Emily is mom to JoJo, who was diagnosed with Ogden Syndrome in March 2015, at age 2.5. She is a stay-at-home mom who focuses her energy and efforts on raising her four kids and supporting patients and families affected by Ogden Syndrome. Formerly a high school English teacher, Emily is well-aware of the importance of early intervention and inclusion to the success of a child with special needs. She believes that communication, collaboration, and education are key in helping her daughter and others afflicted by rare diseases to reach their true potential.
Lacey is the mother to Savannah who was diagnosed with Ogden Syndrome in March 2015, when Savannah was 4.5 years old. Savannah inspired her mom to become a Teacher of Students with Visual Impairments (TVI), and Lacey is employed by Perkins School for the Blind in Massachusetts. She loves learning about Savannah’s specific visual impairment (cortical/cerebral visual impairment) to best support her daughter and those individuals impacted with CVI. While Lacey is not working, she spends tireless hours supporting her daughter’s unique needs and advocating for Savannah to reach her highest potential.
Matt is dad to Emma, who was diagnosed with Ogden Syndrome in 2015 at the age of 6. Matt is a commercial banker in Richmond, VA, and has been in the financial services industry for 20 years. While not working, Matt enjoys spending time with his wife Ashley, and daughters Lily and Emma down at Lake Gaston, NC. Matt and Ashley’s goal is to help raise awareness and resources for families impacted by Ogden Syndrome and other rare diseases.
Ilse is a strategy consultant at Faegre Drinker Biddle & Reath who manages initiatives to address scientific, clinical and public health challenges. With more than a decade of experience working with life sciences, health care and tax-exempt organization clients, Ilse provides strategic, project management and impact evaluation services to advance her clients’ goals. She specializes in forming and managing multi-sector collaborations that involve private, non-profit, and public sector organizations. Additionally, she assists clients with initiatives related to clinical research and data privacy compliance. Ilse joined the Foundation’s Board in January 2020 out of a desire to spend more time giving back and creating healthy futures for kids and families.
Alex is a Partner at Goodwin Procter LLP. He counsels clients in the pharmaceutical and medical device industries on a wide range of pre- and post-market issues, including pre-approval strategy, patents and exclusivity, marketing and promotion, enforcement, and corporate transactions. Alex assists extensively with matters related to orphan drug development and Hatch-Waxman exclusivity. Prior to law school, he was a medical device engineer and operations manager. Alex joined the Board in January 2020 because of his passion for helping patients with rare diseases and expertise in orphan drug development.
Ann Marie is a multi-disciplinary research scientist and project manager experienced in collaboration management, stakeholder relations and supporting multi-sector projects in the life sciences. At AstraZeneca, she is currently supporting translational science studies on several active late stage clinical development programs. Ann Marie chose to join the Board in January 2020 because she is passionate about collaboration in research and believes that it is only when you bring patients, families, and researchers together that full potential of research to meaningfully impact the lives of patients can be realized.
Allison is a pediatrician who practices in the hospital taking care of preterm infants through young adults. Allison joined the medical and scientific advisory council in 2021 because of her passion for helping patients and families access and understand the medical system and hope that through collaborating with families, physicians, and researchers that we will be able to find innovative ways to treat patients with Ogden Syndrome.
Nikki is the mother to Millie, who was diagnosed with Ogden Syndrome in April 2020 when she was 13 months old. Millie inspired a new-found love of Science and Genetics in Nikki and a passion for advancing therapeutic interventions targeting the mechanism of disease in patients with rare syndromes. After losing her mother, who received a diagnosis of bulbar onset ALS five months after Millie's diagnosis, Nikki lives by the mantra “Incurable is unacceptable.”