Nowgen launches Photo 2004 Human Genetics and Society competition
Nowgen, the North West Genetics Knowledge Park, today launches its 2004 photographic competition.
The competition has the theme Human Genetics and Society and hopes to attract a wide range of interpretations on how human genetics affects and influences life in modern society. The idea behind the competition is to create a novel and stimulating exhibition to display a selection of the photographs.
The exhibition will be launched at the opening of the new state-of-the-art Nowgen Centre in Manchester, planned for March 2005. It will then be taken on tour across the North West of England.
Three digital cameras, kindly donated by Olympus UK, will be awarded to entrants who it is felt convey the subject in the most striking and innovative way. The competition is open to everyone: members of genetic support groups, amateur or professional photographers, health care professionals, scientists, teachers, students and anyone else with an interest in human genetics. Entry is free.
For more information, and to receive an entry form, please contact: Stuart Nicholls on 0161 276 8947 Or email photo@nowgen.org.uk. Or enter online www.nowgen.org.uk/photo
Baby Hip Health leaflet launched
As part of Baby Hip Health Week STEPS launched a new guide to infant hip development. This is available as a downloadable PDF (2.6MB) or contact STEPS for your copy. You can also read our baby hip stories here
Charity Bike Ride
Brian Skinner is embarking on a bike ride that will cover approximately 356 miles! Brian will be setting off on Monday 7th June from the village of Longfield in Kent and his destination is Landsend in Cornwall on Friday 11th June. Enroute he will be passing through Kent, Guildford, Liphook, Petersfield, Eastleigh, Christchurch, Dorchester, St Austell, Penzance and finally Landsend. Brian is hoping to raise nearly £1,000 for steps.
Hilary Hot Foots it to Peru!
The office will be missing a staff member shortly. Hilary Hoyle (steps Helpline & Information Advisor) will be jetting off to Peru to walk the Inca Trail to Machu Picchu. steps supporters Sue & Laura Sharples will be joining Hilary for this mammoth but spectacular trek.
steps would like to thank everybody participating in all fundraising events. These funds are vital to ensuring that steps can continue to support people who can't take walking for granted.
Thank you to my mummy.Rebecca & Olivia Quigley has a great big reason to be proud of their mum. Both Rebecca and Olivia Quigley have DDH. Rebecca wasn't diagnosed with the condition until she was 41/2 years, her sister was diagnosed at 6mths. In spite of struggling to look after both of her daughters in hip spicas Tracey Quigley, Rebecca and Olivia's mum embarked on an epic fundraising project for steps. During her 12 month term as President of Northernden Social Club, Manchester, Tracy raised over £6,750. Tracey presented the cheque to Sue Banton, Founder and Director of steps and steps Chairman, Charles Murray at the Northernden Social Club on Saturday 2nd May. Sue Banton says, It was a fantastic evening. Tracey's hard work and the generosity of the club members will make such a difference to what steps can achieve this year, like funding the Baby Hip Health Week leaflets. We all owe a great big thank you to Tracey and her team.
2004 Flora London Marathon - Sunday 18th AprilWe had a good squad of runners in this year's race and steps would like to say a big Thank You to each and everyone of them! All of them finished and steps are very grateful to all of them for supporting us. Below are the list of runners along with their finishing times Rachel Kirk (5hr 18mins), Marion Kerr (5hr 21mins), Chris Yianni (3hrs 52 mins), John Burley (4hrs 1min 30 secs), Nick Brown (NYK), Janey Watson(NYK) and Jon Branson (3hrs 56 mins). If you would like to run for steps in next years race - contact Bev at the office on 0871 7170045 for more information. Forthcoming Dates for your Diary
Baby Hip Health Awareness Week - October 24th - 30th 2004The consensus of opinion is that it is best to begin treatment of babies' hips when they are small, ideally in the first 3 months. With this in mind all babies have a hip examination as a newborn between 6-8 weeks of age. This examination can only detect hip instability sometimes called Congenital Dislocated Hip or 'clicky hip'. Hip conditions that may develop more slowly like hip dysplasia (shallow and/or immature hips) are difficult to detect and may not become apparent until the child starts to walk. Everybody who cares for or works with small children needs to be aware of this, so that they can be vigilant for the signs that might indicate a problem with the hips. Baby Hip Health Week will raise awareness of care and detection issues. We are looking for volunteers to help us particularly in marketing and campaigning, families who are willing to 'tell their story' and anyone who can help to finance and manage the week. If you would like to get involved in any capacity contact sue at the office or by email: sue@steps-charity.org.uk
Family Day at LegolandPlans are afoot for this year's event, if you would like to join steps for a fun family day at Legoland Windsor on Saturday 30th register your interest and details will be sent to you when finalised. To register send an email to info@steps-charity.org.uk with LEGOLAND in the title and your contact details in the main body.
2nd Manchester
International Clubfoot Conference
Backrow Dr Zhivkov, Dr Pirani, Dr Miedzybrodzka, Miss Davis, Sue Banton, Mr Fernandes Front row, Dr Dietz talking to one of the delegates
We will be producing full reports on each of the speakers; in the meantime here are some summaries.
ECCE and Onwards:
An Update on the work of the Aberdeen University Clubfoot Research Group
Dr Zosia Miedzybrodzka,
Senior Lecturer in Clinical Genetics, University of Aberdeen
Five years ago the Aberdeen Clubfoot Research Group commenced its work to identify the causes of clubfoot (aka. talipes or non-syndromic idiopathic congenital talipes equinovarus to be precise). Only by understanding causation can we make truly informed advances in management and, perhaps prevention.
With the help of STEPS, VOK (the Netherlands clubfoot support group) and surgeons from UK and the islands of Vanuatu, we have established a major resource for the study of the causes of clubfoot. The collection comprises over 2500 DNA samples with corresponding questionnaire information. We are using this unique resource to study both environmental and genetic clues to the causes of clubfoot.
Clubfoot becomes manifest after 12 weeks of pregnancy, as the developing foot starts to rotate into its final sole on the floor position. This phase of development has been largely neglected by developmental biologists, at the expense of clubfoot research. We are studying the details of foot development to inform our gene hunting studies.
Thus far, we have unearthed some exciting clues to the causes of clubfoot, which need more detailed study before they can be made public. We look forward to keeping you updated with our progress.
Our work is funded by SPARKS, BBSRC, Wellcome Trust and the Royal Society.
zosia@abdn.ac.uk
Challenging The Clubfoot Tradition: Ponseti Method in Bulgaria
Miroslav Zhivkov,MD, Univ. Hospital Saint Anna, Varna, Bulgaria
The purpose of this paper is to describe the transition in Bulgaria between the traditional clubfoot treatment method and the application of Ponseti's one. This tradition usually consists of cast corrections by Kite with duration of 6-7months, which if unsuccessful, are followed by extensive operative corrections. The lack of modern standard for clubfoot cases leads to treatment of severe ones by less experienced hands.
This situation inspired us 5 years ago to look for alternative ways to improve the prognosis. After a series of intense correspondence with Prof. Ponseti, we began the application of his method. Until now, we have had 50 cases (80 feet), with only 3 needing additional operative procedure to achieve full correction. From all the cases we had, 10 babies were older (3-8 months), treated in another hospital and sent to us for operation. Even for those, Ponseti's method yielded excellent results. We discuss the wider application of the method in Bulgaria.
External Fixators
J A Fernandes, Sheffield
Different methods of treatment are used in Paediatric orthopaedics. External fixators are one of the modality which has come into vogue in the west for the last 20 years. The new concept of producing not only bone but regenerating other tissues when stretched or distracted has changed the management of many a paediatric orthopaedic condition . This credit goes to Prof. G A Ilizarov, from Kurgan, Siberia, Russia for his extensive research in the Tension stress effect and laying down the biomechanical principles of the application of the ring fixator. This has evolved with time and new solutions to many therapeutic problems is now possible.
This method now can be applied to bone or joints and even in tissues such as skin and also to improve blood supply to the limbs. Bones can be elongated or straightened, joint contractures can be corrected , increase height or stature, increase size or reshape stumps and feet, lengthen small bones, normalise pelvic balance, and also in treating benign bone tumours. Complex fractures can be stabilised, bone defects can be filled without bone grafts and as well as skin cover in open fractures. The percutaneous approach produces the least trauma to the soft tissues which are required for regeneration and therefore most beneficial in children who may require more than 2-3 reconstructive operations. This method now avoids the need to amputate limbs in many pathologies except for the most complex.
Unfortunately the treatment is prolonged and needs lot of attention to detail. Needs multidisciplinary input as well as positive dedication from families and children. Complications do occur and most of them can be managed with no permanent sequelae. This powerful tool if well used for the right indication and the right patient can produce some dramatic successful results.
This method of treatment will remain a workhorse in the treatment of complex congenital, developmental and acquired conditions and has changed the management of many pathologies.
The Uganda/Malawi Clubfoot Project: A Public Health Approach to Prevent The Neglected Clubfoot
Dr. Shafique Pirani.
Worldwide, there are an estimated 100,000 children born each year with clubfeet, 80% in developing nations, where surgical resources are limited. Many if not most clubfeet are thus neglected, and are a major cause of disability.
The Ponseti (Iowa) method, a specific sequential manipulation & casting method to correct simultaneously cavus, adduction & varus & lastly equinus (facilitated by percutaneous tenotomy of the tendo Achilles) followed by foot abduction bracing, offers hope of treatment for afflicted infants in developing nations, as it is largely non-surgical. Excellent results are reported from Iowa & others (short term results 235 out of 236 feet corrected/ long term outcome 78% good & excellent at 25 years).
The goal of the Uganda/Malawi Clubfoot Project is to make available to every child born with clubfeet in these two countries timely treatment with the Ponseti Method. Implementation strategies included a public health approach with awareness campaigns in cooperation with the Ministries of Health and cooperating non-governmental organizations, coupled with the training of more than 170 paramedical staff (orthopaedic officers & physiotherapists) from all health districts who have become the local clubfoot resource along with local manufacturing of abduction braces.
Pilot surveys of efficacy show that for infants completing treatment, deformity correction rates compare favorably to North America (33/40 feet corrected at Queen Elizabeth Hospital Clubfoot Clinic, Blantyre, Malawi/ 53 out of 64 clubfeet corrected at the Mulago Hospital Clubfoot Clinic, Kampala, Uganda). The Ponseti is showing great promise in preventing the neglected clubfoot in the African setting where surgical resources are scarce. Similar programs are being considered or underway in several other countries including Ghana, Honduras, and three states in India.
All abstracts published November 2003
NEWS ARCHIVE
07.08.03 - A Full Programme of Entertainment and Information on 15th & 16th November, at the Copthorne Hotel, Manchester. The steps Gala Dinner and the steps Public and Professional Conference - The lower leg -treatment and choices
The Copthorne Hotel is situated overlooking the regenerated area of Salford Quays. No events are organised for Saturday during the day, because we feel the area has so much to offer with shopping, culture and history. It is close to The Lowry Centre, the Lowry Designer Outlet Centre, the Imperial War Museum North and Manchester United Football Ground and Museum. Manchester is only a tram ride a way.
We have negotiated special rates for you to stay in 4 star luxury at the Copthorne Hotel on Friday 14th and Saturday 15th November. All rooms have ensuite bathroom, tea and coffee tray, minibar, colour TV with movie and satellite channels, direct dial telephone with voice mail, radio, trouser press and hair dryer. Price per double room per day is £65 inclusive of breakfast. There are a limited number of larger rooms which sleep up to two children at no extra charge for the room rate, so early booking is essential. Adjoining children's room incur a cost of £30 per room inclusive of breakfast. Single rooms are £55 each. Upgrades are available for those that like a little extra pampering. We can only guarantee these rates and rooms before the 3rd October.
If you wish to book at these rates please contact the hotel on 0161 873 7321, or email sales.manchester@mill-cop.com quoting steps and your requirements.
Gala Dinner
We hope to see you at our Gala Dinner on the Saturday evening. Not only will this be a fun packed evening for all the family - children are welcome with entertainment and a disco, we will be holding a very exciting charity auction and launching a very special appeal and project.
Conference Programme
We hope you won't party too hard all night - we have a fantastic programme for the Sunday. The focus will be on treating clubfoot but other lower limb conditions and general issues are covered.
We are really fortunate that so many experts are supporting us and sharing their expertise and knowledge with you. It is a unique opportunity to meet Fred Dietz who works with Dr Ponseti in America and Shafique Pirani who has introduced the Ponseti method to Africa and other developing countries. Zosia Miedzybrodzka, whom some will know through participating in the Genetic project, Exploring the Causes of Clubfoot in Europe, will be talking about the progress of the research and genetics in general, and James Fernandes will be talking about using external fixators. You will also get chance to talk to a nurse specialist in external fixators, an orthotist and a counsellor who will lead a discussion on making and living with decisions - something we all have to do.
This programme is a steps supported programme suitable for members of the public and health professionals. For more details open the poster. Feel free to display the poster in appropriate settings.
If you would like to know more about sponsorship opportunities click here
Children's Activity Programme
whilst the grown ups are busy, we have ensured the children will have fun. We have organised an ambitious programme for 0 to 14 year olds. The younger age group will be cared for in a crÊche in the hotel, staffed by qualified nursery nurses. The older group will be spending the morning at a David Lloyd activity centre and the afternoon at a craft centre. Coach transport and qualified escorts will be provided. This programme is free to children of participating delegates at the conference. There are only a limited number of places, so demand will be high, priority will be given to regular steps supporters- so make sure your subscriptions are up to date and allocation will be on a first come, first served bases, so get those booking forms in.
Booking
For any of the steps events please open the booking form (you will need Acrobat Reader ) and send by post or email to steps or for more information contact the steps office.
steps supports the European Paediatric Orthopaedic Society 22nd meeting
steps donated £500 from the Jane Bettridge Fellowship fund to support travel bursaries for doctors from Eastern European countries to attend the EPOS meeting in London at the beginning of April. David Hunt, Congress Chairman thanked steps for their generous donation which enabled doctors from countries with less well funded healthcare systems to attend.
Family Conference
The Lower Leg - Treatments and Choices.
Copthorne Hotel
Greater Manchester
Sunday 16th November
- The Ponseti Method
- Reconstructive surgery for feet and legs
- Living with treatment choices
- Update on the Exploring the Causes of Clubfoot in Europe study.
Talks in the morning, workshops in the afternoon.
There will be a crÊche and Children's Activity Programme
More details and booking forms for Legoland, the Charity Ball and the Family Conference will be published in the summer magazine, but if you want to receive a priority booking form please register your interest now.
2nd Manchester International Club Foot Conference
- The Ponseti Method - Making it Work
- The Lowry Centre
- Greater Manchester
- 17th & 18th November
steps is very pleased to be able to support this forthcoming conference. The Jane Bettridge Fellowship fund will be supporting an international forum of speakers including Fred Dietz, who works with Dr Ponseti in Iowa, USA, Shafique Pirani, form New Westminster Canada, one of the organisers of the Ugandan Clubfoot Project and Haemish Crawford, Aukland New Zealand, who is reporting on a Randomised Control Trial of the Ponseti method of treating clubfoot.
This conference is for health professional who are involved in the management of clubfoot.
This conference is now fully booked
Sunday 13th April 2003
steps would like to thank all runners participating in this event and wish them all the best of luck on race day. If you would like to sponsor any of our runners you can do this directly via our website on the front page 'donate now'.
Names to watch out for are Toby Carlsson, David Reed, Harvey Bootland, Matthew Bennett, Ian Wickham, Tina Doran, Deirdre Doran, Paul Dack, Jeremy Jarratt & Neil Fryman.
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