The Kawasaki Disease Foundation strives to be at the forefront of Kawasaki Disease (KD) issues by collaborating with families affected by the disease and medical professionals. KDF’s mission is based on three principles:
(1) raising KD awareness among the medical community, child-care providers, and the general public is critical to early diagnosis and treatment;
(2) facilitating support among families affected by the disease is essential to help families cope with a KD diagnosis that can have potentially devastating effects of heart damage, and;
(3) increasing funding for research is necessary to advance diagnostic guidelines, enhance existing treatment of KD, improve short-term and long-term follow-up care, and find a cause.
While we will not rest until we know the cause and the long-term outcome of all kids who have contracted KD, we take pride in our accomplishments over the past 19 years:
National Kawasaki Disease Awareness Day
- In 2011, the Kawasaki Disease Foundation presented a resolution to the 111th Congress, 2nd Session requesting the designation of January 26th as “National Kawasaki Disease Awareness Day.” The official declaration was sponsored by Senator Jim Webb of Virginia and Daniel Inouye of Hawaii. The Foundation has recognized the annual awareness day with an online campaign supported by groups, families, and individuals worldwide. In 2019, the annual “National Kawasaki Disease Awareness” campaign reached over 1 million Facebook users, as per Facebook.
- In connection with the KD Awareness Day, the Foundation published a poster depicting the tell-tale signs of the disease to be distributed to doctor’s offices, hospitals and clinics across the country. The poster is distributed on National Kawasaki Awareness Day by KD parents at Awareness events across the nation. The poster is available (in English and Spanish) for shipment year-round upon request. Since 2011, we have distributed over 45,000 posters (at no cost) across the United States.
Annual KD Parent Symposium
- Since it’s inception, the Foundation has kept true to its mission to facilitate support among families and individuals affected by Kawasaki disease. To accomplish this goal, the Foundation has sponsored an annual educational parent symposium event each year. The Foundation’s first parent symposium was held in Boston, Massachusetts and has been held across the country over the past twenty years, including San Jose, California and San Diego, California.
- Since 2014, the Foundation has provided live and on-demand recordings of the annual KD parent symposium held at the University of California San Diego. The recordings are provided via YouTube Live or Facebook Live and are added to our YouTube channel for on-demand watching. Using technology to achieve our goal to increase educational outreach to parents worldwide has increased our impact. Our on-demand recordings have over 40,000 views, and over 1,500 viewers have watched the live events each year.
Kawasaki Disease Foundation Bridges Program
- The Kawasaki Disease Foundation Bridges program evolved as a method of accomplishing one of the Foundation’s primary goals: providing support to families dealing with the diagnosis of Kawasaki disease. The program matches families currently facing KD with trained Support Volunteers. The volunteers are generally parents of children who have KD, or adult patients who have recovered from KD. The volunteers are screened and trained by experienced support professionals. The role of the support volunteer is to provide personal insight that may help cope with KD. Since its inception, the KDF Bridges program has linked over 1,200 families with a Support Volunteer.
The Tote Bag Project
- In 2019, the Foundation launched the KDF Tote Bag project to support families. The Kawasaki Disease Foundation created the bags for newly diagnosed patients and their families. The bags are intended for children hospitalized with KD and include several care items for the parent/guardian, information on KD, resources and the Foundation, and a teddy bear for the patient. 100 bags were delivered to the following hospitals:
- Rady Children’s Hospital, San Diego, California
- Lucile Packard Children’s Hospital Stanford, Palo Alto, California
- Brandon Regional Hospital, Brandon, Florida
- St. Joseph’s Children’s Hospital, Tampa, Florida
- Boston Children’s Hospital, Boston, Massachusetts
- Bryn Mawr Hospital, Bryn Mawr, Pennsylvania
- Seattle Children’s Hospital, Seattle, Washington
Kawasaki Disease Foundation Funded Research
- Since 2000, the Foundation has provided several grants to accelerate the pace of Kawasaki disease research. Most significantly, the Foundation made a grant to the Kawasaki Disease Research Center (KDRC) at the University of California San Diego to grow and support a Kawasaki Disease biorepository. Today, the UCSD biorepository is the largest DNA bank of KD samples in North America. 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 University of California San Diego.
Recently, the Foundation approved a grant to support Seattle Children’s Hospital Foundation – KD Kids Guild for its Genetic Prediction for Treatment Resistance in Kawasaki disease project. The study could improve the quality of life for children with Kawasaki disease at risk of developing coronary artery aneurysms. The researchers aim to identify genetic biomarkers that will predict which patients will not respond to the standard treatment and thus have a higher risk of developing coronary artery problems.
Kawasaki Disease Patient Advisory Boards
- Foundation board members keep abreast of significant developments in research studies being performed on our patient population and have attended all of the major international KD symposia that are held every three years in either Japan, Taiwan or the United States. A representative from the KDF is often invited to attend specific KD research meetings that are held nationally and internationally (e.g. India).
- KDF board members participate in pSCANNER’s Stakeholder Advisory Board (SAB) for Kawasaki disease research to provide input and guidance for active, meaningful and consequential participation of stakeholders, including patients, patient advocates, clinicians, researchers, and health system administrators, in pSCANNER activities. During the research prioritization panel (Phase I), three KDF board members participated in the Patient Advisory Board that helped identify one or more KD research studies that address a priority topic for patients. As a result, a stakeholder-driven comparative effectiveness study of treatments to prevent coronary artery damage in patients with resistant Kawasaki disease (KIDCARE) was developed. Currently, three Foundation board members actively participate in the pSCANNER Kawasaki Disease Research Co-Design Team.
Although we’re a small all-volunteer organization comprised of KD parents and survivors, we have big ideas. However, we can only carry on our mission with your continued support and patience.