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

Frank’s commitment to service began in 1994 when he enlisted in the US Army. Frank served with valor as a Ranger in the 173rd Brigade Reconnaissance Company, excelling as a Team Leader. His expertise further led him to the 74th Long Range Surveillance Detachment, again as a Team Leader. He participated in numerous critical real-world missions and is recognized for bravery, leadership and strategic skills in the service of others.

In 2006, Frank transitioned his dedication to public safety, joining the Milwaukee Police Department where he served as a Police Officer on patrol and on an anti-gang unit. Frank’s law enforcement career was cut short when he was critically injured in the line of duty on Christmas Day, 2011.

Today, as the father of a nano-rare patient, Frank continues his mission to help others by volunteering for Rescue 7 Firefighters For Patients. In this role, he compassionately assists patients and their families, offering support and guidance through the challenging process of navigating medical treatments and trials.

Frank’s service – and continued commitment to help others – is a personal, life-long calling to help patients and families through hope and action.

We cannot do
this alone

We hope that you join us on this journey to discover, develop and provide individualized antisense medicines for free for life for nano-rare patients. The ultimate personalized medicine approach – for free, for life.