How We Began

In 2005 Joan Skluzacek organized a group of concerned parents to create an international nonprofit association called the IDEA-League. During the next 5 years this volunteer group generated tremendous public awareness, brought life-changing care to families, and helped accelerate significant medical research breakthroughs. This group quickly grew into a thriving organization and in 2011; we changed our name to reflect our renewed focus: dravet.org.

Who We Are Today

Dravet.org is a professionally-run, 501(c)3 nonprofit organization strictly adhering to the highest standards of business ethics and accounting practices. We are governed by an experienced Executive Director, a distinguished volunteer International Medical Board of Directors, a dedicated volunteer Administrative Board of Directors, hundreds of global volunteers, generous supporters, and a powerful network of resources that enables us to offer a comprehensive program of education, advocacy, support, and medical research. 

Our Mission

The mission of dravet.org is to serve as the foremost global patient advocate organization giving support to families, saving the lives of our children, promoting and funding medical research to find effective treatments and cures for Dravet syndrome and Dravet Spectrum Disorders.

We are absolutely committed in our quest to find a cure while helping to improve the quality of life for patients and their families.  Our steadfast dedication to empower families so they can take an active role in their child’s care, while managing daily challenges of these disorders, is what motivates us to do more.

Our Future

Tragically there are thousands of children suffering from misdiagnosis. Dravet.org intends to expand our services in order to help even more families. The more we grow, the more we can help.

Our Team

Leslie Rehbein Marqua

Executive Director - Combining independent consultant work with traditional professional engagements, Leslie has worked directly with a wide variety of health, human service, arts, business and industrial clients as well as various volunteer organizations for the past thirty years.

Laura Cossolotto

President - and Mother of Michaela diagnosed in 2007 after over 10 years of misdiagnosis.
Recognized as the world’s leading patient advocate for Dravet Spectrum Disorders, Laura has counseled thousands of caregivers on obtaining assistance. Laura's work has lead to coverage and reimbursement of potentially life-saving treatments for patients with many rare diseases.

Ryan Day

Vice-President - and Father of Haiden diagnosed 2010 after 1 year of seizures

Patti Thistle

Treasurer - and Mother of Mary Beth diagnosed in 2001

Tina Catterall

Co-Chair International Medical Advisory Board

Angela Black, MD

Co-Chair International Medical Advisory Board and Mother of Sarah diagnosed 2005 after 2 years of misdiagnosis

Jerry Glenn

Board Member - and Father of Amelia diagnosed 1997 after 3 years of misdiagnosis

John McMahan

Board Member - and Father of Melorah diagnosed 2006 after 6 years of misdiagnosis

Kim Skriba

Board Member - and Mother of Ryan Smith diagnosed 2007 after 8 years of misdiagnosis

Lisa Smith

Board Member - and Mother of Haley diagnosed 2007 after 7 years of misdiagnosis

Joan Skluzacek

Founder / Advisor - and Mother of Nicholas diagnosed 1999 after 7 years of misdiagnosis

Paul Lagasse

Patient Information Specialist - with an M.A. and M.L.S. degree, Mr. Lagasse brings over a decade of research and writing experience to the team. As a writer and editor, he has developed a strong knowledge base in the nonprofit and science/medical sectors.

Dravet.org gratefully acknowledges the support of our sponsors: