Approved Minutes of January 21, 2026

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MINUTES ORANGE COUNTY BOARD OF HEALTH January 21, 2026 Connections to Community Support Committee Dr. Jonnal provided the update for the Connections to Community Support committee. Dr. Jonnal shared that the committee discussed other ways to address affordable housing after passing their resolution on affordable housing, particularly by collaborating with local elected officials and planning boards to help support the realization of recommendations from the resolution. Some additional ideas that were discussed include possibly exploring some grant writing in partnership with the Housing Department and engaging in community education at future Hillsborough Last Friday Events. The committee will next meet in early March. Ad Hoc Committee on Well Rules The committee will reconvene in late January to discuss next steps regarding the well rules. VII. Educational Sessions A. Youth for Rare Diseases and Newborn Screening for Metachromatic Leukodystrophy Vrinda, founder of the nonprofit Youth for Rare Diseases, presented on the importance of adding Metachromatic Leukodystrophy (MLD) and Duchenne Muscular Dystrophy (DMD) to the NC Newborn Screening Panel Program. Some highlights of her presentation are below: • Despite advances in scientific knowledge, young people are still suffering from complications related to rare diseases due to systemic issues; Youth for Rare Diseases is a youth-led nonprofit effort seeking to advocate for change. • Metachromatic Leukodystrophy (MILD) is a rare inherited disorder that attacks the nervous system — despite effective preventative gene therapy treatments being available, undiagnosed infants still hit their regular developmental milestones but are accumulating nervous system damage over time. By the time symptoms appear and they are diagnosed, the damage is permanent and cannot be reversed. • Duchenne Muscular Dystrophy (DMD) is a similar degenerative disease that affects muscle function. Though preventative therapies are available, and symptoms begin to appear around the age of two, due to the rareness of the condition it is typically not diagnosed until around four or five, meaning a lot of damage occurs before the disease is identified, and the damage cannot be reversed. • Though there are effective, validated screening tests and therapies available for both MLD and DMD, these diseases are so rare that most doctors have never seen a case before and are not familiar with the symptoms, which also overlap with a lot of other possible conditions. This lack of familiarity increases the typical length of time between the onset of damage and the time of clinical diagnosis, allowing more harm to occur. • In late 2025, the Federal Recommended Universal Screening Panel (RUSP) added MLD and DMD to their newborn screening panel, giving NC up to three years to add both conditions to the NC Newborn Screening Panel Program. However, there have been past cases when NC experienced substantial delays between the mandate to add a condition to the screening panel and when the condition was finally added, such as with Pompe, where there was an eight-year delay. There is a substantial disconnect between clinical research achievements and public health policy implementation. • Everything needed to improve outcomes for newborns with MLD or DMD already exists, including validated screening tests, FDA-approved therapies, and clinical studies proving S:\Managers Working Files\BOH\Agendas &Abstracts\2026 Agenda and Abstracts\ January Page 3