Sports Therapy Team at Teesside University Help Charity Achieve Major Milestone

Over the past 3 years Sports Therapy students and staff from Teesside University have supported athletes at the Great North Bike Ride. The event is in aid of a charity called the Chris Lucas Trust, an organisation which raises money for research for children with Rhabdomyosarcoma, a form of muscular cancer which affects approximately 1,400 children each year. We recently spoke to Senior Sports Therapy lecturer Helen Llewellyn and students to find out more about their work at the event and the Chris Lucas Trust

We hear a lot about The Great North Run but can you tell us about The Great North Bike Ride and where it takes place?

The Great North Bike Run (GNBR) is a 57 mile ride along the Northumberland coastline from Seahouses to Tynemouth Priory. It originally started in 2000 when 6 friends of Chris Lucas decided to do a sponsored cycle ride for the charity. In 2001 the number of riders had increased to 58 and by 2011 the number of cyclists had exceeded 2300. The GNBR has become a major local event, attracting elite and recreational cyclists from the North East and beyond.

How did the opportunity to provide support at the Great North Bike Ride initially come about?

The Lucas family are personal friends and in conversation I had mentioned that our students had volunteered at the Great North Run, as massage therapists. The charity asked if we would be able to provide a similar role for them. The University agreed that this was a good opportunity for our students to gain some ‘hands on’ experience.

	The Teesside University students were kept busy throughout the day

What was the student’s role? How many students attended this year? Were the students all from the same year? Did any staff other than yourself attend?

The students provided post event massage for the riders. This year 8 students from the second and third year and I attended the event.

What time did the team have to get to the event to set up and where were you based?

The team arrived at the event for 10am to set up the massage plinths in the marquee at the finishing line. The first riders came through between 11- 11.30am.

How was the service run? Was it a drop in facility?

The massage service was run as a drop in facility; although at times we had a rather large queue of cyclists who were more than happy to wait to receive their well-earned massage.

How busy was the service you and your team offered? Would you have an idea

	The Teesside University students in action

on how many riders the Teesside team saw?

As the event attracts many elite cyclists the students were busy from the start. However, the greatest number of cyclists completed the ride in 3 – 4 hours and this is when our service was in most demand. The team of students provided in excess of 150 massages at the event.

What was the feedback from the riders? Did they see it as beneficial?

The feedback from the riders was extremely positive. Many commented on the high standard of professionalism demonstrated by our students and all were very grateful for the service provided. In addition, many riders donated money to the charity for their massage.

We understand 2011 was a very special year for this charity. Can you tell us why?

In 2011 the charity achieved a £1m milestone, which, considering their original target was to raise £70,000 to fund a researcher for 2 years, is an amazing feat for a small local charity.

Helen, of what benefit do you think attending events such as the Great North Bike Ride to the students?

These types of events are of great benefit to our students as they have the opportunity to gain experience in a post event sports specific environment. The more work based experience a student gains while at University, the greater the range of employability skills they will be able to evidence upon completion of their degree.

	Teesside University Students have supported riders at the Great North Run since 2005

How important is being able to support charities such as the Chris Lucas Trust and having the opportunity to make a real difference?

It is vitally important, especially in times of austerity, that we are able to support a local charity. There is, as yet, no cure for Rhabdomyosarcoma. However, it is imperative that funding is maintained to support the research in to this rare and aggressive childhood cancer.

Are there any future plans for Teesside University students to help out at other events?

Since 2005 the students of Teesside University have worked at the Great North Run for both the NSPCC and Nova international.  As a former student at Teesside University, I volunteered for this event and found it an invaluable experience.

Some of the Teesside University students, who took part at the event, said the following:

“A really beneficial experience, great to add to my CV” “The day was very long and tiring but enjoyable. Looking back on my experience I was delighted to be able to contribute to a worthwhile cause. A great experience” “I couldn’t believe how many cyclists were queuing; it was just one massage after another. It made me realise how physically demanding our job can be” I was absolutely delighted when I heard the news that over £1 million had been raised by the Chris Lucas Trust. The largest proportion of fund raising has come from the GNBR and I feel very proud that Teesside University students have been involved in this event. Shortly after the GNBR, the Chris Lucas Trust Founder, Lynn Lucas, contacted Helen to let her know how grateful she was for the Teesside University students’ support. Lynn Lucas said: ‘’Helen, yourself and your students have kindly supported this major event for the past three years, this is greatly appreciated by the charity. May I take this opportunity to say on behalf of the Chris Lucas Trust I would like to sincerely thank you Helen and your students for their invaluable work, providing a massage service that helps cyclists with their much needed recovery after their 60 mile cycle ride.  The feedback we have received over the years about this particular service is excellent. Your service really does make the Great North Bike Ride, a memorable day for thousands who take part in this event from all over the Country’’

 

Great North Bike Ride 2011

Hi everyone, on behalf of the Chris Lucas Trust I would like to sincerely thank everyone that took part in the Great North Bike Ride 2011 it was a huge success for the charity, our next event is the Jingle Bell Walk November 24th 2011 check out the website at www.jinglebellwalk.co.uk

Please join us on our facebook sites chris Lucas Trust and Great North Bike Ride.

Please visit www.chrislucaastrust.com

 

Progress report for the Chris Lucas Trust

Funding a research into rhabdomyosarcoma

Over the past year the Chris Lucas Trust has generously continued its long-term
support for the ICR to provide funding towards Dr. Janet Shipley’s Research Team.
The aim of this research is to find new therapeutic targets which could potentially
help to improve cure rates, reduce side effects and improve function and quality of
life for children and young adult patients diagnosed with rhabdomyosarcoma. This
will be achieved through furthering understanding of the molecular biology
underlying these tumours, with links to national and international groups involved in
the clinical management of patients.
I am writing now to provide a short update on the progress made in 2010/11 ahead
of Joanna Selfe starting in the senior researcher role supported by the Chris Lucas
Trust. This has been written in conjunction with Dr Janet Shipley.
May 2011
Progress on the key achievements from our previous research supported by
the Chris Lucas Trust through funding Dr. Edoardo Missiaglia, a senior
scientist is:
We organised the genomic, gene expression and microRNA profiling of
around 100 rhabdomyosarcoma samples in collaboration with Professor Olivier
Delattre at Institut Curie. This data has been invaluable in underpinning a number of
studies.
Genomic and gene expression analysis of rhabdomyosarcoma cell lines
provided new insights (publication 1). This has identified cell line models with
particular features suitable for studying the effects of modulating the expression of
particular genes that may be therapeutic targets.
The profiling data of tumours has also provided support and cell line
models for the rhabdomyosarcoma biological component of the EU Consortium
Innovative Therapy for Childhood Cancers (ITCC) and the Kids Cancer Kinome
(KCK) project. This has led to the investigation of a number of potential therapeutic
targets for treatment of rhabdomyosarcoma (KCK website:

http://www.kidscancerkinome.org/).

The gene profiling data was analysed using computer-based
bioinformatic approaches in conjunction with analysis of the fusion gene status of
rhabdomyosarcomas. 70% of the alveolar subtype are associated with fusion genes
(either PAX3-FOXO1 or PAX7-FOXO1). Our work showed that the 30% of alveolar
cases without fusion genes are clinically and biologically more similar to the
embryonal subtype which strongly suggests that they should be treated differently
from the alveolar fusion gene positive cases. This has implication for the future
design of clinical trials (publications 2 and 3).
Edoardo’s bioinformatics work using the various profiling data for
rhabdomyosarcomas has also underpinned other collaborative studies (such as our
investigations of the SHH signalling with Simone Fulda (publication 6); the MYCN
gene and PDGFRs with Roberto Tonelli, Italy and Monika Ehnman, Sweden,
respectively (manuscripts in preparation)).
MicroRNAs play an important role in regulating the expression of genes. As
rhabdomyosarcomas resemble undeveloped muscle cells which can move and
grow, we investigated microRNAs that we showed caused rhabdomyosarcoma cells
to resemble fully developed muscle cells which do not have the ability to grow
(publications 4 and 5). This represents a potential therapeutic approach.
Edoardo integrated gene expression data with microRNA data to determine
possible roles for microRNAs in the cancer processes underlying
rhabdomyosarcomas. This provides a basis for further investigations.
Since Edoardo Missiaglia moved to the Swiss Bioinformatics Institute over a
year ago, we have kept in touch. He has continued with projects formally
through support from the Chris Lucas Trust in addition to spending his spare
time with analyses. We have also benefitted from additional bioinformatic
expertise from his new colleagues. This work has been mainly focussed on
the project below:
Following on from our study of the significance of fusion gene status in
the alveolar subtype of rhabdomyosarcoma Edoardo’s bioinformatics work has
determined clinically significant gene expression patterns and the impact of PAX3-
FOXO1 and PAX7-FOXO1 fusion genes on these patterns. This has allowed us to
propose a new robust and simple clinico-molecular approach to stratify patients for
particular treatments (manuscript in preparation).
Rebecca Allen, a new graduate who had
previously undertaken work experience in
the laboratory, joined us as a Scientific
Officer in September 2010 supported by the
Chris Lucas Trust. She has been learning
various techniques and contributing to
rhabdomyosarcoma projects in the lab.
She is now focussed mainly on the
following:
Further investigation of microRNAs
identified in the bioinformatic analyses and
those affected by the fusion gene protein. As
these or the genes they affect may have
therapeutic potential, we are keen to capitalize on our findings and explore the
effects of modulating their levels in cells.
Rebecca has been working with Joanna Selfe, an experienced scientist in the
group. Joanna has just started to be supported by the Chris Lucas Trust from
May 2011. She will be involved in supervising the functional work on
microRNAs and will investigate key candidate genes indicated from Edoardo’s
bioinformatic analyses as potential biomarkers and/or therapeutic targets.
Publications:
1. Missiaglia E, Selfe J, Hamdi M, Williamson D, Schaaf G, Fang C, Koster J,
Summersgill B, Messahel B, Versteeg R, Pritchard-Jones K, Kool M, Shipley J.
Genomic imbalances in rhabdomyosarcoma cell lines affect expression of genes
frequently altered in primary tumors: an approach to identify candidate genes
involved in tumor development. Genes Chromosomes Cancer. 2009 48(6):455-67.
2. Williamson D, Missiaglia E, de Reyniès A, Pierron G, Thuille B, Palenzuela G,
Thway K, Orbach D, Laé M, Fréneaux P, Pritchard-Jones K, Oberlin O, Shipley J*,
Delattre O* (*joint last) ‘Fusion Gene Negative’ Alveolar Rhabdomyosarcoma are
Clinically and Molecularly Indistinguishable from Embryonal Rhabdomyosarcoma. J
Clin Oncol. 2010 28(13):2151-8.
Editorial article: Diagnosing alveolar rhabdomyosarcoma: morphology must be
coupled with fusion confirmation. Wexler LH, Ladanyi M.J Clin Oncol. 2010
28(13):2126-8.
Research Highlight: Fusion gene status crucial in RMS Nat Rev Clinical
Oncology 7, 356 (July 2010)
Press coverage: http://f1000medicine.com/article/s7r0n21t2xh8mvc/id/2890959

http://www.healthcanal.com/public-healthsafety/

6733.htmlhttp://www.medicalnewstoday.com/articles/183913.php
3. Williamson D, Missiaglia E, de Reyniès A, Pierron G, Thuille B, Palenzuela G,
Thway K, Orbach D, Laé M, Fréneaux P, Pritchard-Jones K, Oberlin O, Shipley J,
Delattre O. Correspondence: Reply to J.R. Anderson et al. J Clin Oncol. 2010
28(29): 589-590.
4. RaoPK, Missiaglia E, Shields L, Hyde G, Yuan B, Chris Shepherd C, Shipley
J, Lodish H. Distinct roles for miR-1 and miR-133a in the proliferation and
differentiation of rhabdomyosarcoma cells. FASEB J. 2010 24(9):3427-37.
5. Missiaglia E, Shepherd CJ, Patel S, K, Thway K, Pierron G, Pritchard-Jones
K, Renard M, R Sciot R, Rao R, Oberlin O, Delattre O, Shipley J. MicroRNA-206
expression levels correlate with clinical behaviour of rhabdomyosarcomas. Br J
Cancer. 2010 102(12):1769-77.
6. Zibat A, Missiaglia E, Rosenberger A, Pritchard-Jones K, Shipley J, Hahn H,
Fulda S. Activation of the sonic hedgehog (SHH) pathway confers a poor prognosis
in embryonal and fusion gene negative alveolar rhabdomyosarcoma. Oncogene.
2010 29(48):6323-30.
We remain extremely grateful to the Chris Lucas Trust for their generous support
over the last year and continued pledge for funding both the roles of Rebecca Allen
and Joanna Selfe.

Rhabdomyosarcoma Research

GREAT NEWS!!

 New researcher appointed and  in post May and because of everyones continious support we have agreed to keep assistant for another 12 month contract.

We believe through medical research better treatments for our children suffering from this horrofic cancer and ultimatley find the cure.

Thank you so much to all our supporters and everyone for helping make this happen.

Collection Boxes

Hi everyone,

Just been donated some collection boxes  could any  of you out there  take to work/local pub/shop etc every penny counts towards finding a cure!!!

GREAT NORTH BIKE RIDE 10th ANNIVERSARY

http://www.chroniclelive.co.uk/north-east-news/todays-evening-chronicle/2010/04/24/700-000-in-memory-of-our-son-72703-26309798/

Institute Cancer Research/Chris Lucas Trust

Chris Lucas Trust Supporting Institute Cancer Research

http://www.icr.ac.uk/support_us/trust_supporters/partnership_navon/chrislucas/index.shtml

This was taken from ICR web site.

Chris Lucas Trust – supporting research into rhabdomyosarcoma at the ICR

 

We believe the cure is out there, please help us find it.

The Chris Lucas Trust was set up in March 2001 by Lynn and Lynn Lucas following the tragic death of their son Christopher from rhabdomyosarcoma – an aggressive cancer resembling muscle tissue.

Before being diagnosed in July 1997, Chris was a strong 15 year old boy, who played rugby, cricket and basketball. After twice battling back against the disease, achieving great GCSE results and starting out on a career in graphic design, the cancer finally took him in July 2000.

Rhabdomyosarcoma is a type of sarcoma and is one of the most aggressive cancers. It is a disease in which (malignant) cancer cells begin growing anywhere in the body. Rhabdomyosarcoma accounts for approximately 3.5% of the cases of cancer among young children 0 to 14 years, and 2% of the cases among adolescents and young adults 15 to 19 years of age.

Lynn explains, “As soon as Christopher died, we started to get letters and e-mails from many people who had also been affected by this particular type of cancer, we soon realised after making in-depth enquiries that only very limited research was being done at the time. Now by supporting concentrated research at the ICR we are leading in the area of testing new drugs for rhabdomyosarcoma.”
Christopher was the first teenager in the Teenage Cancer Ward at Royal Victoria Infirmary Newcastle where Professor Andy Pearson was his consultant for 3 years. Prof Pearson has since joined the ICR as Section Chairman of Paediatric Oncology.

When the Lucases decided to start the Chris Lucas Trust in 2000, they received help and support to get the charity off the ground from Professor of Childhood Cancer Biology at the ICR, Kathy Pritchard-Jones.

Kathy was able to help focus their efforts, which ultimately led to the appointment in 2005 of an experienced scientific researcher fully funded by the Trust, working exclusively on translational research into rhabdomyosarcoma. The researcher works in the Molecular Cytogenetics Team under Team Leader Dr Janet Shipley. Janet said, “We are indebted to the Chris Lucas Trust for supporting this research. They have raised over £300,000 for rhabdomyosracoma research at the ICR so far, and are keen to do more.”

Lynn says “We are delighted to have funded the research for a further 3 years and must continue to keep this position going. Fundraising is very hard work but very rewarding. We are not trying to be miracle workers but who knows? Our researcher may just find that missing piece of the jigsaw.”

FUNDRAISING FOR RHABDOMYOSARCOMA CHILDHOOD CANCER

***IF YOU CAN DIG DEEPER PLEASE DONATE AT http://www.justgiving.com/In-Memory-Of-Helen-2010*** Read more to donate now

I will be fundraising again this year in memory of my beautiful, legend of a sister who lost her life to cancer on her 21st birthday. As well as my usual fundraising page I have set up this page to see how much I can raise in £2 donations (the minimum donation accepted by justgiving)

Planned fundraising so far: Race for life on 20th June 2010, a fundraising gig….dates & details to follow & (maybe) Bramley Iron Mum in September 2010.

I am fundraising for the Chris Lucas Trust – the only charity in the UK at present which raises funds for research specifically into Rhabdomyosarcoma. Helen wanted to raise funds for Rhabdomyosarcoma when she was still with us but we didn’t manage to find a charity, I am very pleased to have been told about the Chris Lucas Trust so that I can now do this on her behalf.

Helen was diagnosed with Rhabdomyosarcoma in October 2003. This is a rare form of cancer which originates in the muscles that we control. Helen was due to be competing in the IDTA National Championships for Freestyle dance in the month following her diagnosis, something she had worked extremely hard to achieve.

Following her diagnosis Helen embarked on 12 months of treatment. Initially 6 months of intensive chemotherapy combined with radiotherapy, then 6 months of not so intensive chemo. The treatment appeared to go well & the tumour receeded quickly.

A few weeks after Helen’s treatment had finished she was told that no cancer remained. The happiness of this was shortlived however, when 2 weeks later the cancer ‘returned’. Helen’s consultant thought he must have missed something on the scan but he had not. Such was the aggression of the cancer it had returned from ‘nothing’ in this short time. Initially Helen was told there was nothing that could be done & that she was expected to live for between 3 & 6 months. Then Helen’s consultant said that he could try to remove the tumour but unfortunately this would mean also removing her eye. Helen immediately agreed & underwent the 10.5hr operation around 6 weeks later, the details of which belong in science fiction. Helen was transferred to the high dependency unit & was told that it would be at least a week before she could get out of bed but typical Helen within days she was up & about! The expected 3 month recovery time was also quashed by Helen who recovered extremely well at home, this included her regular partying & also taking part in race for life just 2 months after the operation.

Later in the year, following Helen’s operation, the cancer was beginning to show in other parts of Helen’s face. More radiotherpay followed & then in February 2006 it was confirmed that the cancer had returned to it’s original site. Helen had known this before Christmas but realising the consequences decided to enjoy Christmas first & then go to the hospital in the new year. It was then confirmed that no more treatment was available. The hospital said they could not believe Helen was still walking let alone clubbing in London as was the case at the time! Helen was expected to pass away at any time but we were told she would certainly not live longer than a month. My sister continued to prove the medical world wrong & fought & lived for another 3.5 months. Helen lost the sight in her remaining eye at the end of April 2006 which she said was the ‘worst thing that could have happened’, the following month was mostly spent at home.

Helen passed away peacefully, with dignity & in control on the evening of her 21st birthday, 27th May 2006, at home with my Mum, Dad & myself beside her having spent the day with family & close friends visiting.

I really do not want my sister’s fight, & it was a fight, to be in vain. The only way that cancer will be beaten is if we continue to help to fund research into this awful disease which claims the lives of far too many wonderful people.

I will be fundraising this year in memory of my gorgeous Sister, my cousin Tracey, my grandad, Helen’s friend Zoe who she met through treatment & Helen’s friend Kelly who she danced with & who sadly passed away at Christmas.

The Chris Lucas Trust & cancer research are charities which I believe passionately about raising funds & awareness for. Cancer can affect anyone, no matter how young, fit or healthy.

Adele x

 Read more

Cancer Patients To Be Offered Free Home Care

12:53am UK, Monday February 08, 2010

 Adam Arnold, Sky News Online

 All cancer patients are to be offered free one-to-one care in their homes from a personal nurse under Labour plans.

 The proposals, which will affect 1.6 million people who have or have had the disease, are to be unveiled by Gordon Brown later as part of Labour’s General Election manifesto.

The plans are being described as a move to “personalise” public services.

In a speech to the King’s Fund, the Prime Minister will say that within the next five years he wants to ensure every cancer patient has access to home treatment and advice from a specialist nurse.

 The move would be part of a wider drive to reform community healthcare, giving people the option of chemotherapy and dialysis without having to travel to a clinic or hospital.

Officials believe the shift in approach could save the Government £2.7bn a year by improving the management of patients with long-term conditions, reducing hospital admissions and emergency incidents.

 PM to announce home care plans

 In his latest Downing Street podcast, Mr Brown highlighted the Government’s pledge to guarantee free care for almost 280,000 older and disabled people with critical needs.

 ”It’s not fair that so many people already struggling with the loss of independence… are faced with the prospect of running down their savings or selling their homes to fund their care,” he said.

 ”Or that those seeing their parents and grandparents suffering from conditions like Alzheimer’s and dementia not only have to watch as their dignity fades, but have the heartbreak made worse by the costs of getting support.

“So I am proud that we are about to bring forward a new system of social care that will directly benefit many families of middle Britain.”

 The service – for people needing help eating, washing and dressing – is currently means-tested.

 But ministers say they want to guarantee free care for almost 280,000 older and disabled people with critical needs.

 And 130,000 others who require care for the first time would receive approximately six weeks’ free support to regain independence under the plans.

GREAT NORTH BIKE RIDE 2010

 

Seahouses to Tynemouth Priory Northumberland

               www.greatnorthbikeride.com

All on road,mainly cycle route 1  

The Great North Bike Ride Starts at Seahouses Tourist Information Car Park at  9AM, to end at Tynemouth, outside the Priory. The cycle ride is approximately approximately 60 miles, of beautiful Northumberland scenic coastline, ON ROAD, the entry fee is only £10. 

If you feel the cycle ride is too far then please do join us at a point that suits your ability.

The £10 registration fee  includes a  NIKE T Shirt, Medal, to assist the charity please register before 21st August 2010. Please inform your friends, workmates, get a team together! Have some fun, and raise some money for charity at the same time. Do I have to raise sponsorship money?  Yes, the £10 registration fee covers the Chris Lucas Trust’s  unavoidable administrative and organisational costs. In order to raise as much money as possible  for our future  Scientific Medical Researcher, we solely rely upon sponsorship