35 Years of Serving the Metabolic Community

Glenn is the grandfather of Olive Haber, born with PKU in 2009. He is Treasurer and Secretary of flok, and chair of the Fundraising Committee. For over twenty years Glenn has been active in philanthropy serving in board and leadership roles for several non-profit organizations, including the NPKUA. Prior to retiring in 2008 Glenn’s working career was in finance and investment management where he was President and CEO of a Seattle mutual fund and investment adviser.

Jerry has a son (Hudson, born 2009) with PKU. He is the organizer of 8 large-scale golf event fundraisers alongside Jack and Barbara Nicklaus to support the PKU community. Jerry served or serves on the boards of flok, NPKUA and PKU Hope Foundation. He is a partner at KPMG LLC and lives in Northern Virginia with his wife and 3 kids (and their grandma).

 Brenda Winiarski is the founder of Cook for Love. Prior to having children, Brenda was a speech language pathologist with a specialty in Early Intervention and Feeding Issues. After her daughter was diagnosed with PKU, Brenda enrolled in culinary school. Cook for Love was launched in 2009. Its Facebook group is the largest and most active online support group for Inborn Errors of Metabolism (IEM), with almost 9,000 members. Brenda volunteers at her local clinic, helping patients with various IEM at different stages in life.

Adrian works in Financial Controls and Compliance at Microsoft. He serves on the flok Finance Committee and previously held the position of Treasurer. Adrian has a daughter with MSUD and likes to fly fish, and play and coach soccer.

 Brittany is a nurse practitioner within the Metabolism Program of the Genetics & Genomics division at Boston Children’s Hospital. She serves as the Lead Nurse Practitioner for the divisions of Genetics and Metabolism, Developmental Medicine, Ophthalmology, Adolescent Substance Use and Addiction Program (ASAP Program), and the Vaccine Clinic. With extensive experience, Brittany specializes in caring for patients with inborn errors of metabolism and actively participates in clinical research.

Brittany earned her Bachelor of Science degree from Merrimack College and her Master of Science in Nursing from Simmons University. Currently, she is completing her Doctor of Nursing Practice program at UMass Boston. She volunteers in several committees in the rare disease community, and has presented at conferences and patient events. 

As an adult living with Phenylketonuria (PKU), Brittany is dedicated to advocating for and working with the PKU community and those with inborn errors of metabolism. Brittany finds fulfillment in educating patients and fellow healthcare providers, offering a unique perspective as both a provider and a patient. Active in community advocacy, Brittany continually strives to enhance patient care and remains committed to improving outcomes in rare diseases.

Jackie is the Director of Public Engagement at the National Humanities Center, and an adult with PKU. She was a Major Award recipient of the Guthrie-Koch PKU Scholarship in 2006.

Whitney is a data privacy and technology partner at K&L Gates who lives on Bainbridge Island, WA with her 3 kids, spouse and various animals. She studied genetics before law and now uses her data privacy and intellectual property expertise to advise companies on their data and technology strategies. She’s hopeful that technology and research will create positive lifestyle developments for individuals with inherited metabolic conditions and other individuals with chronic conditions while allowing agency over personal data to remain intact.

Daelyn is a resident at Children’s Colorado in the CU Denver combined pediatrics & medical genetics residency program and was a PhD in Cary Harding’s lab at OHSU working on advancing CRISPR/Cas9 gene editing in PKU. Daelyn’s first triathlon was a full Ironman, which she did 6 months after shattering her distal fibula. Daelyn considers the flok community her family. “This community is my inspiration and my motivation to make the world a better place for them and their families.”

Erin MacLeod is the Director of Metabolic Nutrition at Children’s National in the Rare Disease Institute in Washington DC. She received her PhD from the University of Wisconsin where her research focused on the nutritional management of PKU. She has spent the past 11 years treating a variety of patients with inborn errors but has developed a passion for the treatment of urea cycle disorders. Along with the RDI team, she is trying to better understand growth and feeding challenges in UCDs. She is an active member of Genetic Metabolic Dietitians International (GMDI) as a past chair of the Research Committee and as a current member of the Research, Communications, and Conference Planning Committees.  She is currently serving as President of GMDI.

Kurt is a documentary director and producer who happens to have PKU. His documentary work can be seen in film festivals worldwide, on Amazon Prime, and PBS. Kurt has a Master of Fine Arts in Documentary Studies and Production from Hofstra University and a Bachelor of Fine Arts in Film from the University of Wisconsin-Milwaukee. He's the creator of The Low-Phe Life.