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How to Join the Fight Against Canine Epilepsy
within your Breed
By Pamela Douglas, J.D.
President, Toby’s Foundation, Inc.
- Contact your breed
club to find out if a genetics committee has been established. If
there is a genetics committee within your breed club, find out what they are
doing to increase awareness about the problem of epilepsy and whom you can
contact to get involved. Many clubs do have a genetics committee, but it may
not be active or focusing on epilepsy.
- Become an active
member of your breed club. By joining your breed club you will be
able to participate in voting, receive the club magazine, and will be eligible
for special members’ discounts on ad rates should you decide to draw attention
to the problem of epilepsy through advertisements as we have done. In
addition, you have more credibility as an official member because you show
that you are invested in the breed. This is especially important if you are a
pet owner. Pet owners make up the single largest group within the breed and
breeders need them. Never let anyone dismiss your contributions or opinions if
you are a pet owner, especially if you have an affected dog. As an owner of an
epileptic dog you are the one living with the reality of the disease on a
daily basis, whereas many breeders who produce affected dogs and carriers
are not. You have more expertise from your personal experience than you may
know.
- Find out how
widespread the problem is within your breed. What percentage of
dogs within your breed are epileptic or are carriers? What research is being
done? Don’t be surprised if you discover some resistance to your questions and
inquiries. Since Idiopathic Epilepsy is genetic, some breeders may be
defensive and may not recognize that it is a problem. They may be reluctant to
support research efforts or organizations that seek to raise awareness about
canine epilepsy. If it affects their own bloodlines, they may be more likely
to deny the serious nature of the disease and may even seek to cover it up.
- Join or start a
discussion group about epilepsy in your breed. Seek out other
members of your breed club who are joining the fight against epilepsy. You
will find that there are breeders that have the courage to talk about the
problem. In our breed there was a lot of silence about epilepsy until a few
breeders who had produced it had the courage to begin talking about the
disease and formed a discussion group, EpiGENES, in August 2003 at
yahoogroups.com. EpiGENES was created to encourage dialogue about the problem
in our breed in an effort to stop epilepsy. Since a lot of our conversations
are sensitive, EpiGENES is a confidential discussion group in order to create
a safe environment for open and honest dialogue and to share information so
that breeders can make more informed breeding choices.
- Advertise and get the
word out. Coordinate information booths at health fairs, dog shows,
and other dog events. Organize fundraisers. Distribute pamphlets and other
brochures on Canine Epilepsy. You can design your own or distribute materials
produced by your club’s genetics committee. You can also design ads for your
breed club’s magazine or journal. Before I ran the first ad about Toby, no one
had ever used a “poster dog” for epilepsy in our breed. After Toby’s ad
appeared in our breed’s magazine and journal, and the disease had a name and a
face, more people started talking about the problem and facing the reality of
it.
- Start your own
non-profit organization. If this interests you, information and the
applicable forms can be obtained from your Secretary of State. Simply fill out
the forms, pay a small filing fee, and file your Articles of Organization with
the Secretary of State. You can also find forms and instructions for applying
for tax-exempt status from the IRS. Their informative publications even give
examples of the wording you need to use in your Articles of Incorporation to
have 501(c)(3) status. We started Toby’s Foundation, Inc. to aid in the fight
against canine epilepsy. Some other groups working to defeat Canine Epilepsy
are The Australian Shepherd Health and Genetics Institute,
www.ashgi.org and The Canine Epilepsy Resource Center,
www.canine-epilepsy.com.
- Support ongoing
research. The Canine Epilepsy Network (CEN) has links on its
website for research being conducted by the Universities of Missouri and
Minnesota. Visit the site at
www.canine-epilepsy.net and find out about the latest developments. The
purpose of this research is to find a gene marker so that one day a screening
test can be developed to identify carriers of the disease. You can also learn
about how to donate blood samples for this DNA research and may even want to
organize a blood drive within your breed. Some of our local chapters organized
blood drives for the research and through their efforts and others we tripled
the amount of blood donations for our breed. The CEN site also has a list of
breeds. If your breed is not involved, find out what that means. Perhaps the
problem is not widespread in your breed yet or perhaps there is a lack of
breeder or pet owner participation in gathering samples. Consider how you can
get involved to make a difference.
There
are many ways that you can join the fight against
Canine Epilepsy. How involved you become is up to you. Admittedly, I am putting
in far more time and energy than I ever imagined, but I am passionate about
stopping this horrible disease. Until there is a screening test, the sharing of
information and increasing awareness so that breeders can make better breeding
decisions is the only way we have to manage this problem. There is
still great concern about the number of carriers that are being used for
breeding unknowingly. Until a screening test is developed, breeders can only
assess the risk based on the most reliable information available to them.
We need everyone to honestly and openly share information and donate DNA; this is
critical to help save your breed.
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