News Archive

Check out the ups and downs of how we’ve got to where we are now:

Lafora Update 30th June 2013

The WHDC is pleased to be able to publish the latest batch of Lafora test results carried out by Dr. Minassian’s lab in Canada. Once again, these show the rate of Affected dogs in the breed to be around 10% and we will continue to work with Dr. Clare Rusbridge to evaluate the progression of the disease in affected dogs.

Dr. Minassian and his team has worked hard to perfect what we all know is a technically challenging test. We are grateful to him for 
re-testing previous samples to ensure consistency, so that we can all be confident in the results.
 
The Lafora Test is already a Recommendation under the Kennel Club’s Assured Breeder Scheme and we are working towards getting the test ‘formally’ approved by the KC so it can become an ABS Requirement.
 
We are sure all responsible breeders will wish to demonstrate their commitment to eradicating Lafora Disease by supporting the test. Stud dog owners have a particular responsibility to ensure owners of bitches (pet or show) are made aware of their dog’s Lafora status. They should also be advising owners of bitches to have a Lafora test prior to mating and to follow the recommendations to avoid producing Affected puppies.
 
Anyone who is in any doubt as to the seriousness of the health issues associated with Lafora Disease should read the Owner Survey published atwww.laforadogs.org.
 
Finally, we would like to commend the commitment of all those Mini Wire owners who have supported the screening programme so far. Thanks to their support and patience, we have an extensive online database of UK dogs and their Lafora status. Together with a reliable test, we now have the ability to prevent any more Affected puppies from being bred.

 

 

Lafora Update 26th April 2013

The Lafora Testing Sub-Committee is happy to answer questions at any time, but we do ask that the information below is read in full first.

 We are pleased to announce that the next testing session for a full spectrum blood test (Clear / Carrier / Affected) will be held in early July (date to be confirmed) again at the Poole House Veterinary Hospital, Lichfield, Staffs. WS13 8JY. When we have the date confirmed we will post it here. We anticipate one or two further bulk testing sessions (to keep veterinary costs to a minimum and maximise the number of tests possible), date and venue tbc shortly.

 Costs of Testing:

 The current cost for each full spectrum blood test is 300 Canadian Dollars (approximately £190). In addition there are vet fees for taking the blood samples, sample kits and carrier fees for shipping the bloods to Canada, bringing the full price to approximately £225 per test.

 We have enough funds left to continue to subsidise tests with a third off the true cost for those who wish to participate in the WHDC scheme. This means that for all NEW animals tested, owners will only have to pay £150. Those owners who have already paid £80 for testing via Centogene, whether they have received an Affected / Unaffected result or are still awaiting the outcome, will pay £70 if they now require a full test. The £70 fee will only apply to the actual dogs already tested via Centogene, i.e. no substitute dogs will be allowed.

 The test cost for NEW animals of £150 means that the Breed Clubs and Kennel Club Charitable Trust are subsidising the actual cost of testing, including vet fees and shipping, by £75. This level of subsidy will enable us to test up to 200 more dogs and fulfil the conditions of the KCCT grant. We hope that any owner who has previously submitted dogs for testing via the WHDC scheme recognises that their financial contribution helps ensure the subsidised test is made available to as many dogs as possible, thereby playing an invaluable part in improving the health of the breed. In the unfortunate event that an owner of a Centogene saliva-tested dog requests a refund on their Centogene test, we will honour the refund.However in these circumstances, those dogs will not be eligible for the £70 subsidy towards the full spectrum blood test. We have contacted all owners who did not receive a result from Centogene and invited them to the April testing session. If these owners did not attend that session, they will be welcome to attend the next testing session.

 Forms for testing will be available from the middle of May (they are currently being revised). Test Forms will include an invitation to add a donation of £10.00 or more to a new fund being set up by the Laforadogs group, raising money towards providing support for owners of affected dogs. Any donors can opt to have their name/kennel name enrolled on a ‘Lafora Pioneers’ roll of honour on the Laforadogs website which will be linked to the WHDC database and other websites.

 Requests for forms should be made to:

Sue Holt (Susan.Holt@talktalk.net)

0161 308 4403

or

Nora Price (laforatesting@mypostoffice.co.uk)

01543 276797 or  01543 276797 FREE  

 Wherever possible, it would make administration easier if forms can be e-mailed out, completed and e-mailed back. Postal copies are fine for those that do not have access to e-mail and the address is:

Sue Holt

25 Glenmore Grove

Dukinfield

Cheshire SK16 4BH

 It will be first come first served and nearer the time people will be allocated a time slot for their test(s). Do not worry if there are not enough spaces on the first session. We intend to hold 2 more sessions of subsidised testing this year.

 What Next?

 When the funding for the subsidy has run out, tests will have to be done via owners’ individual vets and people will ship their own blood samples and liaise directly with Dr Minassian’s laboratory in Canada. Dr. Minassian has agreed that any UK owner of a Mini Wire Dachshund will be required to accept the condition that the results of testing will be notified to the WHDC Lafora Testing Committee for inclusion on the database.

 We are currently in discussions with the Kennel Club to seek their approval to make this test a requirement (currently a recommendation) under the KC Assured Breeder Scheme. Under the Breed Council’s Code of Ethics, it would also be an expectation that those who are not members of the ABS will make use of this full test before breeding from a Miniature Wirehaired Dachshund. 

 

Lafora Testing Update April 22nd 2013

The following update has been issued by the WHDC Lafora Sub-committee:

We held our second blood testing day on 17th April at the Poole House Veterinary Hospital, Lichfield, Staffs. WS13 8JY. It ran like clockwork and the veterinary staff were wonderful. In total we tested 45 dogs and the samples have been sent to Dr Minassian’s laboratory in Toronto.

By sheer coincidence we received an email from Dr Minassian during the late afternoon of the testing day, and here is what he told us.

WE HAVE IT !!!!!

Our new, older, technician, Hang Li, got the old forgotten Southern blot technique to work to perfection. We now have a wonderfully reliable test to distinguish wild-type (clear) from carrier from affected. Attached is an example of one of the Southern blots. You will see how beautiful and clear the test is.

 

We are all extremely pleased and grateful to Dr Minassian and his team for their hard work in perfecting this so that we can breed healthy dachshunds with confidence. The test will only be offered on blood (between 5 and 10 mls ideally)

When we have confirmation of the turnaround time from Dr Minassian, we will organise another testing day at the same venue – we expect this to be late June / early July and we anticipate being able to offer 60 tests on that day. If we have additional demand, we will book another summer testing day.

Dr Minassian has quoted us 300 Canadian Dollars per test (approximately £190). As we still have funds available supporting this project, we are still able to offer some subsidy. We will announce the actual fee people will need to pay nearer the time, as there is still some analysis to do on making sure we can test as many as possible, whilst offering support via the subsidy.

In the meantime, breeders can continue to use the information on the Wire Haired Dachshund Club web site – www.whdc.co.uk to check the status and background breeding of animals they are considering for use in their breeding programmes.

We will post any new updates here – thank you for your continued patience.

Lafora Testing Update April 19th 2013

On April 17th mini wire owners brought a total of 45 dogs to have bloods taken, to be sent off to the Canadian testing lab who initially identified a number of UK mini wires affected by lafora as early as 1996. To the eternal discredit of most of those breeding mini wires at the time, other than a few brave souls who tried to raise it, the research was swept under the carpet and ignored and as a result of continuing inbreeding, around 10% of mini wires may be affected today.

Fortunately, Ian Seath, Chair of the Dachshund Breed Council and leaders of many of the main Breed Clubs have a more enlightened view and they, along with a growing band of breeders who are passionate advocates of healthy dogs and pet owners with experience of the condition, have kept up the momentum, despite an underswell of inertia and in some cases downright obstruction from those with a vested interest in sweeping it right back under the carpet.

The good news is …. well, I can’t say yet, officially, but watch this space for news on something we’ve been waiting a long time to hear. 

Lafora Testing Update February 2013

The following update was posted on the WHDC website on 7th February:

 Since our last update, Dr Minassian has engaged an additional Research Assistant, which should speed up the perfection of the new (old) Carrier test method that will give us an acceptable turnaround time and cope with the volume.

 In the meantime, Dr Minassian and the laboratory team in Canada, are willing to accept blood samples for affected / unaffected tests, through the Lafora Group. The cost for the affected / unaffected test is £80. The blood samples will be retained so that, for those who want it, the DNA can be used to subsequently carry out the new (old) Carrier test when it is up and running (there may be an additional cost for this).

 To move this forward, we have organised a Testing Day on Wednesday 17th April 2013. The first people to be invited will be those who are still waiting for an affected / unaffected result from the Centogene testing. Then those requests that we have received whilst we have been waiting for the go ahead from Dr Minassian. Requests for new affected / unaffected tests need to be made either to:

 Sue Holt – susan.holt@talktalk.netor Nora Price – laforatesting@mypostoffice.co.uk

If the demand for the Testing Day on 17th April is greater than we can cope with in one day, we will organise an additional day and post details on the Wire Haired Dachshund Club website. Sue and Nora will be in touch with those who have already made requests, to confirm details and get the relevant forms completed.

 The testing day will again be held in the Midlands at the Poole House Veterinary Hospital , Lichfield, Staffs.WS13 8BY. We will allocate time slots as we co-ordinate requests.

 In the meantime, breeders can use the information on the Wire Haired Dachshund Club web site www.whdc.co.uk to check the status and background breeding of animals they are considering for use in their breeding programmes.

The WHDC will post any new updates here – thank you for your continued patience.

If you would like to help:

Check out our new ‘SCARVES’ page if you’d like to make a donation and buy a super snuggly Laforadogs Scarf!

Update 9th October 2012

The Dachshund Breed Council October Newsletter contained the latest update on Lafora Testing:

The WHDC Lafora Sub-group will be presenting an update of their work at the Breed council meeting on 21st October.

 In order to summarise the current situation, an updated list of “Frequently Asked Questions” (FAQs) has been prepared. This is available on our Health website here.

The questions include:

  • When will the full DNA test be available from Canada?
  • I have a Mini Wire that I want to breed from; what should I do?
  • I can’t afford the cost of a DNA test; what should I do?
  • What does a”Not Affected” test result mean?

Obviously, the key question everyone wants an answer to is when will the Canadian test be available. Sue Holt has been in regular contact with the lab who are working to streamline the testing process. As soon as we know, we will let people know. We are completely in the hands of the research lab and they are working to perfect a reliable method of identifying Clear, Carrier and Affected dogs using saliva and/or blood samples. The test is complicated and developing an approach that will be viable for large numbers of samples is proving difficult.

Anyone who needs additional specific information should contact one of the Lafora Team: Sue Holt or Nora Price.

The newsletter also includes a link to a fascinating article that was first published in the Kennel Gazette, which lays out the potential disastrous impact on the genetic health of a breed when popular sires are overused. Read more about it here

Update 10th June 2012 

Canada

 

The tests on the trial set of samples sent to Canada are now complete.  The team was able to identify affected, clear and carrier animals from blood and successfully achieved the same findings on saliva.  The results will be posted shortly on the WHDC Lafora pages.  The ratios are consistent with earlier findings.

Prior to the test going live, the Canadian team want to complete some further tests to ensure saliva findings will be robust.  Quote Dr Minassian.

 “I am analyzing the saliva and blood data we already have and some more experiments in progress carefully with the team to assess whether we are ready for exclusively saliva work at this stage or not.  I will write you soon, at which time I will also answer all the financial questions past and future.”

As soon as we have heard from Dr Minnassian whether testing can go ahead exclusively on saliva or whether blood samples are required, what the lab test prices will be and how many samples the laboratory can process at one time, testing can resume.  We will post an update here, including any details of additional charges although we will do our utmost to avoid / minimize these.  We will invite any previously tested with Centogene, who wish to have a full spectrum test, to submit samples in the same order that those tests were submitted to Centogene.  Those who are parents or progeny of Affected animals, if tested Unaffected by Centogene, will not need another test – they will be Carriers.

We expect this to be within the next two weeks.  We will place an update here and contact individuals who confirm they want a full spectrum test, in date order to invite them to submit samples (or organise blood testing if needed)

When all those from the Centogene cohort have had a full spectrum test, should they choose to, we will then invite new animals to come forward for testing.

Centogene

 

Centogene confirm that they are unable to obtain reliable carrier results from saliva.  They have sent us the majority of results for affected / unaffected now and the spreadsheet on here is now updated.  It is not looking likely that Centogene will be able to use saliva for full spectrum testing in the near future.  There are 12 results still outstanding form Centogene.  If they are not forthcoming, we will request these owners to be in the first cohort for testing in Canada.

Breeding Advice

 

Now that testing can identify carriers, it will be simpler to avoid producing affected animals.  The advice remains the same.  Avoid using Affected animals wherever possible, if using Carriers only mate to a tested Clear and then ensure progeny is tested and new owners informed if animals are carriers.

Update 23rd April 2012

DBC Breed Conference 23rd April 2012: An excellent conference attended by around 50 breeders and owners covering a variety of important issues, including a fascinating session on Epilepsy and Lafora by Elsa Beltran, Senior Clinician in Neurology at the Animal Health Trust, Newmarket. See a summary of the session here  and watch this space for further coverage. The Conference made an appearance  the Pedigree Dog Exposed Blog on the same day: http://pedigreedogsexposed.blogspot.co.uk/2012/04/dachshund-breed-council-job-well-done.html

 Update on Canadian Testing  Hopefully not long to go now before we know the outcome of the Canadian team’s testing of their beta saliva testing against their new, but proven, blood tests, which means it can only be a matter of days/weeks before carrier/clear testing can start rolling again.

Statement/Update on Progress on Canadian Lafora Testing

9th March 2012

As you’ll be aware the Canadian Lafora Research Team have requested a set of blood and saliva samples plus pedigrees from within the group of dogs that had previously been submitted for testing by Centogene. The reason for this is that they are hoping to perfect a saliva test by comparing results from a new testing procedure with their proven blood test, which they have recently reinstated. The WHDC Lafora Sub-Committee has been made aware of rumours/misinformation circulating and felt it was important to set the story straight.

How was the sample group selected?

Because the Lafora Sub-Committee is extremely aware of the huge frustration amongst owners awaiting test results due to the delays caused by the Centogene situation, it was agreed that this initial blood sample testing stage should be completed quickly in order that we could get back on track as soon as possible. We were already aware of a small group of breeders and owners who had offered, if/when the blood test was reinstated, to bring their dogs to one central location where a single vet could collect both blood and saliva samples. The cohort of dogs chosen includes dogs that are known to be Affected, those deduced to be Carriers by pedigree analysis and some we hope will be Clear (again from pedigree analysis).   We appreciate the offers from several breeders to have their dogs included in this research trial and we now have a sample of dogs that meets the requirements on the Canadian lab.

When will the sample testing be complete?

The Canadian Laboratory has requested that saliva samples are taken using a specific brand of testing kit which they have used successfully previously. These have been ordered in sufficient bulk to test the first sample batch and any other dogs from the full test group that may need testing.  These are currently being shipped, special delivery, direct from a Canadian medical supplies company. The intention is that the blood sampling of the 35 dogs will take place on 21st March and the Canadian Team have indicated that the results should be available approximately 3 weeks later.

What will the costs be for future testing and will there be an impact on the number of dogs that can be tested under the UK Lafora Testing Programme?

The intention has always been that funds contributed by the various breed clubs and the Kennel Club Charitable Trust would be used to subsidise the research and testing of as many dogs as possible within the 2 year period of the Lafora Testing Programme. The primary reason why the Centogene saliva carrier/clear testing was initially selected was a: it was offered at a cheaper price than the Canadian team were offering the same test; b: saliva sampling is cheaper and more convenient for owners to use than bloods c: the Canadian carrier/clear blood test was not then available and they had requested £24,000 in order to reinstate it , and d: as a research Lab, the Canadians originally said they couldn’t provide certification, but Centogene as a testing lab could. The Kennel Club indicated that they would require certificates to consider making the Lafora testing a requirement for their Assured Breeder Scheme.

 

Affected/Unaffected Test Prices

The Canadian team has not yet given us a price for the affected/unaffected test as they wish to see if they can perfect the Clear/Carrier test first.  We are working on the assumption that a Canadian Affected/Unaffected saliva test will cost the same as in 2010 (i.e. £80, with owners paying £50).

Carrier/Clear Test Prices

If the Canadians perfect the carrier/clear saliva test, we hope that the price will be within a similar range to that quoted by Centogene (i.e. £120), although we are still awaiting confirmation.

If the Canadians succeed in identifying Carriers from saliva, those people awaiting results from Centogene will instead have their tests completed in Canada (at no extra cost). If we can only identify Carriers by blood tests, not everyone will need to have this done; it depends on the known status of parents/offspring – for some, an affected/unaffected saliva test will be adequate.  In either case,  the Canadians have now indicated that they can provide certification.

 

There have been some rumours circulating that the carrier/clear blood test may cost as much as £250. We would like to make it clear that we are still awaiting confirmation of a final price from Canada for this blood-based test.  For the initial sample group of dogs, the Canadians are charging the Lafora Testing Programme £160 per dog, plus the cost of kits (£10), shipping and vets fees (one vet). We anticipate that when tests are done in greater bulk, the charge per dog is unlikely to be higher, hopefully significantly less. Again, it is anticipated that the Lafora research fund will be used to subsidise the fee charged to owners, although they will have to meet their own vet fees for taking the bloods.

The decision on the level of subsidy will be a balance between making the test as affordable as possible and maximizing the number of tests that can be subsidised over the 2 year funding period.

Will my dog be eligible for subsidized testing in Canada?

All dogs that have been submitted for testing so far will be eligible to take advantage of the subsidised testing programme in Canada, although as explained above not all dogs will need retesting.  Saliva swabs are still being accepted. These will be tested, along with those remaining from the German programme, as soon as the initial research with the blood/saliva is completed by Canada.

 

 

 

 

Lafora Testing Update 4th March 2012

 Following the confirmation from Centogene that they were not able to continue with our testing due to technical difficulties, we asked Canada to see if they could detect Carriers from the saliva provided by Centogene.  This was not possible, due either to the age and deterioration of the dna or due to the fact that the test is still not possible on saliva samples.

 To move forward, Canada are using their new carrier / clear / affected test on 35 blood samples, covering known Affecteds, known Carriers and presumed Clears.  Saliva from the same 35 dogs, is also being tested, to see if it is possible to perfect a saliva carrier test.

All other samples are on hold, pending the outcome of the above tests.  To perfect a saliva carrier test is proving extremely complex and we are very grateful for everyone’s support and patience whilst the research is being completed.

The breeding advice remains that:

  •  It is not advisable to breed from Affected animals
  •  Through pedigree analysis, endeavour to use assumed “clear” animals on known carriers, therefore reducing the risk of producing affected animals
  •  Carrier to carrier matings WILL produce some affected stock (refer to the guide on this site) and therefore these matings are not desirable.  All puppies form such matings should be tested to determine their Lafora status, so that new owners can be informed
  •  Swabs are still being accepted.  These will be tested as soon as the initial research with the blood / saliva is completed by Canada.

Any queries / enquiries, please contact any of the team, details on the January update.

Lafora Testing Update 21st January 2012

As you are all aware, Centogene have had major difficulties completing the testing on the samples we have sent so far.  Because of the considerable delays, we have decided to ask the Canadian research facility if they can complete all the swabs we currently have, and for future testing.  We are in discussion with Canada to finalise costings, timescales and the possibility of a blood or saliva based carrier test.  In the first instance we aim to have a complete set of affected / unaffected results from the swabs sent in so far as soon as possible.

We would like to thank you all for your patience and confirm that we are doing everything we can to get the tests turned around within as short a timescale as possible.  As soon as we have any news at all, it will be published here.  Individual queries can be directed to any of the team members.

Nora Price: laforatesting@mypostoffice.co.uk

Sue Holt: Susan.Holt@talktalk.net

Nina Dible: poodax@supanet.com

Gill Key: gillkey@btinternet.com

Ian Seath: Ian@sunsong.co.uk

 

Lafora Testing Overview and Update as at 16th January 2012

Introduction:

We are really grateful to everyone for their patience over the past few months and also for the high level of commitment shown by MW owners.  We will continue to provide regular updates on progress and our analysis of pedigrees, but any of the team are willing to answer questions at any time.  We are happy to offer information and advice about known carrier / affected animals based on our analysis of pedigrees, to support positive breeding practices and reduce the incidence of the disease.

Results:

Despite a promise that we would have all results by 16th January, Centogene have to date not issued all of them.  Everyone currently waiting for a test result will be informed of their results as soon as possible when we receive them and the database available at the WHDC website will be updated.  We have had 9 new results, 8 unaffected and 1 new affected. All results can be viewed on the WHDC website here

At present, we have test results from 173 dogs, we have identified 22 that carry two copies of the Lafora mutation and are therefore “Affected”.

Carrier Test:

Despite extensive trials, Centogene have not been able to perfect the carrier test on saliva swabs.  However, the laboratory will now trial the test on blood samples and we will report back here on the success of that.

We are also currently discussing with the Canadian team the possibility of them having a certificated, reinstated blood carrier test.  They are also pursuing research into a saliva carrier test.

Although it is disappointing that the carrier test has not so far been possible, the value of the affected / unaffected testing cannot be under-estimated.  This information enables us to be certain that all parents and progeny of affected animals will be AT LEAST CARRIERS and if these parents and progeny are tested as unaffected there will be no further need for tests, all of these WILL be carriers.

We are continuing to compile a database of information about dogs tested as affected and those clinically diagnosed as affected, so that we can gain as wide a picture as possible. We plan to identify their parents and all progeny, so that we can build our knowledge of the carrier population, whilst waiting for a full carrier test to be up and running.    As soon as it is available, we will publish details of what will be needed to complete a full carrier test.

It is still advantageous to do a saliva swab for affected / unaffected in the first instance, particularly now that we have test results and /or pedigrees for 300 dogs and especially if there is evidence of affected or carrier dogs in their background.  This applies equally to both breeding stock and dogs that are not, as early diagnosis of the condition means that dietary changes can be made that may affect the severity of onset in dogs identified as affected.

For many people, given the large number of results we now have, it may not be necessary to opt for a blood-based carrier test.  However, if a dog is unaffected from a saliva test and not a direct descendant of an affected dog, then the blood test will be needed (at present) to identify its carrier status.

Costs:

The test was priced at £80 for “new” dogs tested and £30 for those that had already been tested for affected / unaffected in Canada during 2010.  As a result of the funding we have received and renegotiating costs with Centogene, we are able to offer the current test at the same price as the 2010 Canadian test.  People can request £30 refunds or leave the funds “in the pot” for a carrier test when available, or to go towards a second saliva test.

This will be dealt with on an individual basis, so please contact the Coordinator after 31st January to discuss your preference.  Please note that Nora is on holiday from 13th to 27th January.

Breeding:

In the absence of a full carrier test, the advice on breeding remains that:

It is advised NOT to use affected animals for breeding.

Through pedigree analysis, endeavour to use assumed “clear” animals on known carriers, therefore reducing the risk of producing affected animals.

Carrier to carrier matings WILL produce some affected stock (refer to the guide on this site) and therefore these matings are not desirable.  However, if breeders choose to mate two known carriers, all puppies from such matings should be saliva tested so that their new owners can be told their Lafora status.

We are also working to see if we can develop a statistical model that, based on the test status of dogs and their ancestors, should calculate a predicted risk level for prospective matings.

 

 

Lafora Testing Overview and Update January 8th 2012

See latest test results here

Current Position

  • Centogene laboratory in Germany was chosen by WHDC in Summer 2011 as offering the best opportunity to take forward breed testing of miniature wire haired dachshunds for Lafora disease
  • Initial (blind) control sample successfully identified clear, carrier and affected animals
  • As testing progressed, it became apparent that individual genetic differences among carrier animals, prevented reliable and robust results (lab could not reliably identify EVERY carrier)
  • Centogene results for affected / unaffected, enabled us to identify all their parents and progeny as at least carriers
  • Centogene still working on perfecting the carrier test, they are reporting back by 16th January 2012
  • The database of results so far, with carriers highlighted from the identification of affected animals, is published
  • More results will be published ASAP after 16th January 2012, along with a further update.

In Depth Information

As many of you are aware, in 2010 the WHDC organized testing of saliva samples from 100 mini wires by a Canadian team researching human Lafora at theTorontoHospitalfor Sick Children (THSC) in order to establish what proportion of dogs might be Lafora affected.  The available test could only identify which dogs were affected and which were not, i.e. it could not identify any dogs that were carriers, (have one copy of the faulty Lafora gene).  The THSC team had previously developed a blood test that could identify carrier and clear dogs but that was no longer available at the time and still is not available.  The 2010 test results established that approximately 10% of dogs may be affected.  By extension, it was calculated that up to 40% of the currentUKpopulation of mini wires may be carriers.  These dogs would never show any symptoms but if two Lafora carriers were inadvertently bred together, then some puppies would be Lafora affected, and some would be carriers.

As a result, it was recognized that urgent action was needed to reduce the proportion of current and future affected dogs.  The WHDC and Dachshund Breed Council worked extremely hard behind the scenes for several months in order to raise funds from the various Dachshund Breed Clubs and the Kennel Club Charitable Trust in order to help pay for a large scale subsidized testing programme across the UK.  At the same time, there were extensive discussions with many organisations around the world, including, of course, the Canadian THSC team, to identify a laboratory that could:

  • Offer or develop a test that identified affected, carrier and completely clear dogs
  • Offer or develop a test that identified affected, carrier and completely clear dogs
  • Provide the test within a reasonable time scale
  • Provide certificates to prove the status of tested dogs
  • Do the above at an affordable rate based on the funding raised

As stated above, the Canadian team had no available carrier/clear test, indicated that it would take at least 6 months and a large financial investment to develop one, and even then, the cost quoted per test was significant.  In addition, they felt unable to offer any certification for tested dogs, which is critical to having the testing accepted eventually by the breeding community and Kennel Club. Therefore, based on all these criteria, the Centogene Lab in Germany appeared to offer the best option, as they were able to successfully identify affected, carrier and clear status of saliva samples in a blind trial, offer certification and quote a price which meant that potentially the funds raised could subsidise testing for up to 500 dogs.

The worldwide experience in genetic testing of Lafora´s disease is still extremely limited and the results of the Canadian group in 2005 demonstrated that the particular genetic mechanism which causes Lafora´s disease in dogs poses a major challenge to the identification of Lafora´s disease carriers in MWHDs. Since that discovery of the genetic background of Lafora´s disease in dogs, genetic testing methods have made significant progress and it appeared from the blind trial that Centogene had identified a successful method.  Therefore the WHDC testing programme was launched in summer 2011 with the promise that the affected/carrier/clear status of all the tested dogs would be available within weeks.

Unfortunately, Centogene’s subsequent testing of the next 96 samples revealed that the differentiation between clear and carriers was impaired by individual genetic differences of the investigated dog samples with even the newer methods.  In dogs, Lafora´s disease is caused by the expansion of a part of the EPM2 gene.  Expansion of the gene prevents at the end the biosynthesis of a protein.  Lack of that protein causes Lafora´s disease.  Centogene´s testing results demonstrated that differences in the length of the expansion had a strong impact on the ability to detect carriers of Lafora´s disease.  A short expansion could be detected by Centogene´s test while larger expansions could not be detected.  The expansion results in a structure which prevents the biosynthesis of a protein, but also impairs the application of standard testing methods.  In other words, they couldn’t be 100% confident that they could reliably identify every carrier.  When this became apparent Centogene asked for more time to try more sensitive methods of detecting these expansions and to continue testing further samples.  In December they requested and were given a final extension until Mid January in order to continue refining their testing methods.

Centogene will report back on their latest testing in two weeks time, at which point they will also provide the remaining results for the rest of the 200 dogs tested by them so far, including some that were sent back to them for further testing and quality control.  Owners of all the dogs tested who have not yet had their results will be contacted personally, and all the results will also be published on the WHDC website.

Whatever the outcome, results so far are already providing incredibly useful information:

In 2010 the Canadians identified 12 affected dogs from 95 samples.  Centogene has now tested a large cohort of MWHDs and identified a similar proportion of affected dogs.

Some of the dogs within the samples tested by Centogene already had clinical symptoms of Lafora´s disease and/or had already been identified as affected by Canadian testing and in every case, Centogene also identified these dogs.  By extension, this demonstrates that the Centogene lab can also detect dogs which will develop Lafora´s disease in the future.

Owners of newly identified affected dogs identified so far by Centogene have been informed and have been able, as a result, to take action to manage the disease from an early age, for example by adjusting diet to reduce the amount of starch in the diet.  It is hoped that this action may reduce or even prevent onset of the severest form of the disease in later life.

We would like to emphasise that this is still a very low proportion of the total population of MWHDs, but it indicates that Lafora´s disease is more frequent than the 5% reported by the Canadian group in 2005, and around 10% may be affected.

Affected dogs will always transmit the expanded EPM2 genes (Lafora genes) to their offspring.  Dependant on the genetic status of the other mating dog the offspring will be at least disease carriers or affected dogs.  Identifying affected dogs has potentially the largest impact on reducing the frequency of Lafora´s disease.

We now have a revised database of the results of all Lafora testing, both inCanadaandGermany, along with details of dogs that by extension, because either their parents or progeny are affected, must be at least carriers.

Reducing the so-called gene pool (number of dogs participating in breeding programs) would have potentially detrimental effects on other inborn diseases.  It would have a benefit on Lafora´s disease maybe at the expense of increasing the number of dogs suffering from other genetic diseases.  It is likely that carriers need not be excluded from breeding, providing they are only mated to clear dogs.

Note that costs for the refinement of Centogene´s test as indicated above are carried by Centogene and are not at the expense of the Wirehaired Dachshund Club.

We ask you again for continued patience and understanding that we are dealing with a difficult disease.

Laforadogs Newsletter

10th June 2011

See below for the full text of the WHDC/Dachshund Breed Council Press Release:

The Wirehaired Dachshund Club and the Dachshund Breed Council are pleased to announce the launch of a full DNA screening programme for Lafora Disease in Miniature Wire-haired Dachshunds.

Lafora Disease is an inherited, late onset, progressive myoclonic epilepsy which is believed to affect up to 10% of UK Miniature Wire-haired Dachshunds. The condition typically becomes apparent after normal breeding age and progresses slowly over many years. There is no cure and management of the condition can be difficult.

The DNA test will be provided by Centogene, a German laboratory that has been offering a Lafora test to humans. The test, using cheek swabs, will identify “Clear”, “Carrier” and “Affected” dogs for the EPM2B Lafora gene mutation. Previously, the only test available could not differentiate between “Clear” and “Carrier” dogs.

In addition to screening for the known EPM2B mutation, a cohort of dogs will be able to have a full gene sequencing research test carried out in order to establish the extent of any further mutations that may be associated with Lafora Disease.

Nina Dible, Chair of the Wire-haired Dachshund Club said: “Our 2010 Lafora screening programme highlighted the need for a full DNA test and I am delighted that we are now able to launch this programme. I hope it will be fully supported by the Mini Wire community. It gives owners the ability to avoid breeding any more Lafora Affected dogs and we have a real possibility of eventually eradicating this harmful mutation from Mini Wire Dachshunds. I am also hopeful that we will be able to establish this as an official test, recognised by the Kennel Club”.

Nora Price has been appointed Programme Coordinator and all tests will be arranged by her, supported by Christine Gibson and Jo Lavin (WHDC Committee members), following a protocol agreed with Centogene and the Kennel Club. The costs of participating in the full screening programme are still being finalised and anyone who tested their dogs in 2010 will be given preferential rates.

Owners of MWHDs wishing to have their dogs tested should contact Nora Price.

E-mail: laforatesting@mypostoffice.co.uk (Tel: 01543 276797)

Further information on the screening programme will be published over the coming weeks.

As yet, they haven’t had final confirmation from the Kennel Club Charitable Trust that they will contribute to the cost but theDBC have managed to broker a very good deal with the German Lab which means that it will be much more affordable for the WHDC to be able to subsidise the testing from the funding they and the other clubs have made available to help keep the test at a price which should be affordable for breeders and pet owners alike. We still have high hopes that the KCCT will come up trumps with the money which means that the programme can be extended and publicized as widely as possible.

As the press release above mentions, it also hoped that the Kennel Club will recognize this as an important DNA test which should be considered as a requirement for Accredited Breeder status and perhaps more importantly, a test that is recorded in their Mate Select service, launched in May:  http://www.the-kennel-club.org.uk/services/public/mateselect/Default.aspx. Ian Seath, Chair of the Dachshund Breed Council, announcing the launch said recently:

The site enables breeders to:

  • Find the health test results of individual dogs
  • Find out the Coefficient of Inbreeding of an individual dog

Find the Coefficient of Inbreeding of an entire breed

  • Predict the Cooefficient of Inbreeding of puppies from a proposed mating.


At the date of launch, the CoI values for each of the Dachshund varieties was as follows:

Smooth = 8.2%, Mini Smooth = 8.1%, Long = 8.6%, Mini Long = 7.6%, Wire = 6.7%, Mini Wire = 11.3%
For comparison, some other popular breeds have the following CoI values:
German Shepherd = 3.2%, German Shorthaired Pointer = 5.3%, Golden Retriever = 9.5%, Pug = 6.5%, Cavalier = 5.2%, Pekingese = 7.4%

The higher the CoI, the greater the probability (and risk) that two copies of a particular gene will be inherited from a common ancestor.  The KC will no longer register puppies from mother/son, father/daughter or brother/sister combinations  – these would have a CoI of at least 25%.

The Breed Council will be monitoring changes in each Dachshund variety’s Coefficient of Inbreeding over time and strongly encourages breeders to make use of Mate Select to help inform their breeding strategies.

 

The inbreeding stats for Mini Wires are pretty horrifying as it stands but I am sure you’ll agree this is a fantastic step forward to helping breeders make responsible breeding decisions in the future to help reduce the incidence of such inherited conditions.

I’ve heard back that both the Kennel Club and WHDC have reported that they have been inundated with emails and letters from pet owners and breeders supporting the programme so a huuuuuuuuuuge thank you to all of you for your help and support so far, particularly those of you that have sadly lost your own dogs to this horrible condition already and therefore do not have a vested immediate interest in making the test available. I’ve read a lot of your emails and have been incredibly moved by some of them. With permission, I will shortly be publishing some of them on the Laforadogs website …. As soon as I can because I really should do my day job some time!

The details of the testing programme, price and promotion is still under discussion, but I hope I can rely on all of you to, encourage people to register their interest now and help spread the word more widely amongst dog owners, breeders and importantly vets as soon as we have a really clear message to give.

I’m over the moon, but this is where your support is going to be even more important.

Thanks again, will let you know more soon.

Gill ;-)

Laforadogs Newsletter

26th April 2011

- to join our email newsletter, send an email to laforadogs@btinternet.com with the word ‘join’ in the subject heading and if possible a brief explanation of why you want information.

It has been a while since I sent you an update on the latest with Canine Lafora, mainly because there has been very little to report as we have been awaiting the outcome of various events. However, there is some news and hopefully more to follow soon. Apologies to those of you living overseas or who have dogs other than Mini Wire Dachshunds, but hopefully the progress being made in the UK with this particular variety may well be of interest for your own circumstances.

Dachshund Breed Council (DBC)’s April newsletter

 Included a brief mention of Lafora testing:

The Wirehaired Dachshund Club presented an update on the Lafora Testing situation and hopes to be able to make an announcement on the planned next steps to implement a full screening test to identify “Clear”, “Carrier” and “Affected” dogs within the next two months. An application has been made to the Kennel Club Charitable Trust  (KCCT) for funding to support the testing programme and the Breed Clubs have committed to provide a matching amount of money. Information for owners of dogs affected by Lafora Disease can be found at www.laforadogs.org as well as an information sheet on the Council’s Health website.

German Lafora Testing

 It is probably useful to give a little more detail on the DBC’s report above. Because until now it was only the Toronto Children’s Hospital who offered canine Lafora testing, and their current test can only identify ‘affected/non affected’ dogs, it has been difficult for breeders to take responsible decisions about breeding dogs without having full knowledge about their Lafora status. If on the other hand it is known which dogs are carriers (i.e. carries only one Lafora gene) and which are clear as well as which are affected, it is possible to pair up dogs to dramatically reduce the number of affected dogs born without reducing the gene pool so much that there is a danger of introducing or escalating other equally horrible conditions (see Lafora genetics RAG chart April 2011, reproduced with the permission of the DBC).

The Toronto Hospital can set up a canine carrier/clear/affected test – which could take a further 6 months … and would cost owners several hundred pounds per test. However, it became apparent that there are Testing Laboratories around the world who offer testing for the Human form of Lafora. After considerable research, eventually a lab in Germany agreed to test some dogs for the canine version. Several people (including some of you receiving this email) were generous enough to contribute samples from their own dogs whose  status was already known through previous testing. Samples were sent off to Germany to be tested ‘blind’, i.e. without the lab knowing whether samples were from affected,  presumed carriers and known clears (the latter from different varieties of dachshund). The results have now come back and they are looking very promising, although there are still a few points for clarification. This means that an alternative to the Toronto test should be available much sooner than otherwise. Watch this space for further news – if anyone needs details of the German lab, please contact Ian Seath at the DBC on ian@sunsong.co.uk

Funding

 Even if the German testing goes ahead, individual tests could still be expensive. It is therefore fantastic news that the various Breed Clubs have already agreed to provide a substantial contribution to encourage a widespread testing programme right across the UK, presumably via some form of subsidy. The DBC has also applied to the KCCT for funding support and we await their decision.

A Request for Supporting Evidence

I am putting together a package of supporting material for the Breed Council to forward on to the KCCT to reinforce the message about the impact of Lafora on affected dogs, their owners and indeed on breeders, particularly smaller/amateur breeders who may be either delaying further litters until there is a clearer picture or maybe finding it difficult to sell their dogs to owners who have heard of Lafora and are reluctant to commit without knowing the status of the puppies. Therefore if any of you can contribute anything from a few words to a full blown essay I would really, really appreciate it. I will compile all the information together and forward it to help back up the case for funding. Deadline midnight Monday 2nd May please.

Raising Awareness Amongst the Veterinary Community

Once the decisions on testing and funding are clearer, there will be information published about the Testing Programme in the veterinary press and elsewhere. However, in the meantime, I continue to hear about vets who have seen dogs with Lafora-like symptoms who have never heard of it, or who have not recommended testing – and in one notable very recent case, I have even heard of a dog referred to a neurologist who apparently didn’t suggest getting the dog tested! Therefore, once again, can I ask that you pass on copies of the Dach-Facts Lafora V2 June 2010  leaflet to any vets you know, and indeed on to any dog owners who might also pass it on, even if they don’t own a mini wire, beagle or basset hound?

And Finally ……

I’ve become aware through the Canine Lafora work that there is a small group of human teenagers who  are also affected by the disease, which in their case currently always has a fatal outcome. The symptoms are the result of a genetic blip which means the body can’t properly process carbohydrates into sugars for energy. Instead, some of the carbs turn into starchy deposits in the brain and the central nervous system. There is some hope with various research programmes for humans at least, including one looking into how to supplement the body’s ability to process the carbohydrates properly, thus reducing the number of Lafora bodies produced. Raising the funding to pay for such research is a constant battle, particularly as so few people have heard of the condition (something I have certainly also experienced with the canine form).

The ‘Chelsea’s Hope’ group, named after a teenager who has the disease, is raising funds and awareness and they have entered an online competition to have a branded car in a real Nascar race in the USA in May.  As you’ll see below, they have got through to the final, so I’m asking if you could take a few seconds to vote as well, ideally each day, and possibly pass it on to friends etc., as Alice, the mother of one Lafora teenager in Jersey asks:

“Hello all my dear friends.

We have got through to the FINALS of the NASCAR race and now URGENTLY need all your votes to help us WIN……..  This will be HUGE for John and all the other Lafora children in so much as,  if the Chelsea’s Hope car wins, the car will be designed and driven in the Nascar Race in May raising HUGE awareness of LAFORA BODY DISEASE.

John is back in hospital again with pneumonia and the voting started again on 22nd April, so unfortunately, I have missed advising everyone.  PLEASE PLEASE PLEASE, take the time (it is only about 30 seconds of your time each day until early May) to click on http://www.chelseashope.org/, scroll down the page to the link and you’ll be directed right to the Chelsea’s Hope car were you just click on ‘vote’. PLEASE pass this on to all your friends and if you have more than one computer in your home, you can vote daily from each computer, IPhone, phone etc.  Put it on your facebook, twitter site or anything else you can think of that will alert people to VOTE. THIS COSTS ABSOLUTELY NOTHING, only a little bit of your time each day until May 1st.  TIME IS THE ONLY THING JOHN AND THE OTHER LAFORA CHILDREN DON’T HAVE. PLEASE HELP.

Thanks to you all, Alice xx”

Many thanks for your help in anticipation. If you don’t wish to receive future emails please let me know. Otherwise I’ll be in touch ASAP with the latest news.

Regards,

Gill

For www.laforadogs.org

Laforadogs e-newsletter 7th April 2011

Very brief – lots of things going on behind the scenes to support improved testing for Lafora …. watch this space for news soon! Meantime, if you are thinking of breeding any dog from a breed with a known history of Lafora (or indeed many other genetic conditions), do check out the new Lafora Genetics diagram on our About Lafora page, which graphically illustrates the importance of following responsible breeding practices.

Laforadogs e-newsletter 21st December 2010

  • As promised, the Wire Haired Dachshund Club has now published the results for all 95 dogs in the recent controlled test of mini wire dachshunds. You can see the results at the WHDC website: http://www.whdc.co.uk/lafora-test-results.php. As stated previously, the pedigrees of the affected dogs are being sent to Canada in order to help identify ‘carrier’ lines. Almost inevitably, once the results have been made known, there has been some (a very little) negativity (see below), but the Club is doing everything it can to reduce this and it is hoped that we can all give the WHDC our full and positive support to ensure that the whole community works together to minimize and hopefully eventually eradicate this condition.
  • Latest Breed Notes issued Friday 17th December  – please read in conjunction with those published on 10th December below:

‘I have already reported on the WHDC’s Lafora testing results, and the fact that from 95 samples tested, 12 dogs were found to be affected, which is a much higher of incidence than was previously thought. Sadly, now the results are out with the individual owners, rumours are flying around, and some people are doubting the results. Already there is talk of a witch hunt. There is no witch hunt, and this was made very clear when the testing was introduced. Every Miniature Wirehaired owner/breeder must surely want to breed away from this condition. No-one is at fault for the existence of the disease, and because the age of onset is after normal breeding age, there is no way anyone can be thought to have deliberately bred from Dachshunds with Lafora.

 This is a time for Miniature Wire breeders to work together, not put up barriers. If anyone believes their results are incorrect, please contact the WHDC. No-one has done so to date. You could also ask your vet to contact Clare Rusbridge – especially if you are the person whose dog has apparently received a non-affected result and you are saying your vet has been treating your dog for Lafora for two years.

 Most people I have spoken to seem to think that a substantial sum of money should be invested by the dachshund world in developing a test to distinguish between Dachshunds who are clear of Lafora and those who are carriers. Anyone who believes they have evidence the results are incorrect should not be spreading rumours, that is just irresponsible, they should be making sure any possible inaccuracies are investigated before a financial commitment is made.’

  • There is a huge amount of work going on at the moment by the WHDC, Dachshund Breed Council and indeed all the Breed Clubs to keep the momentum up. Emails and phone calls are whizzing backwards and forwards, magazine and website articles created with the intention of raising awareness,  gathering the support of breeders (most of whom are extremely positive about helping) and finding the funding to reinstate the carrier/clear test not only for this year but for following years. This is all being done to extremely tight deadlines and it is hoped there will be significant news fairly early in the new year. If anyone can suggest any other sources of financial support please do let me know as soon as possible.
  • Clare Rusbridge has been approached by a drug company that wants to do a therapeutic trial for Lafora dogs. She is still gathering details but if anyone is interested in this then please get in touch with her. Please use: stonelion@goddardvetgroup.co.uk, and in the subject line write:  F.A.O. Dr Clare Rusbridge: Therapeutic Trial for Lafora Dogs. Don’t forget to include your name, your address and your dog’s name/age.  If you need further information first, drop me an email.
  • Clare may also be interested in investigating the possibility of setting up a trial on diet and the impact it may or may not have on Lafora symptoms. This is at a very early stage and depends on how many people might be willing to take part. If anyone would like to be involved, contact ME in the first instance so that we can get an idea of numbers first. I see no reason why this should be limited to only mini wire dachshunds, but will find out.
  • If you know of anyone else who would like to receive these emails, or if you wish to stop receiving them, please do let me know.

Finally, may I wish everyone a very Merry Christmas and  Happy and Healthy New Year for yourselves, your families and of course your dogs.

Laforadogs Group e-newsletter December 15th 2010

(if you’d like to receive this, please email me on laforadogs@btinternet.com)

Dear all,

This email for the first time has an international dimension as I’ve recently had contact from several people around the world who’s dogs (none of which are mini wire dachshunds) are showing Lafora-like symptoms. To all of you, welcome to this irregular e-newsletter, which I hope you will find useful and informative, even if much of the focus at the moment is on what is going on here in the UK with mini wires! To all of the people on my email list

 Lafora in UK Mini Wire Dachshunds

 The Dogs World Breed Notes below, written by Lesley Patton, past Chairman of the WHDC, were published in Dogs World on 10th December.

“The WHDC has now received the results from the DNA swabs taken to test for Lafora’s disease in Miniature W/h Dachshunds over the period end March to mid July.  96 samples were taken, of which 95 had sufficient DNA to test.  Twelve dogs were identified as “Affected” and, of these, three were already known to have the disease.  This incidence is higher than was expected, at around 12 per cent.  All who submitted tests have been contacted and, in every case, if the result was “Not Affected”, it has been explained that this does not mean the dog is “Clear” of Lafora’s disease; it could still be a “Carrier”.  It is vitally important that all Miniature Wire breeders understand this.

 At present there is no test available to distinguish between “Clear” and “Carrier” dogs – this was explained to everyone who brought their dogs to be tested and indeed it was the reason that some breeders decided not to have their dogs tested.

 The researchers at the Canadian hospital who carried out the tests have requested five-generation pedigrees from every dog tested to help identify “Carrier” lines, to enable Miniature Wire breeders to breed away from this debilitating disease, and there has been an excellent response to this so far, with more than a third of the pedigrees submitted already.

 The WHDC, the Miniature DC and the Breed Council will be discussing these results with the Kennel Club to decide on the appropriate action to take next and everyone will be informed.”

Although the sample tested was self selecting which means that inevitably the proportion of affected is likely to be higher than in a true statistical sample, the new WHDC Committee are taking these results extremely seriously.

The names of all the dogs involved in the recent testing will be published in the ‘Live Wire’ (WHDC magazine) shortly after Christmas, and they will also appear on their website.  The Committee met at the weekend and unanimously agreed that they would go ahead in actively seeking out every possible avenue for funding to pay for a carrier/clear test to be developed quickly. If any of you can help with this in any way, please do let me know.  

If you know of any further pet dogs confirmed as being Lafora affected, but who’s pedigrees have not yet been passed on to the WHDC, could you please forward them to me and I will add them to the database I’ve been asked to compile to add to the tested dogs’ pedigrees mentioned in Lesley’s article.

More news to follow.

Lafora In Other Breeds and other Countries

 As I said above, I’ve had contact recently from owners of dogs other than mini wire hair dachshunds who are reporting that their dogs also appear to be suffering from Lafora. Some of you have had a huge fight on your hands to even convince your vets to consider that Lafora might be a potential diagnosis. Currently the only breeds that are proven to have any incidence of Lafora in them are mini wires, beagles and bassets.

It is very possible that other brain conditions or forms of epilepsy might show very similar symptoms to Lafora (though these are pretty distinctive). Therefore it is extremely important that any dog displaying these signs is tested specifically for Lafora (see http://laforadogs.org/lafora-management/how-to-get-your-dog-tested). If the dog were proven to have Lafora, this would have very serious implications for both the breeder and the whole breed, so the dog’s breeder should be alerted as soon as possible, as well as any Breed Clubs or Breed Councils. I’d be very happy to help with this process if needed, but without having the evidence of a positive ‘affected’ test, then it would be irresponsible to say the condition is present.

However, do keep in touch because much of the advice on the Laforadogs website may well be applicable for your dog (e.g. diet pages etc.). Shortly I’ll be posting the very touching stories and photos you’ve sent to me on a special page on the Laforadogs website , particularly as some of these dogs have recently been put to sleep. (Christmas and work is rather getting in the way at the moment, so please bear with me on getting this done).

Very many thanks and a Merry Christmas and Happy New Year to you all.

Results of WHDC Controlled Testing are Imminent

Since the swabs taken for the WHDC controlled tests were sent to the Toronto Hospital for Sick Children in early July, we’ve been waiting with baited breath for the results. Just how many dogs are still affected? We’ll soon know the answer, because the latest from Lesley Patton, Chair of the WHDC, is that they should be back at the end of October.

Kennel Club Accredited Breeder Scheme Recommends Lafora Affected DNA Test

From July 1 2010, the Kennel Club now recommends that any dogs used for breeding by members of their Accredited Breeders Scheme should be tested for Lafora. Currently the only test available is that for affected/unaffected, which means it is only possible to identify those dogs who have inherited one faulty gene from each parent and are therefore affected. This particular test does not identify any dogs carrying a single gene, inherited from one parent (carriers).

It is to be hoped and indeed we would strongly recommend that NO affected dogs should be used for breeding as all puppies bred would be at least carriers and tragically, if the affected dog were unwittingly bred to a carrier dog, may even be affected. 

Unfortunately, until a carrier/clear test is available, it is still possible that two carriers may be unintentionally bred together. In this scenario, on average , 25% will be clear and 50% will be carriers and 25% will be affected

There is therefore a moral dilemma – should any potential carrier dog, such as any puppies bred from a proven affected dog be used for breeding when we have no means of identifying whether their breeding partner is a carrier?

In an ideal world, the answer is a big round NO, and those of us who have seen the suffering of Lafora dogs ask individual breeders should think long and hard before making such a decision, and do a great deal of research into the pedigrees of both the direct line of the both potential breeding partner and the siblings of dogs a generation back to find out if any have been affected by Lafora in later life. 

However – there is another side. With so many other potential genetic timebombs out there, any reduction of the genetic gene pool to avoid passing on serious conditions may result in further potentially lethal conditions rearing their heads. Already,  there are readily available to dachshund breeders cheap DNA tests to identify dogs with a higher chance of developing IVDD (back disease, which is fatal in many cases) as well as a plethora of tests for various eye conditions. Who knows what other horrors are lurking under the surface ready to make their appearance in a compromised gene pool? 

The sooner the results of the Controlled Testing programme are known and a decision can be taken on rolling out the carrier/clear test – preferably at a reasonable price  and available in the home country as well as Canada, the better for all.

Meantime, we applaud all breeders prepared to stick their necks out and have the affected/unaffected test. It is a long way from perfect but it will at least reduce the chances of breeding puppies sentenced to the consequences of this dreadful condition.

If you would like to add your support to having a UK based carrier/clear test reinstated as soon as possible, please contact us via the website or laforadogs@binternet.com.

WHDC Controlled Testing Complete

At the end of June 2010, samples from nearly 100 mini wires were sent to the Toronto Hospital for Sick Children in order to identify if and which dogs were affected by Lafora. We are very grateful to the WHDC committee members who agreed to subsidise this programme, to the WHDC members who gave their time to taking the samples, and particularly to all the owners who paid for their dogs to be tested. Many of those who participated were ordinary pet owners, but it was great to see that several very well known and successful breeders also supported the testing programme, in the face of some active disuassion by certain other well known personalities in the mini wire world ……

Download information leaflet here: Lafora Disease Pamphlet v10

PRA Testing in Mini Wires

Off topic, I know, but still important for us mini wire owners. PRA is a genetic eye condition which can lead to blindness and even eye loss. It is known to affect mini smooth and long hair dachshunds and it seems it may also be in the mini wire population too. As a result the Animal Health Trust has offered to test up to 50 mini wires of different parentage to establish how widespread the condition is. Read more here:  Microsoft Word – Research Test for Cord 1 PRA in Miniature Wires .

Stop Press - Carrier Testing Under Threat

Because the take up of the ‘affected/unaffected test at the WHDC show hasn’t been good (see below), there is a strong possibility that the WHDC will decide not to help fund the reinstatement of the carrier/clear test, which is the key to reducing the number of dogs born as affected or carrier. We believe that there are many good reasons why the take up of the test at the show – prior committments, distance, travel problems, but we have also been told by many breeders that their principal interest is in having the carrier/clear test.

what can you do?

Email Lesley Patton at  lpatton@lesandnic.fsnet.co.uk, cc’ing to philip_rollinson@msn.com (WHDC Secretary) and Ian Seath ian@sunsong.co.uk (chair of Dachshund Breed Council) to express your support for Lafora testing! Please do this now!!!!!!

Important Announcement from Wirehair Club

Lafora Disease

The WHDC will be arranging a saliva testing session at our Limited Show at Horspath on Saturday 27th March, 2010. Swab samples will be taken from the mouth, and sent to Canada for testing, so results will not be available immediately.

The test will cost £50 per dog, and at first will be limited to members (there are no restrictions on membership) as the Club will be subsidising the costs. The Club would like to encourage all miniature wire haired dachshund owners to have their dogs tested, if they are planning to breed from them, so that affected or subclinically affected dogs can be identified. The parents and offspring of any dogs identified by the test as affected would then be known to be either affected, or carriers, with no testing necessary.

Ideally, those dogs identified by the test as affected should be removed from the breeding pool, immediately reducing the incidence of Lafora’s disease. The Club hopes to test enough dogs to help identify the incidence of the disease in the miniature wire population.

Anyone interested in having their dog tested at Horspath should contact Lesley Patton on 07736-431090 (after 8pm only), email:lpatton@lesandnic.fsnet.co.uk, or come to the WHDC stand at Crufts. Tests will need to be booked – on a first come first served basis – and KC registration documents will have to be produced for each dog tested.

For details of show see: Wire Show .

…………………………………………………………………………………………………………

Please print, or ask for printed copies of our  our publicity pamphlet about the testing programme :Lafora Test Pamphlet

Members of the Lafora Dogs Support Group strongly support this initiative. Read the letter send to Wirehair Club for discussion at meeting on 18th Feb, cc’d to representatives of Kennel Club, Dachshund Breed Council, Miniature Club: Letter WDB

 

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