Myositis News - SCIENCE REPORTS FUNDRAISING RESEARCH AGM & CONFERENCE UPDATE - MYOSITIS UK
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MYOSITISUK
MYOSITIS UK Winter/Spring 2021
Myositis News
SCIENCE REPORTS • FUNDRAISING
RESEARCH • AGM & CONFERENCE UPDATE
2 Myositis UK
Winter/Spring 2021
Dear Member, not take place in the usual manner. the illness are vulnerable and need to
It could easily be said that last year The Christmas card sales were down keep safe. Nevertheless, the charity
was a trying and difficult time for because people couldn’t meet to sell trustees and friends of the charity
everyone and no doubt the majority them. Likewise, the Christmas charity continued to play their role knowing
of you would agree and ask the draw, for similar reasons, could not we had to push on and get back into
question, “Why state the obvious?” take place. The previously successful top gear. Myositis has no definitive
I could even deliver a further charity regional meet-ups had to cure but that is because we do not
observation that the year had been cease. The charity book stall had have the funds to discover a cure
rubbish particularly with having to to close and, alas, has now closed and it is this reason that the drive and
cope and worry about the biggest permanently. Our mascot, talisman ambition has not been diminished.
contributor to these opening words, and seasoned traveller, Teddy-Bo, has Just look at what has been achieved
Covid-19. We have all been affected been grounded and in hibernation. in such a short length of time in
by this disease and it has led to The biggest disappointment was developing a Covid-19 vaccine.
much sadness in some people’s our Annual General Meeting and Focus, money, scientific skill and
lives while others have lived in the Conference being cancelled. Added dedication made this possible.
fear of contracting it and living in near to the woes, the scientific community
isolation with mental health issues involved with medical research into We are pleased to publish our first
compounding it. myositis had to ease up on their news magazine of the New Year
projects to help in the bigger picture even though we are under national
It affected the charity in many ways of fighting Covid-19. lockdown yet again. Unfortunately,
and had the effect of being in deep towards the later part of last year, I
water trying desperately to keep afloat However, grim as all this may appear, was not able to sit at a desk to edit an
in the hope of drifting and eventually this is not the full story. People have edition. However, this is another story!
being marooned safely, and living to been fundraising for the charity, I trust this edition of Myositis News will
fight another day would have been people have been making donations, bring you up-to-date and hope that
considered a bonus. several anonymously, knowing that we can all do as much as we can in
we most probably need help. People treating and beating myositis as well
The charity has not been able to have been able to keep in touch as being vaccinated and keeping
function due to all the restrictions through social media by means of safe.
about meeting people and the charity forums and pages. The
congregating for the fear of spreading wheels have not fallen off the wagon Happy New Year.
infection. This has meant our and Myositis UK has battled on. The
fundraising ability has been curtailed issue with myositis is that you have to Les Oakley MBE
and the London Marathon event did be careful for the majority living with Chairman
C H AI R M AN L e s O ak l e y MBE SE CRE TA RY Pa ul a Jo rda n T RE A SU RE R Jo G o ode
T R U S T EE L au ra Oa k l ey CH A RIT Y CO -O RDINATO R I ren e Oa k l ey
MYOSITISUK
MYOSITIS UK
Myositis UK 3
Science Reports
The following news we would have liked to have published when it was submitted last year.
However, for myriad reasons it was not possible. The reports are very relevant today to what
is happening and extremely interesting.
Dr Janine Lamb writes, Spyridon Megremis, Thomas D. J. (autoantibodies), and accumulate
Walker, Xiaotong He, William E.R. throughout life.
I have attached a ‘lay summary’ Ollier, Hector Chinoy, Lynne Hampson,
[see page 4] for a short letter that Ian Hampson, Janine A. Lamb A new coronavirus has recently
we had recently published in Annals emerged from bats, and caused a
of the Rheumatic Diseases, and a Idiopathic inflammatory myopathies global pandemic of severe acute
press release that was written for (IIM) are a group of diseases with respiratory syndrome (SARS) in
The Myositis Assosiation (USA) that inflamed skeletal muscles (myositis). humans, called COVID-19. Due to this
funded this study. The lungs, heart and skin may also pandemic, we specifically searched
be affected. We don’t know what for antibodies produced against
This is part of a larger piece of work causes myositis, but genetic and coronaviruses. In dermatomyositis
investigating exposure to infections environmental factors, such as viral or patients, we identified antibodies
in individuals with anti-TIF1 positive bacterial infection, may be involved. targeted against bat coronavirus
dermatomyositis, which is currently The immune system is involved in proteins. Three specific sections of
under review. myositis, and two-thirds of affected these bat coronavirus proteins that
individuals have antibodies, proteins caused an immune response were
Dr Janine Lamb - Letter published in produced by the immune system, that very similar to human SARS-CoV-2
Annals of the Rheumatic Diseases: are specific to myositis. We recently that causes COVID-19. These findings
Ann Rheum Dis. 2020 May used a high-throughput approach to indicate particular regions of the
22:annrheumdis-2020-217522. identify antibodies that were enriched SARS-CoV-2 protein that might cause
in 20 individuals with dermatomyositis an immune response, and suggest
Antibodies against immunogenic compared to 20 healthy controls. that exposure to coronaviruses
epitopes with high sequence identity These antibodies are produced might contribute over time to
to SARS-CoV-2 in patients with against infections such as viruses or musculoskeletal autoimmunedisease
autoimmune dermatomyositis bacteria, and also against self-proteins development.
Simon Rothwell, February 2020
Dr Janine Lamb writes, has made an enormous contribution plans in place to ensure that the
to the work of our group, and wider MYOGEN data arising from the
A brief note to let you know that after international efforts, over the last ten Immunochip and related genetic
approximately ten years (!), Simon years and he will be greatly missed. studies is still available to everyone
is leaving the Manchester Myositis (with appropriate permissions)
Research Group at the end of this I hope that you will join me in within the MYOGEN Consortium,
month to take up another position wishing Simon well is his new role. through Chris Amos at Baylor
within the University working on RA College of Medicine. Fred will send
and RA treatment response. Simon In the meantime, we are putting an email in due course.
4 Myositis UK - Fundraising
Potential Targets for Pandemic
Covid-19 Vaccine Interrupts
Found, 28 May 2020 Research
Dr James Lilleker writes on behalf of
Scientists from the University method to identify antibodies Manchester Myositis Research Group,
of Manchester have identified produced by the immune
parts of the SARS-CoV-2 strain system against all types of At the start of 2020, nobody could have
of coronavirus that activate an infection that were unique or foreseen how much things would change
immune response and which enriched in individuals with in such a short space of time. Facing
could act as targets for vaccine dermatomyositis, compared the precipice of the pandemic, the
development. to healthy patients, during their University of Manchester shut its doors
lifetime. in March. The clinical academics of the
Writing in Annals of the Manchester Myositis Research Group
Rheumatic Diseases, the The work sheds new light (www.manchester.ac.uk/myositis/) were
small-scale study performed on how microbial infections seconded to full-time NHS work and put
before the pandemic used new may contribute over time to their research on hold. In this initial period
technology to analyse the total this disease, although the a lot of time was spent trying to keep our
immune response in patients team stress that identification immunosuppressed patients as safe as
with the musculoskeletal disease of antibodies against possible, providing advice on shielding
dermatomyositis and identified coronaviruses in individuals and making difficult decisions about
a link to lifetime exposure to with dermatomyositis does changes to medication regimens.
coronavirus infection. not necessarily mean the virus
causes the disease. We found ourselves working outside of our
Idiopathic inflammatory comfort zones, covering for colleagues
myopathies, such as Three specific sections of the who had been called up to work on the
dermatomyositis, are a group bat coronavirus proteins that ‘front-line’. We adapted our working
of diseases characterised by stimulated an immune response patterns and performed more remote
inflamed skeletal muscles that were highly similar to the human consultations on telephone and video
may also involve the lungs, heart SARS-CoV-2 virus that causes calls. If someone had told me in 2019
and skin. COVID-19 disease. that in 2020 I would be wearing a headset
microphone and running a remote first
Although scientists do not know Comparison of the 20 individuals seizure clinic from my kitchen table using a
what causes myositis, they do with dermatomyositis to 20 new video consultation system, I certainly
know the immune system is healthy controls has shed some would not have believed them!
involved and research suggests light on the immune response
genetic and environmental against coronaviruses, and Professor Chinoy and I ran two webinars
factors, such as viral or bacterial could suggest targets for on Covid-19, providing information and
infections, may contribute to vaccine development against a forum for discussion to members of
disease risk. COVID-19. Myositis UK and other people with myositis
across the country. We received some
The team used a novel unbiased Dr Janine Lamb great feedback on these sessions, and I
am thankful to everyone who joined us so
Myositis UK 5
enthusiastically. We are also indebted to
Will Gregory, consultant physiotherapist
investigating protein mishandling in
inclusion body myositis. We managed UK Rare
Diseases
at Salford Royal, who delivered a virtual to present some of our work (remotely)
physiotherapy session with exercises at the British Society for Rheumatology
that could be performed safely within the conference in April, including analysis
home. Resources from these webinars
and an exercise information leaflet from
of the link between the timing of cancer
diagnosis and long-term survival in
Framework
Will are still available on Myositis UK patients with myositis and examination Rare
website (https://www.myositis.org.uk/ of quantitative muscle testing data Disease
myositis-info/coronavirus-and-myositis/). in inclusion body myositis from our UK is
collaboration with researchers in a UK
Overall, the main memory I have of Newcastle. charity that works with health
this period is how kind, supportive and departments across the UK
understanding all the patients and families We have also been able to restart to implement the UK Strategy
I interacted with were. It was so moving clinical trials activity, such as the study for Rare Diseases to ensure
each week to see (and hear!) people of Zilucoplan for patients with immune that patients and families
standing on their doorsteps clapping mediated necrotising myopathy. Salford living with rare conditions
for NHS staff and other key workers. Royal remains the global leader for have equitable access to high
Please can I personally thank you all for recruitment to this study. An exciting quality services, treatment
your support during this period – it would investigator-initiated study led from and support.
have been so much more difficult to get Manchester and spearheaded by
through without it. Professor Chinoy investigating a potential They welcome the publication
new treatment for myositis (JAK inhibition) of the UK Rare Diseases
Some of the research we have managed has also reached the final stages of Framework and are looking
to complete recently has inevitably setup. forward to working with the
had a Covid focus. This has included four nations of the UK to help
an international survey of people with We have restarted our work on producing to deliver its aims. This is
myositis, reflecting on how management clinical guidelines for the treatment once again an almost unique
of their condition has had to adapt during of myositis. This collaborative project piece of health policy in that
the pandemic. We completed this in involves specialists, allied healthcare it represents a commitment
collaboration with myositis researchers professionals and patient representatives from four health ministers
in India, with members of Myositis UK from across the UK, and is facilitated by from across the UK to deliver
generously contributing their insights. The the British Society of Rheumatology. Once a shared aim for people living
study provided important food for thought completed, these guidelines will drive with rare conditions.
about how healthcare systems should up treatment standards and hopefully
organise themselves to ensure high improve outcomes for people with Overarching policy for people
quality care is delivered to patients with myositis worldwide. living with rare conditions
chronic conditions during a pandemic. is necessary now more
The publication will be available for We sorely missed being able to meet than ever. We saw in our
download soon. with everybody at the Myositis UK AGM December 2020 publication:
this year, but hope to see everyone again Rare Experience2020 that
More recently, our PhD students have soon in more normal circumstances! people with rare conditions
been able to go back to their research are insufficiently served by the
work. Alex Oldroyd is due to submit James Lilleker is an NIHR Clinical Lecturer system.
his thesis on remote patient monitoring and Honorary Consultant Neurologist For more information please
and Andrew Snedden is getting back to working at The University of Manchester visit the website https://www.
work on his Myositis UK funded project and Salford Royal NHS Foundation Trust raredisease.org.uk/
6 Myositis UK
Speed Funding Update
Kyla Britson (USA)
Project title: The Pathogenesis within muscle cells suggests that IBM muscle can regenerate within the
and Treatment of Inclusion Body is primarily a degenerative disease. mouse to form a functioning human
Myositis in a Xenograft Model However, the invasion of muscle muscle called a xenograft (Figure
cells by cytotoxic T cells and the fact 1). We were excited to find that IBM
When you are diagnosed with that some patients have a particular xenografts regenerate comparably
Inclusion Body Myositis (IBM), you autoantibody (Anti-NT5c1A) in their to both non-myositis and myositis
are faced with two hard facts: there blood both indicate that IBM could be control xenografts (Figure 2), and our
is no cure and the exact cause of primarily autoimmune. next step was to ask whether these
the disease remains unclear. Those xenografts showed pathological
two facts are at the foundation of the The absence of a laboratory model hallmarks of IBM.
Speed Funding Project I submitted to for IBM is one reason researchers
Myositis UK, which aims to study the have struggled to understand this Using a variety of experimental
cause and treatment of IBM using a disease and develop treatments. approaches, we have found that
xenograft model. To address these challenges, I IBM xenografts share features of
am developing a human skeletal the human disease, including both
The cause of IBM has been a muscle xenograft model of IBM in the inflammatory and degenerative
long standing debate due to the laboratory of Dr Tom Lloyd at Johns features. IBM xenografts frequently
combination of degenerative and Hopkins University. To make these show fibers with rimmed vacuoles,
inflammatory pathological features xenografts, I receive IBM patient and occasionally fibers with protein
seen in the skeletal muscle of patients muscle and transplant it into the leg aggregates. In addition, we observe
with this disease. On one hand, the of an immunocompromised mouse endomysial inflammation, primary
presence of rimmed vacuoles and an host. As these host mice lack a invasion of non-necrotic fibers by T
abundance of aggregated proteins functional immune system, the human cells, and mitochondrial dysfunction
Figure 1: Overview of xenograft regeneration. Following
the xenograft surgery, the existing human muscle fibers from
control or IBM patients undergo necrosis and are replaced Figure 2: IBM xenografts can regenerate robustly.
in their entirety by newly regenerated myofibers which are Representative images of non-myositis control, myositis
spontaneously innervated and vascularized by the mouse control, and IBM xenografts stained with H&E, human spectrin
host. At 14 days post surgery, there are areas of necrosis (magenta) to label muscle cells, human lamin A/C (yellow)
indicated by the black arrows. Then by 1 month there is an to label human nuclei, embryonic myosin (eMHC) (yellow) to
abundance of small regenerating fibers, and by 4 months a label regenerating fibers, and DAPI (cyan) to label DNA. Both
robust, mature human skeletal muscle xenograft has formed control and IBM xenografts show comparable regeneration.
Myositis UK 7
Erin Wilfon
as indicated by COX-deficient fibers (USA)
(Figure 3). Recently, we have started to
carry out T cell depletion experiments in In collaboration with the
our IBM xenograft model to help answer Bonami lab, we have been
the question: what role do T cells play in able to identify Jo1 specific B
IBM pathology? test potential therapies for the disease. cells circulating in the blood,
We are extremely grateful to Myositis and we are working on a
We are confident this xenograft model UK for the support they have given this manuscript with this data at
of IBM will help us better understand the project, and the results from our study present.
cause of IBM and provide a platform to will be published soon.
We also looked to see if B
cells invaded the inflamed
lungs of patients with anti-
Jo1 positive IIM, and this
Figure 3: IBM xenografts
recapitulate hallmarks does not appear to be the
of the human disease, case based on the patient
including rimmed vacuoles, samples available to us.
endomysial inflammation,
primary invasion of non-
necrotic fibers (arrow), and Finally we continue to work
mitochondrial pathology on transcriptional profiling
(arrow indicating a COX-
deficient fiber).
of B cells in IIM and are
tweaking the protocols for our
transcriptional analysis.
We did have some
substantial delays in
research with COVID-19, but
Saskia Lassche (Netherlands) hopefully I will have some
transcriptional data to share
before too long.
We have made great progress in Amsterdam to measure the contractility
optimizing the skeletal muscle on of the muscle bundles. So, as you can
I want to thank Myositis UK
chip model. We have started with see, we have already achieved several
for funding this award and
experiments with IBM and control of the aims outlined in the project
I look forward to sharing
serum to investigate the effect of anti- proposal.
additional findings.
cN1a antibodies on the muscle-on-chip
model. We are currently optimizing this We hope we will be able to continue our
protocol. experiments as planned, unfortunately
Covid-19 cases are rising in the
Another aim is to start contractile Netherlands and our government has
experiments at the Ottenheijm lab in already imposed new restrictions.
8 Myositis UK
Dr Frederick Miller MD PhD Is Retiring
When Irene and I first and the International community of and treatment of immune-mediated
knew about Fred it was myositis based research has gone diseases.
through researching from strength to strength and we
doctors and scientists now have the benefit of international He has focused much of his work
who had an active conferences that have been held in on autoimmune muscle diseases.
interest in myositis. This Sweden, United States and Germany He is leading a number of studies to
was in the days when the internet and if we can get past Covid-19 The identify environmental and genetic
was in its infancy and awareness of Czech Republic in the future. These risk factors for autoimmunity and
any activity was through their written have all involved participation from systemic autoimmune diseases.
and published papers. At this time, eminent medical representatives
and it must be over thirty years ago, worldwide. To allow him to explore his many
other names also cropped up in other interests, Fred Miller has
the United States such as, Dr Lisa Fred was at the start of these announced that he will be stepping
Rider and Dr Chet Oddis, names so events and this is his biography to down as an International myositis
familiar and friendly to us now. the background to his work. assessment and clinical studies
group (IMACS) Co-ordinator and
However, once the internet took off Dr Frederick Miller is Chief of Deputy Chief of the Clinical Research
we were able to contact these people the Environmental Autoimmunity Branch at NIEHS. He will be retiring
directly and since those days they Group in the National Institute of to become a Scientist Emeritus at the
have all visited this country and Fred Environmental Health Sciences at NIH in March 2021, with Lisa Rider
and Chet have spoken at our national the NIH, Bethesda, MD. He oversees taking over many of his oversight
conferences. investigators in his group as well as and administrative roles. An IMACS
others in national and international Advisory Committee was recently
We first met Fred at a scientific consortia that evaluate and conduct formed to address future planning
meeting and took the opportunity a wide range of basic and clinical and needs for IMACS. These needs
of inviting him to speak at our studies on adult and juvenile include additional coordinators, as
national conference being held in autoimmune diseases. well as considering what would be
Birmingham. He kindly accepted the optimal future administrative
and as a result of his participation He obtained his MD and PhD housing of IMACS. Candidates for
it encouraged many other medical from Case Western Reserve future IMACS coordinators have
professionals to also attend for University, went on to medical now been vetted by the Advisory
he was, and still is, very much residencies at Emory and Stanford, Committee and will come to a vote
respected for his understanding and then did rheumatology and by IMACS members in the annual
and contribution into research of immunology training at the NIH. ballot/survey.
neuromuscular disease. His work in the field of autoimmune
diseases spans three decades This is all rather heady stuff and
Since those early days and with and involves many aspects of you would expect Fred to be so
the driving force of Professor David the environmental risk factors, wrapped up in his work he would
Scott in the United Kingdom the epidemiology, immunology, not be a character who could be
association between Myositis UK genetics, pathogenesis, evaluation witty and amusing with interests
Myositis UK 9
outside of his scientific career. I can
Research Grants
recall a conversation when he told me
as a young man he wanted to be an
engineer!
The trustees approved funding of £31,982 to the
In 2002 Irene, Paula and I attended Manchester Myositis Research Group to support the
the Myositis Association conference ongoing research programme in Myositis.
in Atlanta ,USA. We booked in for the
meeting at the venue in an orderly and The grant awarded previously for £12,000 to Dr Pedro
friendly manner at 5pm and by 6pm Machado for IBM and AD amyloid PET imaging has,
we were standing outside the hotel in at his request, had an extension approved by the
the pouring rain caught up in the final trustees.
stages of Hurricane Isidora. There was
a fire alert with an urgency to vacate the Two of the three grants for 15,000 Euros awarded at the
hotel. I would mention we did not need GCOM meeting in Berlin have been paid and one is in
any prompting! Atlanta fire service and the process of being paid.
the police turned out in full force. An air
conditioning extractor was faulty and A grant of £5000 has been approved to fund a
pumping smoke into the fourth, fifth and database manager for four months for the IMACS core
sixth floors. Fortunately, the situation was set measures online training tool. Dr Hector Chinoy and
not serious and by 6.30pm we were Dr James Lilleker, The University of Manchester and
back in the hotel taking refuge in the bar. Prof Raashid Luqmani, University of Oxford.
Fred was already standing there, glass
in hand, in bare feet. He had left his A grant of £30,000 has been approved by the trustees
hotel room to have a brief reconnoitre to Professor Lucy Wedderburn for the UK Juvenile
when the door shut behind him, locking Dermatomyositis Cohort and Biomarker Study.
him out! I suppose it could have been (£20,000 contribution towards the salary costs of the
worse because he was decently attired. JDM Study Co-ordinator and £10,000 contribution
towards the cost of consumables required for the
Mind you, Fred is the sort of character study.)
who would be completely unfazed by
the sequence of events and the fact he A grant of £12,800 to fund the salary of Experimental
had nothing on his feet was not an issue Officer Hazel Platt for six months at The Faculty of
for him and rectifying the situation could Biology, Medicine and Health, University of Manchester.
wait.
Due to the Covid-19 pandemic some of the above
I am sure Fred will continue to be grants have had to be put on hold as most research
an influence in the understanding of could not continue as the doctors were seconded
myositis for many years to come. elsewhere. Hopefully, they will all resume this year.
10 Myositis UK
Consensus Exercise Guidelines
Paula Jordan writes, for this project was time. Prior to a papers in the phase 1 of the project.
meeting a published exercise paper Unfortunately, I was unable to make
At the beginning of April 2020, I had to be read and analysed through Zoom meetings scheduled for
received an invitation to participate a guided checklist. It was anticipated October and thereafter in 2020 but
in an international research project that each participant would read 2-5 the next is set for the end of January,
as a patient representative (PR) to publications and would involve 6-10 which I plan to attend where I believe
develop evidence-based, consensus hours in total over several weeks. the project has moved onto the next
exercise guidelines for juvenile stage of Assembly meetings for all
myositis. The papers were interesting and groups.
Helene was excellent at explaining
This project has been established the checklists when it came to It will be interesting to participate
by the IMACS1 Rehabilitation and discussion on Zoom. At first it was again and give input where I can
Exercise Special Interest Group quite daunting to be on a Zoom as well as see the project through
(SIG) and in addition to the JDM arm meeting with experts in the field the next phases. I know an ultimate
which I am a PR on there are also (from across the globe too) but there aim of the project and this SIG is
other adult arms looking into DM/PM was another PR present and our to develop educational materials
and IBM. views were always welcomed and on exercise for patients and health-
even on occasion gave real food for care providers. As a patient myself I
The lead of the JDM SIG is Dr thought. At the start of the project know how important this would be to
Helene Anderson and she expertly the time taken to review and discuss everyone, both children and adults
led our Zoom meetings. The first took longer than anticipated, but this with myositis.
part of the project was to review was accommodated and improved
1
International Myositis Assessment and
the current literature on exercise for upon. During the first COVID-19
Clinical Studies Group
myositis and for the group I was in lockdown I was able to give the
specifically JDM. The main input time to participate and reviewed 3
Webinars
In March 2020, when the pandemic started, Professor Chinoy and Dr
James Lilleker, along with physiotherapist Will Gregory, held webinars
over zoom for our members. These were very interesting sessions and
we are hoping to start them again on a regular basis either bimonthly or
quarterly. The dates and joining information will be put on the Myositis
UK website and on social media.
Dr Lilleker has shared his slides from these webinars and they are
available on our website along with Will Gregory’s exercise sheets.Myositis UK 11
Fundraising
£43,761.52 was raised through JustGiving for the charity during 2020.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll
never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the
charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.
Ashley & Pete
Trudgeon
Ashley writes,
My Dad and I had been planning on cycling from
Land’s End to John O’Groats for a few years now and
something had always got in the way. As he turned 50
this year, it seemed like a good time to get out and get
on our bikes! We cycled without company or support
vehicle and averaged just under 100 miles everyday,
all the way from Land’s End in Cornwall up to John
O’Groats in Scotland! The cycle was physically
challenging and equally a mental battle through the
storms and heavy rain we encountered on the way.
We chose to raise money for Myositis UK as you’ve
supported a bubbly, young girl that I had been lucky
to teach in my class last year. The resilience that I saw
day in, day out was inspiring. Hopefully, this money
will help Myositis UK to continue to support children
with Juvenile Dermatomyositis (JDM) and continue to
fund much needed research.
We managed to raise the grand total of what is now £755 by posting
daily updates of our cycle and many of our friends and family
followed our cycle, sponsoring us along the route. The initial target of
£500 was smashed on our last day, taking us hundreds of pounds
over the target! We cycled from Land’s End to John O’Groats in 9
days, averaging just under 100 miles a day.
https://www.justgiving.com/fundraising/trudgeonsontour12 Myositis UK
Tour de France 2020
Colin McNab writes,
Three years ago, my big brother
Andrew was diagnosed with
dermatomyositis. It has turned his
life upside down and he has had to
adapt to this new way of living, whilst
experiencing ups and downs along
the way. My sister raised a lot of
money for Myositis UK as she took
on the challenge of the Edinburgh
marathon, my mum raised a lot
of money taking on a 24-hour golf
challenge, so it was my turn to do
something!
About a year and a half ago, it was
announced that the Tour de France
2020 would start in Nice. I have lived in
Cannes for the last 10 years and one
of my closest friends out here, David
Derham, came up with the mad idea
of attempting to complete the Tour de
France.
We had been training for the best part We set off at the end of July on what was an unforgettable moment and
of a year on the local hills in our area. would be an epic 3 weeks of cycling the sense of achievement was
France had a fairly strict lockdown and exploring France. We kept a overwhelming. In total, we cycled
from March to May so we both had to steady pace throughout the first week, 3,548km with over 58,000m of
invest in home trainers. We changed enjoying a coffee stop in the morning climbing.
our original plan and decided to start and a lunch stop in some suitable
our tour at the end of July. restaurant en route. The days were I’m overwhelmed by the generosity of
long and the relentlessness became people. They have raised a fantastic
We had to book hotels and, more apparent early on. We would start amount of money for a very worthy
importantly, find a support team for at 7am or so, finish at roughly 6pm, cause and I hope that Myositis UK
our bags and transporting us from the pack the bikes onto the car, drive to continues their great work in helping
finish of one stage to the start of the the next start town, wash our clothes my brother and others who have
next. Thankfully, my mum and uncle and ourselves, find somewhere to eat, suffered at the hands of this disease.
were keen to help any way they could, reply to messages, stretch and then
so they signed up to be our support get some sleep before repeating the Colin and David have raised £7,131
team for our first week. David’s wife same process the next day.
then supported us for the next 9 days https://www.justgiving.com/
or so, before my uncle came back out We were delighted to reach Paris. fundraising/colin-macnab1
as he wanted to see us finish it! Riding down the Champs-ElyseesMyositis UK 13
A Man With A Van Half
Peter Marshall writes, research and to help improve treatments
I am offering a man with a van service to
and diagnosis.
Marathon
raise money in support of Myositis UK,
a charity that has provided support to a
good friend, Andrew Macnab, over the
Pete has raised £787 to date
https://www.justgiving.com/fundraising/
Of Doom
past three years. This is a great small petermarshall22 Adam Sheppard writes,
charity, that requires funding for ongoing
Against all odds and
common sense, I’ve signed
up to run a half marathon in
May. And, unless films and
TV have lied to me, all I now
need is a cracking training
montage, a cynical coach
who dares to dream and one
snarky competitor to beat.
All that aside, I also
thought this was a great
Land’s End To John opportunity to raise money
for Myositis UK. This charity
O’Groats Virtual Run
does great and important
work supporting people
diagnosed with this rare
disease and funding
Billy-Joe Davies writes, lift objects, and comb your hair. The
research to improve
muscle weakness can become so
diagnosis and treatment. I
I am running 874 miles virtual Land’s severe that even picking up a cup of
believe that this is a very
End to John O’Groats for Myositis tea can be difficult.
worthy cause and if my
UK (between September 2020 and
staggering through 21km
September 2021)because I got Now feeling well with medication
can help raise a little
diagnosed with polymyositis in 2019. keeping it under control and with help
money for them, then that’s
Polymyositis affects many different of me keeping fit I’ve decided to do
awesome.
muscles, particularly around the neck, a virtual running challenge to raise
shoulders, back, hips and thighs. money for Myositis UK.
Adam has raised £700
Symptoms of polymyositis include: I will be running the length of the UK,
https://www.justgiving.com/
muscle weakness, aching or painful Land’s End to John O’Groats. 874
fundraising/adam-sheppard6
muscles, feeling very tired, finding MILES!
it hard to sit up or stand after a fall,
swallowing problems, finding it hard Billy-Joe has raised £280 to date
to hold your head up, feeling unhappy
or depressed. You may find it difficult https://www.justgiving.com/
to get up from a chair, climb stairs, fundraising/bjdfitness14 Myositis UK
Hang Gliding in Loving
Memory of Pam Meacham
Sally Cargill writes, Sally adds,
My dear friend Pam recently passed I’m so very sorry to have to tell you
Ross away after a long struggle with
myositis. To raise donations for
that I can’t do my hang gliding for
Pam on Tuesday 22nd September,
Mabbott’s Myositis UK in her memory, I am
flying into my first tandem hang
as planned. After a meeting my pilot
had with her chief flying officer, it was
Birthday gliding experience at Airways Airsport,
near Ashbourne, on Tuesday 22nd
decided that under current conditions
around Covid-19 a tandem flight
September at 10.30am. Please would be untenable. She also says
Ross writes,
donate generously to support ‘after Covid’ she’s more than happy to
Myositis UK and in loving memory of take me up! As you can imagine I’m
I’m raising money for
Pam. bitterly disappointed but in view of the
Myositis UK as this is
present situation it’s understandable
the charity my late mum
Sally has raised £770 to date. and absolutely the right thing to do.
used to support. I lost my
dear mum in September
https://www.justgiving.com/ We hope that Sally can get airborne
2018 and she suffered
fundraising/memory-of-pam- and wish her every success for the
lots with muscle pain and
meacham future in her fundraising.
just wanted to do a little
bit to support the charity
my mum used to support.
It would be very much
appreciated if you could Beach Masonic Lodge
of Hampshire & IOW
spare just a little amount.
Thank you very much for
reading my fundraiser.
Have a lovely day.
President of the Lodge Jim Steel needed funds and we hope that our
writes, donation will help you to continue
Ross raised £149
the very important work that you do.
Although 2020 has been a very
https://www.justgiving.com/
difficult year with lodges unable We hope you stay safe and well
fundraising/ross-mabbott
to hold their usual scheduled as we look forward to better times
meetings, we have still been actively ahead.
fundraising.
Over the years Freemasons
It therefore gives me great pleasure around the country have been very
to enclose a cheque for the sum of generous and supportive of the
£500 on behalf of the members. We charity, raising thousands of pounds
know that during these exceedingly for us. However, it is not just the gift
difficult times many charities are but the kind and supportive words
finding it difficult to raise much that are so very heartening, as well.Myositis UK 15
The 2.6 Challenge
When the 2020 London Marathon was cancelled the
organisers launched the 2.6 Challenge to help charities
recoup some of the monies that would have been
raised by the London Marathon.
The event was open to anyone and for any charity. The
challenge was anything based on the number 2.6 or 26
and those performing the challenge asked friends and If there is any member who has been inspired to take
family to support their effort. on the 2.6 challenge for 2021 to help Myositis UK
continue fundraising through the COVID-19, pandemic
The 2.6 Challenged was launched nationally on 26th then please on the 26th April set up a challenge and
April, appeared on all media including the BBC news. JustGiving page. Information from the 2020 event can
still be found online. Visit, www.twopointsixchallenge.
Myositis UK trustees and members took upon co.uk
themselves varied challenges to raise funds.
If you are stuck for ideas, a simple google search
In the past Flyer we reported on some of these or browse on www.fundraising.co.uk may help; run
challenges which included Irene and me dressing up 2.6 miles, 26 handstands, row 26 miles, bake 26
and performing a daily 26 challenge, Paula Jordan cookies, build 2.6 metre tower of Lego, 26 rotations of
who whilst shielding ran 2.6 miles on her cross trainer 26 exercises, run and draw 26 using a running app,
for 26 days in a row and then on completion carried 2.6 cycle ride, 26 times flight of stairs, 26 minutes of
on walking and recording her walks to reach 260 dancing, 26 hours of silence, read 26 pages of a book
miles. Also involved were Lizi Williams who performed a day for 26 days.
personal training workout of 26 reps of 26 exercises
(raising £35) and Alison Belshaw who walked up and We would love some of you to have ago and report on
down her garden 26 times and raised £443. Alison said your effort with photos for publication in a later edition
on her JustGiving page at the time, “My mobility is not of Myositis News.
great but I will try to do this without my stick.” Brilliant
efforts by all!
There is yet no information whether another official 2.6
challenge will be happening this year, but, given that the
London Marathon date has been moved to October this
year and our much favoured and familiar fundraising
activities may not return to normal for a while, the 2.6
challenge is a simple way to raise funds.
Collectively £1862 was raised for Myositis UK last year
via the challenge and this is vital money that otherwise
would not have been received.16 Myositis UK
Fibre 4 Fibres
Fundraiser
Claire of the Cambridgeshire Helen Kurtz writes,
company writes,
Last year I was
We are a building contractor diagnosed with myositis.
who choose a charity each It has had a huge impact
year to donate to. This on my life as I have been
year we have chosen you unable to work and it limits my daily
because someone close to activities significantly. I have had a lot
us has myositis. The amount of support from Myositis UK and would
will vary each time we make like to raise as much money as I can,
a donation as it depends on through creative activities, to say thank
the jobs we do. you.
Helen has raised £11,807 to date and Helen must have the title “fundraiser of
G V Harrison Building the year” for Myositis UK. This sum of
is still fundraising!
Contractors Ltd are a family- money is quite remarkable when you
run business, established in https://www.justgiving.com/fundraising/ consider she raised it during lockdown
2008, which has delivered helen-kurtz and is still continuing.
hundreds of projects –
commercial and domestic –
and who pride themselves on
delivering the highest quality
of service and are meticulous
about the standard of their
work. They are the only Ann Lucas
contractor in their area
Ann has continued her fundraising is something everyone has heard
solely dedicated to VELUX
in memory of her dear dad, John of. Please help that journey for
installations. For each VELUX
Williams, because he was a current and future sufferers and
window they replace they
sufferer of Inclusion Body Myositis. their carers. This is the greatest
make a donation towards
way we can honour the memory of
their charity of the year.
Ann writes, our Dad.
Ann, Mark and Neil Williams
The company donated a
We are determined to do all
generous £1,110 for jobs
we can to help others with this To date they have raised £4,270.
completed in 2020.
disease and those who care for
people with this disease. We look https://www.justgiving.com/
forward to the day when there is a fundraising/annlucas-fordad
cure and Inclusion Body MyositisMyositis UK 17
JP’s Gym, Inflatable 5K, Glasgow
Gym members taking part on March UK Running Events Inflatable 5k fitness challenge together to support
3, 2020: Derek Budd, Suzanne obstacle course to raise money this charity and the people it helps.
Robinson and Sheila Moug for an important but underfunded
charity close to our hearts. A young Derek raised £40, Suzanne raised
Their story, member of our community and £60, Sheila raised £35 to date
their family is affected by Juvenile
We are a group of staff and Dermatomyositis or JDM. https://www.justgiving.com/
members from JP’s Gym in Being such a rare condition, the fundraising/jpsinflatable5k
Coatbridge. The ethos of our main charity for the condition, https://www.justgiving.com/
community is to support each other Myositis UK, receives no funding fundraising/suzannerobinson14
in living a rich, fun, active life for from the Government, National https://www.justgiving.com/
those we care about as much as Lottery or pharmaceutical grants, so fundraising/mightymougie
for ourselves, so we are taking on we have decided to take on this fun
Other Ways To Raise Donations
Thank you again to everyone who Thank you to everyone for raising
used Amazon Smile to raise funds donations for Myositis UK with
for the charity. Amazon Smile easyfundraising. If you haven’t We have received £1,600 from
is a programme that donates signed up yet, it’s easy and the PayPal Giving Fund. These
0.5% of your eligible purchases completely free. Some 4,400 funds are a grant that was made
on Amazon to a charity of your shops and sites will donate to us possible by donors who gave to
choice. All you need to do is start when you use easyfundraising to PayPal Giving Fund and chose
your shopping at smile.amazon. do your everyday online shopping Myositis UK as their choice of
com. The donation will be made – at no extra cost to you! Every charity.
at no extra cost to you. You just donation you raise makes a
need to select Myositis UK as difference to us so please sign up
your chosen charity. and share today.
https://www.easyfundraising.org.
uk/causes/myositissupportgroup/18 Myositis UK
In Virtual London Marathon
Memory 2020
One of our Gold Bond runners took
Of Loved part in the virtual marathon held by the
London Marathon.
Ones As you will probably know, due to the
pandemic, the race was cancelled
Also, on the JustGiving
in April and then again in October,
Pages, there have been
except for elite runners who took part
people raising thousands Stephen Bailey took on this challenge
in a special course in London without
of pounds in memory of and, in a message, said: “I enjoyed the
spectators.
very dear family and friends virtual in October and the fundraising is
requesting it will help the going well!”
Runners who took part in the ‘virtual’
work of Myositis UK.
marathon ran the 26.2 miles in October
on their own in their home towns. Stephen is also taking part in the 2021
Myositis in all its forms can London Marathon as one of our Team
To do this must have taken great
be very cruel and yet the Muscle runners.
determination and dedication.
way people have coped
with it is very inspiring.
Some of the words that are
expressed are: ‘Lived his
life to the full with dignity’;
‘Never let it get the better of
Merchandise
We have a selection of items
her’; ‘Unflinching optimism
available for purchase and to help
and good humour’; ‘Grit with fundraising.
and determination’; ‘Coped
with patience and dignity’. Re-usable cups with lids (dishwasher
safe) £8 each
Words can never express Shopping Trolley Key £1.50
Metal Pin Badges £1
the gratitude of Myositis
Pens 2 for £1
UK to all these people who Wristbands £1
have shown nothing but Teddy-Bo Badges 2 for £1
kindness and affection Teddy-Bo £5
during times when they Teddy-Bo Book £5 cost.) Please make cheques payable
have had to endure such to Myositis UK; for other ways to pay,
Postage & packaging is £2 for the please email the office for details.
great sorrow.
cup, £3 for Teddy-Bo, £2 for Teddy-
Bo Book and £1 for other items. (If If you are holding a fundraising event
you wish to order more than one item and would like some of the items to
please email the office for postage sell, please contact the office.Myositis UK 19
London Marathon 2021
Team Muscle is gearing up for this why Joanne’s doctor advised right at
great event with fingers crossed, will the start to be careful what you read.
take place on Sunday 3rd October. A cure needs to be found for myositis.
Please, please, dig deep, and help us
We hope the team will comprise of in our fight against myositis.”
some of the runners that should have
participated last year. Their resolve weakness of the muscles. When In 2020 we had 13 places available
has not been beaten, they are back in muscles are used they produce in the London Marathon. These have
training hopefully forming part of the CK (creatine kinase); the normal been reallocated over the next three
biggest team Myositis UK has ever person has levels between 60-174. years by the London Marathon.
had for the event. It would be expected an athlete after Five places in 2021, seven places in
completing an Ironman event (2.4 2022, one place in 2023. These are in
They are, as usual, raising their own mile swim, 112 mile bike ride followed addition to the five places for each of
sponsorship and I know you, dear by a marathon run, all in 17 hours) these years. This gives us 10 places
readers, will be helping them as well to have levels of 1500. Joanne was for 2021.
when the sponsor forms are sent out diagnosed with levels of 5800. This
as well as on line. meant the pain she felt was similar to These places have been offered first
completing nearly 4 Ironman events to our 10 runners who should have
All our runners have a story to tell for just from completing day to day tasks taken part in 2020 along with one
the reasons why they are running for and chores. There have been many other who had gained a ballot place.
Myositis UK. lows and stresses over the past few This would make a team of 11 runners
years, we, as a family, have had to for 2021. We also gave these runners
The following is a story about a former deal with just to try to have a ‘normal’ the option of deferring their place until
sufferer of myositis who, along with life. There is at present no cure for 2022. Three of the runners have at the
her husband, who has fundraised for myositis. The best we can hope for is moment opted for 2022.
the charity before, are taking on this periods of remission. In a way Joanne
superb challenge together. has been very lucky, as although her This leaves the charity with three
symptoms have been horrific and life places available for October this year.
Prior to his wife being diagnosed, changing, they have disappeared If you know of anyone who would like
Stuart Dillingham said: “We, like many into insignificance when reading what a place in this fantastic event and be
of you, had never heard of this rare others are suffering in the hands of part of a great team, please email the
disease that affects about 1 in 10,000 myositis. Many are unable to walk or office.
people. Myositis causes inflammation live alone as they are unable to do
of the muscles resulting in pain and much for themselves. We now know20 Myositis UK
4th Global Conference On
Myositis (GCOM)
Due to Covid-19 pandemic, this Since the very beginning of these We plan to include:
meeting cannot be organised in the conferences strong attention has 1. Genes and environment
originally planned time. It has been been paid to stimulate active 2. Pathogenesis, including
postponed to 2022. The new dates participation of young doctors and mitochondrial biology
are 16 -19 March 2022 in the same scientists. We would like to further 3. Antibodies & Biomarkers
location. encourage communication between 4. Pulmonary & Cardiac involvement
young and more experienced 5. Skin in myositis
Jirí Vencovský writes, experts by intentionally removing 6. Imaging in myositis
any barriers that might exist. We 7. Drug induced myositis
It is a great privilege to host the 4th also hope for active participation 8. Juvenile to Adult transition
Global Conference on Myositis in of patient representatives and their 9. Towards personalized medicine
Prague, the Czech Republic. Since organisations. (treatment of myositis)
the 1st convention in Stockholm 10. Repairing damage
in 2015, followed by meetings in With its accessible location and
Potomac USA 2017 and Berlin cultural heritage, Prague has recently We also will introduce ‘Great
2019, this conference has firmly become a frequent destination Debate’ with the topic of Inclusion
established its place in the field for conferences and congresses Body Myositis. We plan to hold
of myositis research. Idiopathic on immune mediated systemic several workshops, similar to those
inflammatory myopathies are diseases. We are looking forward to in Berlin. Also, similar to previous
heterogeneous diseases requiring welcome you in our city in the spring GCOM meetings, we will pay great
multidisciplinary approach. of 2021 (now 2022); however, we are attention to patients’ aspects. We
Participation of researchers, painfully aware, that the unfolding have formed a separate organizing
clinicians and health professionals Covid-19 pandemic may still disrupt committee that is working hard
from rheumatology, neurology, our plans. to organize and harmonize the
paediatrics, dermatology, program for patients, including the
pathology, immunology, GCOM is the premier global event poster session. In our preliminary
pulmonology, physiotherapy and dedicated to various forms of programme, we also assigned the
other sub specialities offers a inflammatory myopathies. Currently, time for parallel workshops with time
unique opportunity to meet and we are in the process of programme for patients organisations.
discuss the topic from different development. We identified
perspectives. The open and topics that will be in focus of the Myositis UK will endeavour to
welcoming character of the conference. Rather than aiming help in funding this very important
meeting is further potentiated by to individual myositis subtypes, international conference and in
participation of leading experts in we plan to discuss problems that particular the speed funding of young
other diseases to provide thought- are common to the many forms of scientists.
provoking state-of-the-art lectures. myositis.Myositis UK 21
Myositis
AGM & Conference 2021
It is with much regret that the conference we were
hoping to hold in June 2021 has been cancelled.
The date is too soon to be sure of the completion of
second vaccinations and the desire for members to feel
confident enough to attend. Also, our medical teams
may find that they are not in a position to have the time
with a backlog of clinics, etc, due to Covid-19.
The venue for the conference, the Oxford Spires hotel
Oxford, have been very kind and helpful during all the
uncertainty. There is no doubt the charity will be using
this venue in the future.
Annual General Welfare Advice
Meeting
Janet Horton can be contacted at: 1
Fellstone Vale, Withnell, Chorley, Lancs, PR6
8UE. She will be pleased to help Myositis UK
We are looking into the possibility of holding the AGM members regarding welfare advice. You can
on Zoom. We have looked at the advice and guidance also speak to her by telephone on a Monday
on the Charity Commission website and although we or Friday between 10am and midday on
do not have a clause in the Governing Document that 01254 832463.
specifically allows us to meet virtually or to use telephone
facilities, there is also no mention that meetings have If you telephone please tell Janet you are a
to be in person. However, the Charity Commission Myositis UK member for she helps members
advice is that if generally there is no such clause in the of other organisations as well. Janet cannot
governing document and we decide to hold meetings give any medical advice. Any member
over the phone or using digital solutions, they will requiring information of this nature should
understand as long as we record this decision and that get in touch with Irene or Les Oakley.
we have done this to demonstrate good governance of
the charity. The trustees have recorded this decision.
Our Governing Document was originally set up in 1988
and has only had a couple of amendments since that
time. We are therefore seeking professional guidance to
bring our Governing Document up to date.22 Myositis UK
Social Media
If you use social media, then this is a simple way Myositis UK Facebook Page is our main charity
to keep up-to-date. Page. It allows posting of messages in real-time
(rather than wait for a Myositis News) and re-post
We currently have four Facebook Pages: suitable messages from other organisations.
Myositis UK, Team Muscle, Juvenile However, our website is much more up-to-date
Dermatomyositis, and Teddy-Bo, his friends, thanks to Laura Oakley (Trustee). The Myositis
adventures and Juvenile Dermatomyositis. UK Facebook Page acts as the hub for our other
Facebook Pages and is administered by Paula
Facebook is always modifying the group and Jordan (Trustee) and Jo Goode (Treasurer).
page platforms, not always in the user’s favour!
Meaning many posts are not easily visible and Team Muscle Facebook Page is for anyone
direct messages are not received. fundraising and the event can be added to the
calendar linked to the JustGiving Page. Initially
If you need to contact the charity it is preferred set up for our Gold Bond London Marathon
you email rather than use Messenger within runners, this Page is now for all fundraisers
Facebook. whatever your activities are. Paula and Jo
administer this Page.
In the future it may be a suitable time to
amalgamate our pages together or change to Juvenile Dermatomyositis Facebook Page was
another Facebook format. initially set up by former trustee, Nikki Coleman,
to raise funds for JDM (namely the Teddy-Bo
How we deliver our social media is under Project) but has evolved as a general Page
continuous review. We do have a Twitter for JDM. Due to Facebook changes its user
presence, but we do not tweet often. interaction has been diminished and now mainly
serves as a signposting page. It is administered
If you do not use these social medias but use Paula.
the internet, then our own website still retains an
online community forum (Healthunlocked). Teddy-Bo his friends, adventures and
juvenile dermatomyositis Facebook Page
The traffic on our community forum is quiet as is administered by Paula. This Page allows
many prefer to use a forum that is inside one of any Facebook user to follow Teddy-Bo on his
their already open social medias. adventures as he meets his friends and raises
For this reason, Treasurer, Jo Goode, set up a awareness of the inflammatory muscle disease.
Facebook myositis community forum group a Again, Facebook changes have meant its
few years ago. This Group is very active, self difficult to see posts by others of their Teddy-
served by its users and Jo administers the page Bo photos and stories unless reposted by the
to welcome new people and ensure correct and admin so limiting its friendly usability. This may
safe discussion. change again soon, so please keep your Teddy-
Bo snaps coming in.
We know many Myositis UK members have
found this Facebook Group an invaluable source Myositis UK Community Forum Facebook
of support. Group administrated by Jo. A large community
of users some of which may also be members of
To find the pages on Facebook simply type Myositis UK. It serves as self-help and support
the name (in bold) into the Facebook search for anyone at any stage of their myositis journey.
browser.You can also read
