Resources Sheet for Canine Chiari-Like Malformation and Syringomyelia
Information about Syringomyelia from around the world with different expertise and perspectives
• www.cavaliermatters.org/ Cavalier Matters is a beautifully illustrated website devoted to Cavalier King Charles Spaniels. It is committed to providing easy to read information, covering a wide range of topics particularily suited to pet owners. • www.fortheloveofollie.com Sandy Smith, a cavalier pet owner and health campaigner and who has written a best selling book for fundraising. For the Love of Ollie; a story of compassion and courage and simple explanation of the disease and treatment.
• http://sm.cavaliertalk.com/ Karlin Lillington, Irish Times journalist who runs a cavalier rescue service. She has a fully comprehensive information and resources site specifically on Syringomyelia and hosts a discussion forum and support group.
• www.cavalierhealth.org Rod Russell cavalier owner in Florida, USA. Excellent informative website on a huge range of diseases in cavaliers including a large section on Syringomyelia with pertinent references to the States.
• www.premiercavalierinfosite.com/syringohydromyelia.htm Laura Lang a dedicated cavalier breeder in the USA provides an information site with from the breeder’s perspective.
• www.cavalierkingcharlesgilde.nl/. Not a Breed Club but a group of 5 Dutch breeders who were among the first to screen their dogs for Syringomyelia using MRIs. Dana Schuller-kuyper was the first breeder to arrange ‘MRI screening days’ for cavaliers. • http://www.cavaliercampaign.com/ Carol Fowler tells the story of her campaign to improve the health of pedigree dogs by raising awareness of Syringomyelia. She hopes it will help to achieve fundamental change in dog breeding in which the health and welfare of dogs is paramount.
Some Breed Clubs which have Syringomyelia information and additional links
Support for owners and families - www.smcavaliertalk.com Karlin Lillington manages this Board primarily to provide accurate information and support for pet owners and families affected by syringomyelia and other aspects involving health and
Forums: Sometimes just finding out information isn't enough - you may want to discuss concerns or perhaps your experiences can help others. www.smcavaliertalk.com Karlin Lillington manages this Board primarily to provide accurate information and support for pet owners and families affected by syringomyelia and other aspects involving health and welfare.
“For the Love of Ollie” written by Sandy Ross Smith in Canada. The concept evolved with the help of other pet owners and breeders experiencing the same misfortune. In an effort to raise awareness of this disease and assist in the search for a cure, Sandy Smith describes how syringomyelia has affected her family and provides information and support for dog owners, breeders and veterinarians. This book has been an important milestone in fundraising. Over $20,000 has been raised so far for the gene research now under way which benefits not only all canine breeds suffering from this disease, but human friends as well. More details: www.fortheloveofollie.com
Soundtracks • Chiari Conference 2008 Chiari Malformation: State of the Research & New Directions www.conquerchiari.org/ResearchConf.htm A video web archive of the presentations is available for viewing. Genetics: Dogs & Humans Chiari Chicago Nov 2008Dr. Guy Rouleau, McGill University. Part of a two day professional research conference was held in order to establish the current state of knowledge regarding Chiari malformation, discuss recent developments in Chiari research, and develop research recommendations to advance the state of knowledge and care for Chiari malformation. It was sponsored by the National Institute of Neurological Disorders and Stroke (NINDS), the Office of Rare Diseases, the University of Illinois-Chicago, the University of Akron, Conquer Chiari, Column of Hope, and the American Syringomyelia Alliance Project.
• Syringomyelia 2007 International Symposium (www.syringomyelia2007.org) CDs of SM talks: Buy CDs of all five talks and the hour-long Q&A session given by international experts on SM in cavaliers from the October 2007 Rugby, UK International SM Symposium. These talks are aimed at a general pet owner and breeder audience; they explain CM/SM and detail the latest research, treatment, and a new two year project to produce breeding guidelines. You can buy online from Karlin Lillington’s website http://sm.cavaliertalk.com/ All proceeds go to the SM genome research project.
DVDs available from Penny Knowler (http://veterinary-neurologist.co.uk )
• Live Syringomyelia Seminar – ACKCSC Nationals May 2005 (PAWSitively Video) Seminar at the National American Cavalier King Charles Spaniel Club Specialty in Lancaster, Pennsylvania USA , including breeding guidelines
• Seminar sponsored by the Cavalier King Charles Spaniel Club of Canada ( 2 discs includes breeder questions)
• Seminar for the Cavalier Club, Wood green, Animal Shelter, Cambs, UK. Dec 2005 (Breeding guidelines and Breeders Questions)
All proceeds go to Syringomyelia Research
Support and research for human sufferers of SM and associated conditions:
UK • www.theannconroytrust.org.ukAnn Conroy Trust The Charity is the only organisation in the UK providing educational material about Syringomyelia. It funds vital research work and provides a national helpline and support network which includes qualified support counsellors for sufferers and their carers .
• NINDS Chiari Malformation Information Page National Institute of Neurological Disorders and Stroke gives details of medical information USA • www.csfinfo.orgChiari & Syringomyelia Foundation – aims to advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related CSF (cerebrospinal fluid) disorders. • www.asap.orgAmerican Syringomyelia Alliance Project sponsors an annual medical conference linking the top medical professionals in the field with those affected. ASAP reviews and funds research annually. In addition, they promote awareness by hosting community fundraisers throughout the nation. Together with its membership, ASAP works toward fulfilling its mission to improve the lives of persons affected by syringomyelia, Chiari malformation and related disorders while we find the cure. • www.conquerchiari.orgConquer Chiari and The C&S Patient Education Foundation is a non-profit organization dedicated to improving the experiences and outcomes of Chiari and syringomyelia patients through education, awareness, and research. The Foundation publishes Chiari & Syringomyelia News so that patients and their families have access to the information they need to take control of their healthcare and make informed, intelligent decisions.