KAWASAKI DISEASE FOUNDATION NEWS

We now have a branch operating in South Australia coordinated by Nidal Raslan. At the end of November last
year they held a very successful fundraising/awareness morning tea.
Nidal can be contacted at - nidal_raslan@hotmail.com

Members of the International Kawasaki Disease Genetics Consortium meet in Melbourne.

In November 2011, members of the International Kawasaki Disease Genetics Consortium from Australia
(David Burgner), US (Jane Burns), UK (Mike Levin), The Netherlands (Taco Kuijpers) and Singapore (Sonia
Davila) held a two day research meeting at The Murdoch Childrens Research Institute, Royal Children's
Hospital, Melbourne. Topics under discussion included ongoing research into Kawasaki disease, using further
detailed analysis of data already generated, and plans to recruit further KD families from various sites,
including Australia. The international collaboration, with researchers from many countries sharing the same
goal - to understand KD to develop better diagnostics and treatment - is key to making progress in cracking this
mysterious disease. Recent genetic results are starting to reveal more about the immune response in KD and we
hope that progress will continue.

If you are interested in being part of KD research and have a child with doctor-diagnosed KD (and have not
been part of previous KD genetic studies), please contact the KD foundation (info@kdfoundation.org.au) who
will put you in contact with the researchers.

U.S KD Foundation Celebrates 2nd KD Awareness Day

The U.S KD Foundation celebrated its second National Kawasaki Disease Awareness Day on January 26th,
2012. This date was chosen because on January 26th 1961, Dr Kawasaki of Japan had his ‘aha’ moment when
he saw his second patient with the tell-tale signs of what would later be named Kawasaki Disease.
(this date has different significance here in Australia!)

10th International Kawasaki Disease Symposium held in Osaka, Japan on February 7th.

Three parents from the U.S KD Foundation attended this conference. Dr. Tomisaku Kawasaki celebrated his
87th Birthday. The following is a short summary from a Parent’s Perspective written by Vanessa Gutierrez. Dr
Burgner was among the doctors from Australia who attended.

Epidemiology of Kawasaki Disease−Worldwide Numbers

By Vanessa Gutierrez

On February 7, 2012, 428 attendees joined in at the 10th International Kawasaki Disease Symposium in Kyoto,
Japan. Amongst them were Dr. Tomisaku Kawasaki, Dr. Jane Burns, Dr. Anne Rowley, Dr. Jane Newburger,
Dr. Shulman Stanford and many, many more. In the same way, doctors from Australia, Costa Rica, India,
Canada, Finland, Italy, Russia, Korea and many other countries all met in Kyoto for four days for one sole
purpose−to contribute to Kawasaki disease research.

Upon celebrating the 87th birthday of Professor Tomisaku Kawasaki, the present KD experts gathered in one
room where they engaged in numerous discussions about the different reports presented from doctors
worldwide. To put it differently, the energy, dedication and commitment to KD by the many professionals was
so clearly felt in the warm atmosphere, regardless of the cold, somewhat snowy weather in Kyoto. Point in fact
the missing puzzle piece to KD is eagerly being sought after! With this in mind, here is a ‘snapshot’ of some of
the topics that were discussed at the symposium.

To begin, the epidemiology of Kawasaki disease varies greatly from country to country. Japan, for instance, has
an incidence rate of 240/100,000 children under the age of five; however, no reports are being made in
countries such as North Korea, Africa and Latin America. This lack of response rates, clearly, makes it difficult
to track KD cases in these countries, which makes researchers job even harder, so many efforts are being made
to assure that KD cases are reported worldwide. Currently, the only Latin American country reporting KD cases
is Costa Rica with 261 cases from January 1993 to December 2011, out of which 74% were initially
misdiagnosed.

In the same way, even some countries that do report KD cases still have a difficult time tracking accurate
numbers and are resorted to estimate epidemiology. Indonesia, for example, reported based on 550 estimated
cases of KD for Chinese children in this country every year, and 4,840 cases for Native descent children.
However, the number remains a question mark because there is no registry in place in this country.

Tracking in Ontario, The Netherlands, Northern European Countries, Italy, W. Australia, Seoul Korea, Taiwan,
Hong Kong and Singapore, on the other hand, has had a better success rate. Surveillance in Ontario, for
instance, has been tracked through direct contact with all hospitals and pediatric cardiologist with 100%
response rate. Similarly, The Netherlands and Northern European Countries, such as Finland, Sweden and
Norway, track KD cases through coded hospital visits and discharges or mandatory monthly notification by
pediatricians. Together with Australia reporting a case of KD every other day, and other similar tracking
systems in the above Asian countries, rising or plateau incidents of Kawasaki disease can be better noted and
studied. A tracking system, evidently, is essential for researchers worldwide for better understanding of who is
being diagnosed with KD and when.

Furthermore, while the United States is currently reporting 2% mortality rate, other countries such as Malaysia
and Costa Rica reported no documented KD related deaths. Surprisingly, Costa Rica has only one pediatric
referral clinic, and, still, no mortality rates have been reported. Moreover, the Philippines reported a mortality
rate of less than 1% at 2/1,526.
Moving on, a 2009 KD surveillance database compiled by Healthcare Cost and Utilization Project in the United
States revealed that there is no evidence for increasing incidents of KD in the U.S., and that the number of
patients with coronary aneurysms has remained stable at about 5% during a ten year surveillance period (2000-
2009). Additionally, it was observed that even though in the United States KD peaks in winter and spring,
seasonality varies from country to country. To explain, some countries have winter and summer peaks while
others have spring and fall peaks.

As we can see, KD occurs worldwide with a tremendous difference in the numbers reported and the certainty of
cases. On the one side there is the increasing incidence of KD cases reported annually in Japan, and on the other
are the unknown numbers in Latin America where the diagnosis is rarely made. Therefore, KD experts have
continued to recommend all KD children to follow a healthy life style whether their coronary arteries were
always normal or not. To put it differently, researchers continue to encourage KD parents to focus early on
preventive care such as encouraging our KD children to avoid tobacco and substances, and controlling other
cardiac risk factors such as hyperlipidemia, hypertension, and high levels of fasting glucose, high BMI, and
engaging in physical activity, as recommended by your child’s cardiologist.

All things considered, going back to 1961 when KD was an unknown diagnosis, many breakthroughs have been
made in the 51 years that followed by researchers worldwide. Even though many questions, such as is KD
predictable, why it is more common in Asians, and what has been learned about etiology, still remain in place,
let’s not forget that researchers are continuously working together to unravel the genetics of Kawasaki disease.
And let’s hope that the many whys of KD and the cause may soon be discovered!

RADIO INTERVIEW BY Dr. Burgner

Dr. David Burnger, our medical advisor, gave a radio interview on Kawasaki Disease on Triple R in Melourne.
We have a podcast link on our website – www.kdfoundation.org.au under Recent Publicty on the Links Page.

David has very kindly written the following summary of current and future KD Research. We are sure you will
find it very informative.

Current Kawasaki disease research in Australia and beyond:

There is a lot of research into Kawasaki disease internationally, with efforts trying to find the cause, the main
immune responses that are different in KD children and looking at more specific treatments.
In Australia, recent and current KD research includes: - a study showing that KD children are more likely to be
admitted to hospital with infection or asthma/allergy, usually before the KD itself. This study suggests that the
immune system of KD patients may be intrinsically different from other children, making them more prone to
more severe illness (resulting in admission to hospital) with conditions where the immune system is likely to be
important (url:http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0028004

- the largest ever genetic study of Kawasaki disease involving researchers from 11 countries and over 2,173
individuals with Kawasaki disease and 9,383 controls, where Australian researchers played a leading role. The
study identified 2 genes where naturally occurring variation in the DNA sequence, which alters protein
function, were significantly different in KD patients. Similar results were found in both European Caucasians
and Asian KD patients. The genes are both involved in the immune response; one gene may make immune cells
produce more inflammation and the other is involved in binding immunoglobulin, which is the treatment of
KD. We are analysing the data further and expect more findings to be published
(url: http://www.ncbi.nlm.nih.gov/pubmed/22081228)

- We are undertaking the most comprehensive study of the pattern and incidence of KD ever performed in
Australia, looking at all KD cases ever reported in Western Australia.
Preliminary results suggest that KD is about 2-3 times more common than previously reported and that there is
a KD case at least every other day in Australia. We hope to publish these findings by the end of the year.

- A study in Melbourne looking at the longer term consquences of Kawasaki disease on cardiovascular health is
due to start in the next couple of months.

****We will shortly be looking for KD families to help us with ongoing genetic studies.
Involvement is simple and does NOT involve a hospital visit or a blood test!

More details will be posted on our website but in the meantime if you are interested in receiving more
information please email us at info@kdfoundation.org.au with the subject heading genetic studies.

ABC Catalyst Program on Kawasaki Disease

We have just completed filming with the ABC Catalyst Program. They are putting together a story on Kawasaki
Disease which is scheduled to air on ABC 1 on May 17th at 8pm. This is very exciting as it is the first time a
show about KD has been on Australian television. Please pass on this information to family and friends.

Sydney Information Session

Following the success of our Information Session in Melbourne in 2010, we are planning to hold a similar
session on a Saturday later in Sydney. Once a date is finalised further details will be forwarded. In the
meantime please register your interest in attending to – info@kdfoundation.org.au with the subject heading
Sydney Session.

N.S.W Fundraiser
st
On April 1 , while over 30,000 people in Melbourne took part in the annual Run for the Kids (which raises
money for the Children’s Hospital) in N.S.W Gavyn Locock and his team took part in the Hill to Habour
Challenge. They raised a large amount of money through sponsorship for the Foundation.
 Melbourne News

Here in Melbourne we are busy organising a Logies Party fundraiser. This will be held on April 15th, the night
of the Logies. One proud mum, Aylee, will be cheering extra hard for her son James who has been nominated
for Best New Talent.

Another shopping Tour is also being organised for Oct. 20th.

Kawasaki Disease Foundation Australia is a national, non-profit, parent led charity dedicated to advancing KD
issues by raising awareness, supporting families, promoting and supporting research as well as striving to
increase early diagnosis and treatment. We are run entirely by volunteers so really appreciate any assistance
you or family or friends may be able to offer in the way of goods or services that may assist with our work.

We appreciate hearing from you and feedback on your child’s progress helps us with our understanding of this
disease.