Board of Directors

After an engaging and enlightening summer 2021 internship with KIF1A.ORG, Michelle joined KIF1A.ORG’s team as the Therapeutic Development Associate, where she helped the team accelerate treatment for KAND. Since then, she has become an essential team member and leader within the organization and now serves in a volunteer role as KIF1A.ORG’s Director of Strategy.

Michelle has a MA in Biotechnology from Columbia University, and an undergraduate degree 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.

Patrick Sarmiere joins the KIF1A.ORG Board of Directors with over 20 years of experience in preclinical development and translational activities for therapies addressing challenging and rare disease indications, including KAND. His expertise includes mentoring and managing research associates/scientists and planning, executing, and delivering on multidisciplinary projects with defined time and budget constraints in academic, nonprofit, and biotechnology industries. Throughout his career he has worked with a broad range of therapeutic modalities including small molecules, biologic (antibody, growth factor, enzyme), cell-based (allogenic/autologous), and genetic-based (RNAi/AAV).

We are honored to have Patrick on our board, after years of being a close research partner with KIF1A.ORG and helping advance our scientific understanding of KAND. Thank you Pat! We are excited to dive in and get to work with your guidance.

Tamara Agajanov joins our team as a Pediatrician by training with expertise in global pharmaceuticals and biotech industries with emphasis in clinical development operations in early and late-stage studies. With over 27 years of experience, Tamara Agajanov is excellent at developing strategies to accelerate clinical plans in highly complex project environments to support unmet-need populations. Her project management experience includes overseeing global in-house and outsourced multidisciplinary clinical teams through training, mentoring and transferring of responsibilities. She is experienced in every clinical development and clinical operations task from inception through completion. She is an expert at forging collaborative relationships with cross-functional teams such as pre-clinical, pharmacovigilance and regulatory; and develops a critical network of clinical sites, investigators, and key opinion leaders (KOLs).

We are thrilled to have Tamara on the team and are blessed by her ongoing support, both professional and personal, to our community. For example, when she got married she and her spouse choose to donate all their monetary gifts to KIF1A.ORG. We are privileged to have her guidance and dedication on our board.

Angie Fuller joined KIF1A.ORG in 2023. Angie’s background is in nursing, and lives in Boise Idaho with her husband and two sons. She is mother to Weston (11), who was diagnosed with KAND in 2020.

As Executive Director, Angie looks forward to supporting our growing community, working on existing initiatives, and building upon the successful networks and opportunities created since the organization was founded in 2017.

In her free time Angie enjoys outdoor adventures with her family, skiing in the winter, boating in the summer, and is currently learning to play pickleball! Most important, Angie is dedicated to every KAND family’s future and rolls up her sleeves to work hard for our relentless community.

Maria Barros is a joyful and smart Portuguese student who lives in Lisbon with her family. In 2018, Maria was diagnosed with a KIF1A genetic mutation. Fortunately, KAND has not prevented her from leading a normal life. Maria is like her peers, except for a difference in her gait, which is less coordinated and balanced due to the lower extremity ataxia and spasticity caused by KAND.

In her spare time, Maria enjoys dancing, singing, going to the beach and spending time with her friends and family. In 2023, she was able to attend the in-person KIF1A.ORG conference in New York and made a wonderful and surprising impression on everyone she met. Her quick thinking, unabashed questioning, and happy positive outlook energized those around her and made scientists and clinicians think on their feet when answering her inquiries. Maria joins the board of directors with great pride, honor, and a sense of responsibility to bring the patient voice to the table and promises to take on this challenge with the utmost commitment.

Rickard writes “I am 52 years old, live in Malmö in southern Sweden with Emma. We have a son, Emanuel, who is 2.5 years old.

I work as a police officer and am in my 19th year of service. For a few years now I have been a press officer and before that I have worked in various functions in the field. Soon I will take up a position as operational commander in the Police’s regional command centre. Before becoming a police officer, I worked as a firefighter and paramedic for many years.

I am very interested in sports and watch basically all sports, but I am most passionate about soccer and martial arts. When I do sports myself, it’s jogging, BJJ (Brazilian jiu-jitsu) and circuit strength training.

My connection to KIF1A/KAND is my daughter Eleonora, who was born with the diagnosis in 2015. Eleonora passed away on February 14, 2019, on Valentine’s Day. I have been involved in KIF1A.ORG since its inception, in 2017. I have seen a mission in spreading knowledge about KIF1A/KAND, I have helped or guided Swedish families and been at hand with experiences and knowledge for KIF1A families internationally.

It is a great honor to be elected to the board, I hope I will be an asset. Something I see as a problem and that I would like to change is that the knowledge about KIF1A/KAND differs around the world. The KIF1A/KAND patient often finds it difficult to find a doctor with knowledge of KIF1A/KAND, even more difficult to find a neurologist who is a specialist in the diagnosis. As far as I know, there is no list of doctors in different countries who are specialists in KIF1A/KAND, something that would otherwise make it easier for newly diagnosed patients in particular if they could refer their doctor to a named specialist.

I also see gaps in knowledge and routines regarding care and habilitation of KIF1A/KAND patients. This applies nationally as well as internationally. My opinion is that there is no general consensus on what constitutes the best care for KIF1A/KAND patients, something that can be due to, among other things, different countries having different requirements for evidence and, in some cases, different views on ethics.

I look forward to being part of moving KIF1A.ORG forward, advocating in and for the interest of KIF1A families and towards a cure.“

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.

Sally Jackson and Luke Rosen founded KIF1A.ORG in 2016 following their daughter Susannah’s KIF1A diagnosis. Sally has served on the board since it’s inception and has helped grow KIF1A.ORG into the robust and relentless community it is today.