The KIF1A team powers our mission and vision with tremendous impact and urgency. We couldn’t accomplish anything without their energy, heart and dedication to our KIF1A community.

Meet the people behind KIF1A.ORG.

Luke Rosen

Luke Rosen, MS

Founder & Board Chairluke@kif1a.org

Luke Rosen and Sally Jackson founded KIF1A.ORG in 2016 following their daughter Susannah’s KIF1A diagnosis. In 2017 Luke left his career in film and television to accelerate discovery of treatment for Susannah and children like her.

With a focus on research strategy and outcome measures, his mission is to accelerate biotech innovation and forge efficient collaborations to rapidly discover treatment for KIF1A Associated Neurological Disorder.

Luke helps drive our mission to urgently bring treatment to children living with KIF1A Associated Neurological Disorder.

Read More

KATHRYN ATCHLEY

Presidentkathryn@kif1a.org

Kathryn Atchley got involved in the rare disease community after her son Parker was diagnosed with KIF1A Associated Neurological Disorder in 2017. Before joining KIF1A.ORG, Kathryn spent six years at the headquarters of an international not-for-profit organization, working in both development and program areas. Her experience with nonprofit management and community building efforts includes multistakeholder engagement, human-centered design principles, communications, patient advocacy, grant writing and grantmaking. Kathryn is passionate about the power of collaboration. At KIF1A.ORG, Kathryn has led the growth of the KAND community, a portfolio of funded translational research projects and collaborations with industry partners to expedite the path to KAND treatment. None of this would be possible without the relentless, unified KAND community working together to achieve KIF1A.ORG’s mission.

Read More

DOMINIQUE LESSARD, Ph.D.

Chief Science Officerdvlessard@kif1a.org

Dominique first started working with KIF1A.ORG in 2018 while researching KIF1A at University of Vermont. As an academic researcher, Dominique focused on understanding the basics of KIF1A regulation and transport at the molecular level. On top of her KIF1A research background, Dominique brings experience in science communication and engagement techniques. Specifically, her training has focused on translating and conveying complex scientific rhetoric using mixed media formats.

Dominique joined the KIF1A.ORG Leadership Team as a full-time employee in March of 2020. As Chief Science Officer, Dominique drives KIF1A.ORG’s efforts to build a global, collaborative research network, and leads our research engagement and science communication strategy. Her professional passion lies in connecting and unifying people of different backgrounds around a central goal, by acting as liaison between KIF1A.ORG and our wide range of scientific stakeholders.

Shannon Scott

SHANNON SCOTT, DNP

Chief Patient Officer​shannon@kif1a.org

Shannon has been with KIF1A.ORG since May 2017. As a practicing pediatric health care provider and mother to Sadie, who was diagnosed with KIF1A Associated Neurological Disorder, she is uniquely positioned to serve our organization. Shannon’s education and experience in the medical field has provided her with opportunities to serve as an advocate, mentor and educator.

As Chief Patient Officer, Shannon supports collaboration with researchers who are studying KAND and helps caregivers improve their knowledge of the disorder. Her ultimate goal is to strengthen engagement and understanding between KIF1A families, researchers and clinicians to improve care and treatment options for KAND patients.

Read More

JOHN SIEMER, CPA

Treasurer john@kif1a.org

John joined KIF1A.ORG in September 2018 after his daughter Lily was diagnosed with KIF1A Associated Neurological Disorder. John’s background in finance brings great value to our organization. He has a broad range of accounting and tax experience, working with organizations of various sizes and entity types, across numerous industries and the non-profit sector. His nonprofit experience includes governmental audits and Form 990 tax preparation.

In addition to serving as Treasurer, John contributes to KIF1A.ORG development and advocacy efforts, and provides guidance to families doing local fundraisers to support KIF1A.ORG.

Read More

Charlotte Klinepeter

Administrative Managercharlotte@kif1a.org

Charlotte has 10 years of non-profit and public sector experience and is mom to KIF1A superhero Anderson. Responsibilities in her previous roles include grant writing, program management, in-person and virtual event planning and other administrative duties. As Administrative Manager, Charlotte will report to the President of KIF1A.ORG to assist in day-to-day operations, ranging from fundraising and development to marketing and communications.

Read More
michelle tao headshot

Michelle Tao

Therapeutic Development Associatemichelle@kif1a.org

After an engaging and enlightening summer 2021 internship with KIF1A.ORG, Michelle has officially joined KIF1A.ORG’s team as the Therapeutic Development Associate, where she will help the team accelerate treatment for KAND. Michelle is a current student in the MA in Biotechnology program at Columbia University. She graduated from NYU Stern with a B.S. in Business (concentrations in Finance and Global Business) and a minor in Genetics. Subsequently, she worked in healthcare banking for 5 years. Michelle is passionate about breaking down human-made barriers to treatment in order to ensure equitable access to care.