Reinvention Advisory Committee
Reinvention Advisory Committee Members
Lisa Chavez, Co-Chair – “I’ve been a member or the NNPDF Board for the past 5 years. My intent in volunteering in this capacity has been to honor our daughter’s legacy and also to show my respect for all the Board members who have gone before me, creating a safe haven for my family when we received our diagnosis. My goal is to work with the current Board members, office staff and community so that the NNPDF Foundation can remain a place of refuge for all our NPD families and individuals.”
Dr. Andy Lieberman, Co-Chair – Dr. Andrew Lieberman is the Gerald D. Abrams Professor in the Department of Pathology and Director of Neuropathology at the University of Michigan. Dr. Lieberman received his BS from Duke University and his MD, PhD from the University of Maryland Medical School. He completed residency training in Anatomic Pathology and fellowship training in Neuropathology at the University of Pennsylvania. He trained as a research fellow with Dr. Kenneth Fischbeck at the Neurogenetics Branch NINDS, NIH, and then joined the University of Michigan Medical School faculty in 2001. He serves as Director of Neuropathology at the University of Michigan Medical Center, and is Co-Director of the Michigan Protein Folding Diseases Initiative. Dr. Lieberman’s research has focused on the mechanism of neurodegeneration in inherited neurological disorders. His laboratory uses cell culture and mouse models to explore the pathogenesis of Kennedy’s disease, a polyglutamine expansion disorder, and Niemann-Pick C, a lysosomal storage disease resulting from impaired lipid trafficking.
Dr. Marc Patterson – Marc C. Patterson, M.D., is currently a professor of neurology, pediatrics and medical genetics, and chair of the Division of Child and Adolescent Neurology. He previously served as director of the Child Neurology Training Program at Mayo Clinic (2008-2016).
His research and practice are focused on rare diseases in children, including; Neurogenetics and developmental disorders, Neurometabolic disorders in general, Niemann-Pick Disease Type C, Other lysosomal diseases (including glycoproteinoses), Mitochondrial cytopathies, and Congenital disorders of glycosylation.
These are areas in which he has published more than 300 peer-reviewed papers and book chapters. He has presented widely throughout the United States and internationally, both to professional and lay organizations. Dr. Patterson has received funding support from NIH, industry and private foundations. He is currently an editor for the Journal of Inherited Metabolic Disease. He became editor-in-chief of the Journal of Child Neurology on Jan. 1, 2014, and subsequently editor-in-chief of its open-access sister journal, Child Neurology Open.
Dr. Ed Schuchman – Dr. Schuchman received his Ph.D. in Human Genetics from the Mount Sinai School of Medicine in 1983, and after completing a postdoctoral fellowship at Yale University, returned to Mount Sinai and has been a faculty member since 1986.
His laboratory has been studying the biology of lysosomal enzymes, genes and diseases for more than 25 years, achieving a number of breakthroughs towards the development of novel therapies for lysosomal disorders. For example, Dr. Schuchman’s team was the first to isolate genes encoding lysosomal enzymes linked to Types A and B Niemann-Pick, Mucopolysaccharidosis Type VI, and Farber disease.
His research related to Niemann-Pick disease led to the first genetic screening program; the completion of several enzyme replacement, stem cell and gene therapy studies in the mouse model; and collaborations with Genzyme Corporation, in which clinical trials of enzyme replacement therapy for Type B Niemann-Pick disease are now underway. In 2003 he was recipient of the Mount Sinai School of Medicine’s Award for Academic Excellence, and in 2008 the Dean’s award for Translational Science.
Dr. Schuchman has published over 150 peer-reviewed research articles on lysosomal enzymes and storage diseases. A reviewer for leading scientific journals, he has served on and chaired numerous NIH grant review committees, and is a member of several scientific advisory boards.
In 2003, Dr. Schuchman received the Francis Crick Professorship of Human Genetics, supported in part by an endowment from the GDF. This Chair was established at Mount Sinai in honor of Dr. Francis Crick, who received the Nobel Prize for his work on the structure of DNA. Dr. Schuchman is the first recipient of this honorary endowed Chair.
Dr. Justin Hopkin – “I am honored to recently be selected as a board member for the NNPDF. As a board member, I will do my best to make the NNPDF fiscally sound and solvent organization. I look forward to helping the NNPDF assist great researchers who are working toward treatments for NPD. The Foundation has been an excellent resource for me and my family, and I hope to help the Foundation continue to grow in its role as the center for information sharing for NPD.”
Jill Flinton – “I volunteer to remember my son Dan, and to provide financial experience to the NNPDF.”
Jamie Ring – Jamie Ring (BUSPH ’04) is the Head of Patient Advocacy at Spark Therapeutics, a leader in the field of gene therapy. In her role, Jamie is responsible for patient advocacy activities related to Spark’s disease areas of interest, particularly the Inherited Retinal Disease space. Prior to joining Spark, Jamie spent 10 years at Genzyme, a Sanofi company where she most recently served as the Vice President of Patient Advocacy and Humanitarian Programs – Rare Diseases. In that role, Jamie provided strategic oversight of all advocacy programming and managed external partnerships related to Genzyme’s global humanitarian programs which provide free therapy to hundreds of patients around the globe. Prior to Genzyme, Jamie worked at Biogen supporting patient programs for both the Multiple Sclerosis and Non-Hodgkin’s Lymphoma disease communities. Additionally, Jamie worked at the ALS Therapy Development Institute as the Associate Director of Programs, responsible for ALS disease awareness initiatives and fundraising campaigns. In 2013, Jamie was voted by PharmaVoice magazine as one of the 100 most inspiring leaders in the pharmaceutical industry.
Jamie holds a B.A. in Sociology from Union College, Schenectady, NY and a M.P.H. in Social & Behavioral Sciences from Boston University.
Barbara Wedehase – Barbara Wedehase was the Executive Director of the National MPS Society for 15 years and oversaw the tremendous growth of the Society and its programs, including over $6.5 million in research funds awarded. She has a Masters in Social Work from Washington University in St. Louis, Missouri and is a Board Certified Genetic Counselor. She was a Clinical Assistant Professor of Pediatrics in the Division of Genetics and Metabolism at the University of North Carolina prior to her work with the National MPS Society. On a national level, Ms. Wedehase served on the Steering and Executive Committees of the Lysosomal Disease Network and was the founding leader of the Lysosomal Disease Network’s Council of Patient Advocacy (COPA) groups. She participated in an expert working group for a lysosomal disease educational initiative; served on the MPS I Technical Expert Panel for admission of MPS I to the newborn screening panel; and helped to establish the LSD Research Consortium and the awareness program, Join the Search for Patients with MPS. Internationally, Ms. Wedehase served on the Program Committees of the International MPS Societies Network and the International MPS Symposiums; and was a member of the Ethics Advisory Group for the MPS VI gene therapy clinical trial. Since retiring in 2015 she has consulted with stakeholders developing treatments for rare diseases, is on the Advisory Committee of the NC Newborn Screening Pilot Study and is a member of the certificate training faculty for the Professional Patient Advocates in Life Sciences (PPALS).
Michelle Davis – Michelle joined the IFOPA as Executive Director in February 2016. The majority of her career has been spent working in the nonprofit sector; seven years of which were spent leading a nonprofit chamber of commerce training and consulting with local nonprofit staff, boards of directors and volunteers. In that role, Michelle was exposed to many deserving causes, but her passion has always been in working with national voluntary health agencies, including tenures at the National Kidney Foundation and Polycystic Kidney Disease (PKD) Foundation. While at the PKD Foundation, Michelle became acquainted with the rare disease community which is part of what drew her to the IFOPA. At the PKD Foundation, Michelle served in the role of Chief Development Officer where she worked in all aspects of fundraising and maintained the organization’s relationships with industry. Michelle also led the organization’s education and advocacy initiatives, including organizing patients for an FDA Advisory Committee meeting for the review of the first-ever treatment for PKD, tolvaptan. At the IFOPA, Michelle is partnering with the Board of Directors to develop the organization’s strategic plan and corresponding fundraising, marketing and communications and advocacy and awareness plans. She is also leading the development of family programs and services to better serve and connect the FOP community. Michelle is based in Kansas City, Missouri.
Amy Kant – Amy Kant, Principal, AEK Consulting, is a seasoned non-profit manager with over 25 years of leadership experience in advocacy, culture, education, environment and health care. With a deep passion for aligning mission and business strategy, Amy helps organizations to adapt to the changing social and economic landscape, providing custom, capacity building services to non-profits, associations, foundations, and philanthropists. Organizations often need tools to navigate sustainability, align growth, align management practice, focusing of aspirations, and maximizing investments. Social impact organizations often need tools to align growth and management practice. Foundations and philanthropists frequently seek to focus aspirations and maximize Amy begins client engagements with discovery to delineate goals and a work plan.
Currently she provides transition and interim executive leadership management, board coaching, fundraising and marketing, and strategic planning services to non-profits, associations, foundations and philanthropists. She has served in campaign leadership planning and management roles for mid-size organizations like Hebrew Senior Life in Boston, Massachusetts for their $100 million campaign to build an innovative continuum of care model for seniors. She also has experience overseeing high profile venture philanthropy marketing programs at the SEED Foundation in Washington D.C. Early in career, she worked in disability advocacy, volunteer management, and community organizing. She currently lives in the Boston area and is a Board member and Co-Founder of the Boston Philanthropic Advisors Roundtable, cross sector network of professionals.