Leadership

Luke is a community leader who works urgently to bring treatment and care to children living with neurological diseases and cancer. Luke is an advocate for firefighters and families affected by 9/11 related cancer, and is a cancer survivor himself. He is the founder of two nonprofits, a New York State Firefighter, and FEMA Task Force member specializing in search and rescue of high-risk, special needs victims during disaster relief operations.

In 2016 Luke Rosen and Sally Jackson founded KIF1A.ORG following their daughter’s diagnosis of KIF1A Associated Neurological Disorder (KAND), a rare neurodegenerative disease. Luke sits on the Board of Directors of KIF1A.ORG and is relentless in his advocacy for all patients and families affected by neurological conditions.

Recognizing the need for inclusive, diverse access to long-term care and clinical studies, Luke started Rescue 7 Firefighters for Patients: an endeavor to provide free housing, meals, and transportation for families traveling to receive treatment and participate in clinical studies.

Luke lives in Long Island, New York with his wife and two children.

Raena began her 23 year Law Enforcement career as a Police Officer in 2001 and currently serves as a Detective in Milwaukee, WI.

When her son was diagnosed with KIF1A Associated Neurological Disorder, Raena realized the rare disease community shares a core principle with law enforcement and first responders: for a community to succeed, leaders must galvanize around a shared mission: to help every person suffering from diseases with limited or no treatment options. Raena truly believes that by working together, the rare disease community is a force of nature willing to stop at nothing until every patient and family can live in health, happiness, and safety.

Raena quickly recognized that a child’s ability to participate in clinical studies and receive treatment should not be dependent on a family’s ability to pay for airfare, transportation housing, or meals. She is relentless in the mission and knows that only by working together we will remove financial barriers to care and access to new and emerging treatments.

Raena’s husband, a former U.S. Army Ranger and Police Officer, was critically injured in the line of duty on Christmas Day, 2011 while working on patrol. They reside in the Milwaukee, Wisconsin area with their son (9), daughter (7), and three dogs.

Effie Parks is a recognized community leader, and fierce patient advocate relentless in her fight to represent every patient, caregiver, and family suffering from genetic diseases. Effie, mother of 6-year-old Ford, created the podcast, Once Upon A Gene. Since its launch in 2019, Effie has interviewed hundreds of parents, professionals, and advocates in the rare-disease community. She has won several awards, including the WEGO Health Award for Best in Show Podcast, the Disorder Channel Award for Best Rare Podcast, and Podcast Magazine’s 2022 “40 Under 40 in Podcasting” list.

Effie works tirelessly on our shared mission to leave no patient, family, or caregiver behind. She works passionately to advocate for access to genetic testing, and to identify underlying genetic causes of conditions like Cerebral Palsy, among other community-driven scientific and medical needs. An expert at uniting every stakeholder, Effie enables collaboration between patients, caregivers, scientific and medical communities, regulators, and special educators.

Effie is an advocate for inclusive global accessibility, and lives in Mercer Island, Washington with husband Casey, Ford, and Ford’s little sister Esme.