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KDF News
The heartbeat of the Kawasaki Disease Foundation
Winter 2014
Volume 2, Issue 2

KDF News

The heartbeat of the Kawasaki Disease Foundation

Winter 2014
Volume 2, Issue 2


 

Table of Contents:

 

A Letter From The President

 
Winter 2014
Dear KD Friends and Families,

Throughout 2013, countless families from across the country held fund raisers and donated to KD research to support the development of a diagnostic test.  As a result of the generosity of our donors, we made a $100,000 grant to the Kawasaki Disease Research Center (“KDRC”) at the University of California San Diego to grow and support a Kawasaki Disease biorepository.  The valuable samples stored in the KD Biorepository have provided the necessary patient samples to support a variety of research projects. Most recently, the biorepository and its linked database were used by collaborators at Stanford University to devise a diagnostic algorithm and specific biomarker test that will be formally tested in the Emergency Dept. at Rady Children’s Hospital, San Diego.  As another example of the importance of the biorepository as a resource for KD research, the understanding of the genetic basis of susceptibility to KD and aneurysm formation has relied heavily on DNA and RNA samples collected, curated, and stored at the KDRC at UCSD.
 
This grant is the first of many steps in helping to advance critical KD research.  We hope in the coming years to increasing funding that will help develop a diagnostic test.  Also, knowing that there are many other areas of concern that require research for children already affected by KD, we hope to provide additional KD grants in the future.  We greatly appreciate your support.
 
Thanks,
Greg Chin
KDF Founder & President
 
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Kawasaki Disease Foundation
"To Save a Child's Heart" Gala

 
The 5th Annual To Save A Child's Heart - Celebrity Chefs Cooking for KD gala was a great success. Guests enjoyed a 5 course dinner with one of the 22 highly acclaimed celebrity chefs participating from all around the country.

 

The evening began at 5:00pm with the VIP cocktail reception with celebrity and KD parents, Gary Busey and Sarah Chalke along with Chefs Nate Appleman, Amanda Freitag and Gerard Craft.

The cocktail reception and silent auction was a big hit with many fantastic items for guests to bid on including a signed guitar and case by Slash, a New York trip, Nascar tickets with pit row passes and field passes to a San Francisco 49er game just to name a few.

Dinner followed, hosted by your own celebrity chef. Speaker, Dr. Gaby Haddad from Rady Children's Hospital San Diego welcomed everyone, followed by stories from Gary Busey and Sarah Chalke. Our guest speaker, Gina O'Neill, told her heartwarming story of her son, Carson, one of the many reasons why we were there on November, 9, to raise funds for a diagnostic test.

I am happy to announce that after an exciting live auction and fund a need, the foundation along with the funds from the recent online Crowdrise fundraiser will be close to being able to fund a diagnostic test for Kawasaki Disease. This is a very exciting moment and with the support of a few more donations, we, together as a KD community will be saving so many precious children's hearts.

Please join us next year on November 8, 2014 for the 6th Annual Celebrity Chefs Cooking for KD gala.

Best,
Jenn Phillips
Gala Chair 2013
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Kawasaki Disease Foundation
"To Save a Child's Heart" Gala Photo Gallery

 

Gala Honorary Chef and KD Parent, Nate Appleman and Gala Chair, KDF Board Member and KD Parent, Jenn Phillips
(Light Wrangler Photos by Kristin McGuire)

Gina O'Neill and Family
(Light Wrangler Photos by Kristin McGuire)

KD Parent and Actor Gary Busey and Wife, Steffanie Busey
(Light Wrangler Photos by Kristin McGuire)

Don, Brooke and Patty Dawn
(Light Wrangler Photos by Kristin McGuire)
KDF Board Members, Catherine Frank, Lynda Moore and Kate Davila
(Light Wrangler Photos by Kristin McGuire)
Gala Chair, KDF Board Member and KD Parent, Jenn Phillips and Son
(Light Wrangler Photos by Kristin McGuire)

Gala Honorary Chef and KD Parent, Nate Appleman and Family

(Light Wrangler Photos by Kristin McGuire)
Gala Celebrity Chefs
(Light Wrangler Photos by Kristin McGuire)
(Light Wrangler Photos by Kristin McGuire)
(Light Wrangler Photos by Kristin McGuire)

Gala Celebrity Chefs
(Light Wrangler Photos by Kristin McGuire)
Gala Celebrity Chefs
(Light Wrangler Photos by Kristin McGuire)
Gala Celebrity Chefs
(Light Wrangler Photos by Kristin McGuire)
Gala Celebrity Chefs
(Light Wrangler Photos by Kristin McGuire)
UCSD Kawasaki Disease Head Researcher, Dr. Jane Burns M.D. and Gala Chair, Jenn Phillips

(Light Wrangler Photos by Kristin McGuire)
 
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2013 Kawasaki Disease Parent Symposium at UCSD


Did you miss the 2013 Annual KD Parent Symposium at UCSD? Well, you can now watch symposium videos via our KD Foundation You Tube channel (links below) so please watch to learn about the latest KD updates and research going on in Dr. Burns' Kawasaki Disease Lab at UCSD
 

Dr. Adriana Tremoulet gives a speech on the treatment of kids with KD now and possibly in the future. To watch please click here:
 

Dr. Tremoulet Speech #1

 

Dr. Adriana Tremoulet gives her speech on Diagnosing KD at the KD symposium in 2013 at University of California San Diego. To watch please click here:

Dr. Tremoulet Speech #2


KD patient and foundation board member Kate Davila gives a speech on her life with KD and how it has affected her. To watch please click here:

Kate Davila Speech

 

Dr. Jane Burns and Dr. Adriana Tremoulet answer questions from the audience at the end of the Symposium in San Diego. To watch please click here:

Q & A Session


Dr. Burns is Director of the Kawasaki Disease Research Center at UCSD/Rady Children’s Hospital where she leads a multidisciplinary team that cares for 90-100 new Kawasaki Disease patients each year and follows over 1,300 families in the KD Clinic.

Dr. Tremoulet helps care for the over 90 children that are newly diagnosed with KD annually at RCHSD. Her research focuses on finding targeted treatments for children with KD and developing a diagnostic test for KD to reduce the number of children in whom the diagnosis is missed. She joined the UCSD/RCHSD Kawasaki Disease Research Center in 2006.


To learn about KD research and studies please visit the Kawasaki Disease Research Center by clicking here.

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Kawasaki Disease and Pregnant Women 

News Release Published on March 06, 2014 UC San Diego Health System 


UC San Diego researchers say risks are manageable, provided doctors recognize them 

 

In the first study of its type, researchers at the University of California, San Diego School of Medicine have looked at the health threat to pregnant women with a history of Kawasaki disease (KD), concluding that the risks are low with informed management and care.

The findings are published in the March 6, 2014 online edition of the British Journal of Obstetrics and Gynaecology.

KD is a childhood condition affecting the coronary arteries. It is the most common cause of acquired heart disease in children. First recognized in Japan following World War II, KD diagnoses are rising among children in Asia, the United States and Western Europe. Predictive models estimate that by 2020 one in every 1,600 American adults will be affected by KD.

“A growing number of women with a history of KD are reaching child-bearing age, but there is little information available to guide their obstetrical care,” said study author Jane C. Burns, MD, professor and director of the Kawasaki Disease Research Center at UC San Diego and Rady Children’s Hospital-San Diego. “By and large, KD is virtually unknown among working obstetricians.”

KD is currently diagnosed by a constellation of clinical signs, with supporting lab tests that indicate high levels of inflammation. These signs include abrupt onset of high fever, accompanied by four of five criteria, among them: widespread rash, cracked and fissured lips, “strawberry tongue,” bloodshot eyes, lymph node enlargement and red, swollen hands and feet.

Without treatment, 25 percent of children with KD develop coronary artery aneurysms – balloon-like bulges of heart vessels – that may eventually result in heart attacks, congestive heart failure or sudden death. The condition can be treated with a high-dose of intravenous immunoglobulin and aspirin, reducing the risk of aneurysms to 5 percent. The long-term risk for adults with a history of KD in childhood is not known.

Senior study author John Gordon, MD, and colleagues conducted the first KD study of non-Japanese patients, and the first to explore the health risks to women with a history of KD and their offspring. They found that the health risks for mothers with no KD-related coronary artery damage were similar to the general population. For women with aneurysms, the risks were low with appropriate management and care.

“The main message is positive,” said Burns. “Women who have had KD can successfully deliver to term without complications. C-sections are not necessarily indicated if they have aneurysms, they can labor normally, if their overall cardiovascular status is OK.”

There is a genetic component to KD. The study found that two of the 21 children born to the 10 women with a history of KD also developed the disease. “There is clearly an increased risk in offspring,” said Burns, “but the (study) numbers are small so we cannot really calculate a risk until there is a larger population of KD adults who have had children.”

Co-authors include C.T. Gordon, S. Jimenez-Fernandez and C. Shimizu, Department of Pediatrics, UCSD; L.B. Daniels and A.M. Kahn, Department of Medicine, UCSD; M. Tarsa, Department of Maternal and Fetal Medicine, UCSD; T. Matsubara, Juntendo University Urayasu Hospital; and John B. Gordon, San Diego Cardiac Center.

Funding for this research came, in part, from grants from the National Heart, Lung, Blood Institute of the National Institutes of Health (grant HL U54 HL108460), the American Heart Association and the Gordon and Marilyn Macklin Foundation.

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Heart Healthy Recipes


Life is busy! Between kids, work, friends and all that life has to offer, sometimes having a healthy meal is impossible! With kids who have had Kawasaki Disease, eating “heart healthy” is important, even if they didn’t sustain heart damage. We’d like to feature a heart healthy recipe that you (and your kids!) could try out. If you have a recipe you’d like to see featured, please send it to the editor.



Almond-Crusted Chicken Fingers

Originally featured on the American Heart Association website

Serves: 4
Prep Time: 20 minutes
Baking  Time: 20 minutes


 
Instead of batter-dipped, deep-fried nuggets, we coat chicken tenders in a seasoned almond and whole-wheat flour crust and then oven-fry them to perfection. With half the fat of standard breaded chicken tenders, you can enjoy to your (healthy) heart’s content.
 
  • Canola oil cooking spray
  • 1/2 cup sliced almonds
  • 1/4 cup whole-wheat flour
  • 1 1/2 teaspoons paprika
  • 1/2 teaspoon garlic powder
  • 1/2 teaspoon dry mustard
  • 1/4 teaspoon salt
  • 1/8 teaspoon freshly ground pepper
  • 1 1/2 teaspoons extra-virgin olive oil
  • 4 large egg whites
  • 1 pound chicken tenders (see Cook's Tip)
Preheat oven to 475°F. Line a baking sheet with foil. Set a wire rack on the baking sheet and coat it with cooking spray.

Place almonds, flour, paprika, garlic powder, dry mustard, salt and pepper in a food processor; process until the almonds are finely chopped and the paprika is mixed throughout, about 1 minute. With the motor running, drizzle in oil; process until combined. Transfer the mixture to a shallow dish.

Whisk egg whites in a second shallow dish. Add chicken tenders and turn to coat. Transfer each tender to the almond mixture; turn to coat evenly. (Discard any remaining egg white and almond mixture.) Place the tenders on the prepared rack and coat with cooking spray; turn and spray the other side.

Bake the chicken fingers until golden brown, crispy and no longer pink in the center, 20 to 25 minutes.

Ingredient note: Chicken tenders, virtually fat-free, are a strip of rib meat typically found attached to the underside of the chicken breast, but they can also be purchased separately. Four 1-ounce tenders will yield a 3-ounce cooked portion. Tenders are perfect for quick stir-fries, chicken satay or kid-friendly breaded “chicken fingers.”
 
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Online Fundraisers Benefiting KD Research

Who: Tupperware

Host: KD mom, Jennifer Fink

How: Shop online via link below and 40% of all sales will benefit the Kawasaki Disease Foundation

Where: Tupperware - Kawasaki Disease Foundation's Online Fundraiser

 
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4th National Kawasaki Disease Awareness Day

January 26, 2014

The 4th National Kawasaki Disease Awareness Day was a HUGE success this year as many of our KD families and friends helped spread awareness nationwide throughout the whole month of January.

Since 2011, when the Kawasaki Disease Foundation declared January 26 the first National Kawasaki Disease Awareness Day in the United States, many of you have helped us raise awareness each year by telling someone about Kawasaki disease, distributing our KD symptom posters and donating $26 on the 26th to the KD Foundation for KD research.

Today and every day we are truly grateful for all the support we have received throughout the years, and we ask that you please continue to raise KD awareness year round. If you need help getting started please contact us at any time, as we would be happy to help you organize an awareness or fundraising event. Or if you would like a little more inspiration/ideas please scroll down to see what others did this past January 26 to raise KD awareness and funds for KD research via the KD Foundation.


Our KD Families and Friends in Action -


KD kid, Addison, collected toys and books for the kids at her Children's Hospital, and she delivered them on KD awareness day! She was diagnosed with KD about 2 months ago and she's doing great today.

Addison, many thanks from all of us at the KDF!





Nikki Lunsford and her family helped declare January 26 National Kawasaki Disease Awareness Day in Washington, Indiana.

Pictured here is Mayor Joseph Wellman and Nikki Lunsford's KD kid.

Thank you Lunsford Family for making this possible. -The KDF






Jennifer McQueen Aguirre and her son Mac, who was diagnosed with Kawasaki disease last March 2013, spoke on their local news Channel 4 about Kawasaki disease and about the importance of raising KD awareness.

Thank you Jennifer and Mac!




Sandra Sato's son, Evan, (age 11) helped spread awareness in Hawaii. He got a proclamation from their local mayor signed recognizing Jan 26, 2014 as Kawasaki Disease Awareness Day for Hawaii County, he passed out flyers and button magnets to everyone in his school; and he spoke on the radio about Kawasaki disease.

Evan's little sister Maya was diagnosed in October 2012 when she was 3 months old. Her twin brother, Will, was unaffected.


Thank you Sato family for all you do!





KD kid, Drayden, wore his KD awareness shirt to school on January 26 and he passed out heart lollipops to his classmates.

Thank you Drayden for helping spread KD awareness!




 
 
 
We appreciate all your support and thank you from the bottom of our hearts for helping make the 4th National Kawasaki Disease Awareness Day another HUGE success.

Thank you!
Kawasaki Disease Foundation
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Request To Require Mandatory Reporting of Kawasaki Disease (KD) Cases in America

The Kawasaki Disease Foundation together with KD parents and families are asking the CDC to start tracking Kawasaki Disease in America and assist researchers by arming them with current numbers that can be used to rule out theories, increase public awareness and aid in the funding for diagnostic tests.

Although the Center for Disease Control (CDC) does not currently track the number of new cases, there is current research to suggest that Kawasaki Disease may be on the rise. If the numbers are indeed rising in the US, action must be taken to protect our children. Knowledge is power and, in this case, it may save the life of a child. We believe obtaining accurate numbers of diagnosed cases of KD cases within the US will be of help, to both the community and researchers, in finding a cure, funding a diagnostic test, and raising community awareness of this disease. 

Due to  the dire effects on the children who get Kawasaki Disease we are requesting that the CDC re-evaluate their stance on Kawasaki Disease and require mandatory reporting of this disease by medical staff upon diagnosis so that accurate numbers can be given to researchers and the community.

Because we believe this data collection will help save precious lives we have joined forces with members and families of the Kawasaki Disease Foundation by asking you to sign our petition. The petition is a small start that will hopefully make the Center for Disease Control (CDC) make reporting of Kawasaki disease cases mandatory in the United States. Please help us reach our goal by signing the petition via change.org, and don't forget to invite your friends and family to do the same as every signature counts. 


 
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Kawasaki Disease Research Center Updates
Click Here to Visit the KD Research Center

Dr. Adriana Tremoulet traveled to conferences in Latin America over that last several months to meet with pediatric infectious specialists interested in KD. Efforts are underway to track cases and do educational outreach in Latin American countries to improve the recognition and treatment of KD cases.


Dr. Jane Burns participated in the annual meeting of the British Cardiovascular Society where she gave a presentation of KD joined by her husband, Dr. John Gordon. Dr. Gordon is President-elect of the American College of Cardiology for Southern California and is an authority of the care of adults who have suffered from KD in childhood. The couple also participated in an all-day symposium hosted by Dr. Michael Levin at St. Mary’s Hospital in London. The symposium was attended by physicians who care for KD children from all the Greater London teaching hospitals and was a great opportunity to share information about new developments in caring for KD children.
 
New studies launched at Rady Children’s Hospital and the KD Research Center, UCSD:
  • Testing the Test: September 1, 2013 will see the launch of a study to test the performance of a new diagnostic test for KD. Dr. Tremoulet and Dr. Kanegaye of the RCHSD Emergency Dept. will be the lead investigators in collaboration with Dr. Bruce Ling and his team at Stanford University who devised the new test. The study is being funded with the generous support of the Gordon and Marilyn Macklin Foundation (Don Dawn, trustee) and the Sarah Chalke KD Challenge at crowdrise.com. If you haven’t already donated, please visit the Kawasaki Disease Foundation website to make a donation by clicking here.
  • Re-purposing a well-known drug for our KD children with arterial damage: Dr. Tremoulet is the lead investigator for a two-center study of atorvastatin, a statin drug often used to lower cholesterol, to prevent further damage in children with acute KD and early signs of damage to the blood vessel wall. The study is open to children over the age of 2 yrs. Investigators at the University of Colorado will be collaborating and enrolling patients in Denver, Colorado. A large grant to fund the continuation of the study will be submitted this fall. Fingers crossed!!!
  • Understanding how IVIG works: Two important discoveries have been made this year that explain how IVIG works in our KD children and why some children are resistant.
  • Dr. Alessandra Franco, a cellular immunologist at UCSD, has discovered a new function of the immune system and how it downregulates inflammation. This discovery will have an impact way beyond just KD. It offers the promise of someday being able to replace IVIG with a more affordable treatment so that all the world’s children could have access to an effective therapy.
  • Dr. Shohei Ogata, a visiting scholar from Japan, worked with the KDRC team to discover a pattern of missing sugar molecules on the surface of proteins that is linked to resistance to IVIG. Dr. Chisato Shimizu at the KDRC will now take up the search for the genetic difference in these patients. This brings the promise of devising a test to identify resistant patients even before IVIG treatment so that additional anti-inflammatory therapies can be given.
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Kawasaki Disease Foundation
Calendar of Events

If you have an event that you would like to add to the calendar, please email it to editor@kdfoundation.org

April 11, 2014 – Easton's KD Crusade (KD Awareness Event/Blood Drive), 3pm-8pm, UFA Fire Station,
4850 W Mount Ogden Peak Drive, Herriman, Utah 84096. For more information please email Britney Walker: britneywalker4@gmail.com

September 13, 2014 – Kawasaki Disease Benefit Barrel Show, Starts at 12pm, Aberdeen Stables, 1175 Aberdeen Road, Moscow, Pennsylvania 18444. For more information please email or call: 570-253-2553 or 570-352-5506 kdbenefithorseshow@gmail.com , follow event on Facebook by clicking here or, click here to see event flyer and more info via our website

November 8, 2014 – Kawasaki Disease Parent Symposium, 9am-12pm, Telemedicine Building Auditorium at UC San Diego, 9500 Gilman Drive, La Jolla, CA

November 8, 2014 – 6th Annual “To Save A Child’s Heart” Gala (Celebrity chefs cooking for KD to benefit The KD Research Center at UC San Diego and Rady Children’s Hospital San Diego),
Hilton La Jolla Torrey Pines, La Jolla, CA

February 3-6, 2015 – 11th International Kawasaki Disease Symposium, Hilton Hawaiian Village, Honolulu Hawaii. Registration date TBD. For more information click here, to see the Program At A Glance click here.
 
 


Board Members

Greg Chin, President
Ipswich, MA

gregchin@kdfoundation.org

Merril Chin
Ipswich, MA

merril@kdfoundation.org

Kate Dávila
Bothell, WA

katedavila@kdfoundation.org

Catherine Frank
Havertown, PA

catherinefrank@kdfoundation.org

Monica Goss
Grand Haven, MI

monicagoss@kdfoundation.org

Vanessa Gutierrez
Daly City, CA

vanessa@kdfoundation.org

Jennifer Phillips
Rancho Santa Fe, CA

jenn@kdfoundation.org

Lynda Moore
Lake Ridge, VA

lyndamoore@kdfoundation.org

Comischell Rodriguez
Del Mar, CA

comischell@kdfoundation.org


Do you have suggestions for upcoming newsletter articles?
Would you like to have your or your child’s KD story include?
Please send the information via email to editor@kdfoundation.org



Join us in our race for an answer: our urgent goal is to research for answers and raise awareness of Kawasaki Disease.


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