In March, the board of NA-USA, founded in October 2021, executed its fourth grant agreement with the Ichan School of Medicine at Mt. Sinai in New York City. This time the amount was $75,000 to fund a project titled “Single-cell Dissection of Lipid Transport Pathways in VPS13A and XK Disorders.” This brings the total granted over the past five years to the Ichan School of Medicine to $325,000, quite an accomplishment for a nascent nonprofit organization. Several scholarly research articles have resulted, all published in Movement Disorders, the prestigious official Journal of the International Parkinson and Movement Disorder Society. It is important to note that the Advocacy for Neuroacanthocytosis Patients, our sister organization in the UK, is also a supporter of these grants. We are very grateful to our donors who have made this important research into both VPS13A and XK diseases possible.

At its most recent meeting, the board set aside funds to begin exploring the feasibility of funding its own XK cell line. A cell line is a population of genetically identical cells grown in a lab dish (in vitro) from a single original sample. In rare disease research, these renewable cell cultures carry a patient's specific genetic mutation, allowing scientists to study the disease mechanism, test potential drugs, and develop personalized therapies safely outside the human body.

NA-USA was recently approved by Citizen Health for inclusion in its patient registry platform. The official collaboration and onboarding should begin in the fall. You can read more about Citizen Health in Dave Asinger's article in this issue of NA News.

In late July, the board welcomed new member Erin Allino-Berndsen, caregiver to her husband Doug (photo on the right in Lausanne, September 2025), who has XK disease. This brings the total number of board members to ten, with a variety of expertise, talent and experience represented. Members hail from seven states around the continental United States, Puerto Rico, and the UK, and include a clinician, a researcher, a drug industry expert, an XK patient and an XK-carrier, family of both VPS13A and XK patients, and the founder and chair of our sister organization in the UK, all passionately united in their commitment to moving the needle towards patient advocacy, better treatments and a cure for both VPS13A and XK diseases.