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Meet Our Board

President (and NPC parent)

SARA MCGLOCKLIN

Sara McGlocklin is the co-founder and President of Hope for Marian Foundation, which was inspired by the diagnosis of daughter, Marian, at 18 months old with NPC. At the time, Marian was the youngest child with NPC to access an experimental therapy. Marian is eight years old today and continues fighting alongside other NPC families and organizations.

 

Sara advocates for patients with NPC including at presentations to Congress, the Duke Margolis Center for Health Policy, FDA and industry. She has also shared Marian’s story on several national platforms. Sara is a licensed attorney in California and specialized in child welfare before focusing on rare disease advocacy for patients with Niemann Pick Type C. Sara lives with her husband and three children in Los Angeles County.

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Vice President (and NPC parent)

PAUL MCGLOCKLIN

Paul McGlocklin is Vice President of the Hope for Marian Foundation, and has been a member since its inception in 2017. Paul is Marian's father, and dreams of a day when Marian and all people living with Niemann-Pick Type C will have complete access to numerous treatment options. Paul believes that strong advocacy can lead to changes in the way people think about the development and approval of life-saving therapies for those afflicted with ultra-rare diseases.

 

Paul is an partner at a private law firm and has primarily worked with clients in public education since 2008. Paul lives with his wife and three children in Los Angeles County.

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Vice President (and NPC parent)

MEREDITH PIOTTI

Meredith Piotti is a Vice President and Board Member of Hope for Marian Foundation. Meredith’s oldest daughter, Reagan, was diagnosed with Niemann Pick Type C in 2021.Reagan was able to gain access to Adrabedatex expanded access during the small window of time opened in 2021 due to community advocacy efforts led by Hope for Marian.

 

Meredith is a patient ambassador for the International Niemann Pick Disease Registry. She works for Wolf & Company, a national accounting firm, in the risk management advisory group. She oversees the firm’s data analytics group and automation strategy. Meredith lives with her husband and three children near Foxborough Massachusetts.

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Vice President (and NPC parent)

SARA PETERKA

Sara Peterka is the proud mother of Emma, who was diagnosed with Niemann-Pick Type C at 26 months old. The heartbreaking diagnosis, followed almost immediately by the possibility of losing access to the life-saving experimental therapy Emma had just started, pushed Sara and her husband to get involved with the NPC community's advocacy work.

 

Sara has spent over 14 years of her career working in advertising, with a focus on cause-oriented brands in the health & wellness sectors. Sara was part of the team that developed the Save Our Medicine campaign, lending her marketing experience and creative background to the work. Sara lives with her husband, Mitch, and their two children in the Twin Cities, where they love spending time outdoors all year round.

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Secretary

ARIEL WINAWER

Ariel Winawer serves as Secretary for Hope for Marian Foundation. Ariel is an attorney at Orrick, Herrington & Sutcliffe where she specializes in securities litigation and shareholder derivative lawsuits, government investigations and enforcement actions, and other complex business litigation.

 

Ariel also maintains a robust pro bono practice focused on immigration and civil rights matters. Ariel lives with her husband, son, and dog in the San Francisco Bay Area.

Ways You Can Help

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DONATE

Your donation will support patient access to medication and information as well as treatment research and development.

CURRENT INITIATIVES

Educating yourself on our current initiatives will help keep you up-to-date on the ever-changing landscape of treatment.

OUR STORIES

Reading stories of the people and their families who are affected by NPC will help you to understand what they are facing.

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