dr Francesco Del Galdo
2006
Mar:
Alzheimer’s Society
recruited two new family
support workers
Apr:
Total raised £382,000
Jun:
Tennis Tournament at
Ilkley Tennis Club
May:
Acorn Goes Gardening
with Dean Peckett of Harlow
Carr Gardens
May:
Great Gatsby Ball
Sep:
Golf Day at Ilkley Golf
Club
Sep:
Ripon Luncheon Club
starts at Bishop Monkton
Village Hall
Nov:
Hog Roast at Huby
Village Hall
Nov:
Christmas Fair at Hotel
Du Ville, Ripley
Dec:
Christmas Card by Adam
King
2007
Apr:
Total raised £411,635
May:
First 100k Bike Ride with
223 cyclists raising £37,000
May:
Volunteer Award from
The Alzheimer’s Society
Jul:
League of Mercy awarded
to Louise Hanen
Aug:
Dr Maya Buch initiated
dedicated Scleroderma clinic
and regular capillaroscopy
service
Sep:
Acorn Goes Gardening
luncheon
Sep:
Babycham Ball
Sep:
Golf at Pannal Golf Club,
Harrogate
Nov:
Acorn marched the
streets of Harrogate to protest
against the decision of NICE to
withdraw funding for Aricept.
NICE did eventually supply
funding for the drug.
Nov:
A private view with artist
Les Packham
Nov:
Wine Tasting Event at
The Hotel Du Vin
Dec:
Christmas card by Les
Packham
“Lots of happy memories of
helping a very good cause - so
glad I shared some time with
you all at Acorn.”
“One word which
sums Acorn up for
me is WARMTH.”
“The Committee is like a family with each member
contributing their particular speciality to the
overall cause. Throughout this journey, friends
and other family members contribute, encourage,
donate and inspire to keep us proactive and
productive.”
“The only person I knew when
I became an Acorn Committee
member was Louise...but after the
first meeting I felt part of a really
great team.”
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