Drive research efforts that show promise to treat, prevent, or cure Kabuki Syndrome
A major thrust of our efforts is fundraising, which in turn allows us to award grants for research projects that we, along with our Medical & Scientific Advisory Board, feel are most promising. Coinciding with this goal is our intention to foster communication within the medical and scientific communities, encouraging more collaboration and resources to be focused on Kabuki Syndrome. Additionally, we will share this knowledge with the patient community through research conferences, this website, and our Facebook page.
WHO WE ARE
BOARD OF DIRECTORS
MEDICAL & SCIENTIFIC ADVISORY BOARD
Dana is the proud parent of an 11-year-old daughter with Kabuki Syndrome. Since her daughter’s birth, Dana has been involved with the Kabuki Syndrome community by writing articles for the Kabuki Syndrome Network Website and serving as a “first point of contact” for families and professionals wanting to learn more about Kabuki Syndrome.
In 2015, Dana led the planning of the first research-based Kabuki Syndrome conference at Johns Hopkins Hospital in Baltimore. Then, in 2018, Dana helped establish the Kabuki Syndrome Foundation, and currently helps monitor the body of research that is ongoing across various institutions.
Amanda is the mother of two toddlers, a critical care nurse, and a freelance writer. Her daughter has Kabuki Syndrome and their rare disease journey began in 2014 with a lot of advocacy and answer-seeking in an area where Kabuki Syndrome had not been previously diagnosed. Amanda now leads the team that plans the annual Pacific Northwest Kabuki Syndrome Conference, which gathers families in the region for a weekend of socialization, helpful presentations, and research updates.
Amanda holds bachelor’s degrees in nursing and health sciences, as well as a graduate certificate in public health. Her interests in health care and communication support her motivation to educate others and advocate for this special community.