An image of a smiling adult woman named Jenny Sorin, who is an associate director of Business and Program Development at the Milken Institute. She has long brunette hair, light white skin, and is wearing a black sweater with a white collar.

Jenny Sorin

Associate Director, Business and Program Development
Jenny Sorin is an associate director of Business and Program Development at the Milken Institute. Based in New York, Sorin is responsible for managing strategic partnerships and sponsors across the Institute’s flagship events.
An image of a smiling adult woman named Kim Batarse, who is a director on the Business and Program development team at the Milken Institute. The image is black and white and she has shoulder-length seemingly brunette hair, white skin, and is wearing a white collared shirt.

Kim Batarse

Director, Business and Program Development—Financial Markets Track
Kim Batarse is a director on the Business and Drogram development team at the Milken Institute. Batarse leads the curation of the financial markets track in programs across Milken Institute’s convening internationally, including its flagship Global Conference.
An image of a smiling adult woman named Elana Jacob, who is an associate director on the Business and Program Development team at the Milken Institute. She has shoulder-length brunette hair, light white skin, and is wearing a black shirt against a gray background.

Elana Jacob

Associate Director, Business and Program Development
Elana Jacob is an associate director on the Business and Program Development team at the Milken Institute in the New York office. Since joining the Institute in 2021, Jacob has developed and managed a global portfolio of strategic partners and sponsors for all major Milken Institute convenings, with an emphasis on the Global Conference.
A headshot of an older adult man with short gray hair and white skin. He is wearing circular glasses, a gray suit, and a red tie.

John Halamka

John D. Halamka, MD, is president of the Mayo Clinic Platform, a digital initiative that transforms health care by bringing together solution developers, data partners, and health-care service providers.
An image of a bald adult man with a stubbly beard and brown skin. He is wearing round glasses and a gray sweater and smiling at the camera.

John Wigneswaran

John Wigneswaran, MD, (Wig) is Optum Rx's chief clinical officer, overseeing pharmacy benefit clinical operations for its commercial, health plan, government, and union clients, clinical product development, drug trends, and specialty medication strategy. He currently serves on the National Kidney Foundation's board of directors.

CAMK2-Related Neurodevelopmental Disorders

Body

CAMK2-related neurodevelopmental disorders are a newly recognized family of conditions associated with mutations in the CAMK2 genes. These genes encode calcium/calmodulin-dependent protein kinase II (CAMK2), which plays a key role in mediating calcium signaling in the brain. Mutations in the CAMK2 genes can disrupt synaptic plasticity, learning, and memory, leading to developmental and motor delays, seizures, behavioral abnormalities, and neuropsychiatric effects. The symptoms and severity of CAMK2 disorders can vary widely, depending on which CAMK2 gene is mutated and the specific type of mutation.

While approximately 300 individuals have been diagnosed with a CAMK2-related neurodevelopmental disorder to date, scientists and clinicians expect that many more people with neurodevelopmental disorders will discover that their condition is CAMK2-related, thanks to newly available genetic tests that comprehensively identify gene mutations. Currently, there are no Food and Drug Administration-approved therapies for these disorders; treatment approaches focus on symptom management, which fails to address the disease’s root cause. As more individuals with CAMK2 mutations are identified over time, and as awareness of CAMK2-related neurodevelopmental disorders spreads, a better understanding of all possible symptoms and how specific mutations lead to various symptoms and severity is expected to emerge. This knowledge will drive a much-needed effort to understand the biology of these disorders and how to treat them effectively.

Science Philanthropy Accelerator for Research and Collaboration (SPARC) will conduct a comprehensive research and clinical practice review exploring the symptoms, biology, and clinical care of CAMK2 disorders. The landscaping effort will result in a public report that distributes knowledge about these complex and rare disorders and identifies targeted opportunities for philanthropy to make an outsized impact on improving the lives of patients and their families.

957
Subscribe to