Speakers and Bios

Jerry Walter is the Founder and President of the National Fabry Disease Foundation (NFDF). Jerry manages a diverse set of programs to support the Fabry disease community with two major focus areas. The first is to provide education, support and assistance to people who know they have Fabry disease. The second is to provide education and awareness to increase recognition and diagnosis of people who do not yet know the cause of their Fabry-related illnesses.

As a retired Army Colonel with more than 27 years of active duty military service, Jerry applies his education and experience in nationwide program management, personnel management, strategic planning, operations research, and financial management to managing the NFDF.

Jerry’s interest in providing support to the Fabry disease community stems from his personal experience with Fabry disease. Jerry has Fabry disease himself along with 23 other immediate and extended family members including five family members who passed away between the ages of 37 and 51 due to Fabry disease.

Jerry believes serving the Fabry community is what he was meant to do. After all, in addition to surviving Fabry disease as a 68-year-old male with classic disease, Jerry survived two life threatening bacterial infections, Guillain-Barre Syndrome, and the September 11, 2001 attack on the Pentagon where he was working.

Jerry was born and raised in Michigan. He has a bachelor’s degree in Environmental and Natural Resource Policy from Michigan State University, a Master’s degree in Administration from Central Michigan University, and a certificate in nonprofit management from Duke University. He currently lives in Hillsborough, NC with his wife Angela and two dogs Annah and Malone.

Casey McKenna graduated from Mount Sinai School of Medicine with a MS in Genetic Counseling in 2013. She started her career at the University of Virginia as a pediatric genetic counselor and coordinator for the lysosomal storage disorder program. She then spent six years at InformedDNA as a senior genetic counselor within the ocular, rare disease, and cancer genetics teams practicing telemedicine across multiple states. Casey is passionate about patient education, outreach and advocacy and is excited to be joining the National Fabry Disease Foundation!

Casey has a strong history of volunteerism and working with families affected by rare disease. She was able to attend the Fabry family conference and volunteer at the Victory Junction camp during her time at UVA. As a graduate student, she volunteered at Camp Sunshine’s Fanconi Anemia family camp and conference. In college, she both worked and volunteered at Double H Ranch, a sister (seriousfun network) camp for children with severe health conditions. She is a longtime volunteer with the Virginia Association of Genetic Counselors; she currently serves as treasurer, and has previously held positions of secretary and board of directors.

Amy Niles is a knowledgeable healthcare executive with a passion for growing sustainable health organizations, advocating for patients, and building strategic partnerships to address public health needs. As PAN’s Chief Advocacy and Engagement Officer, she leads the organization’s relationships and partnerships with the patient advocacy and healthcare provider communities, while overseeing public policy and advocacy initiatives.

She developed the framework for PAN’s national advocacy platform in 2013 and has been leading the initiative ever since. As a result of her leadership and proactive analysis of the legislative and regulatory environment, external stakeholders and policymakers have come to view PAN as a thought leader and “go-to” resource. She has been quoted in The New York Times, TIME, and HuffPost, and she has authored and co-authored numerous opinion pieces and articles about Medicare reforms and affordability.

Amy believes that no one with a serious illness should have to worry about how to access and afford treatment. She is motivated every day by the knowledge that she is working to fill gaps in the nation’s healthcare system to support vulnerable populations, one person at a time.

She has previously helped lead successful startups and growth initiatives, including the Together Rx Access program. She co-founded, developed, and served as President and CEO of the National Women’s Health Resource Center (NWHRC), which grew into a national clearinghouse for women’s health information under her leadership. Amy has more than thirty years of experience in health nonprofit leadership, including strategy, external relations, and board governance, but her colleagues are most impressed by the way she leads with heart and her dedication to every person PAN serves.

Stephanie Marshall is the Director of Patient Advocacy for The Assistance Fund (TAF), an

independent charitable patient assistance organization that supports patients and families

living with life-threatening, chronic, and rare diseases access to critical treatment through

financial assistance, education, and advocacy.

With more than 25 years policy, advocacy, and communications experience in the public,

private, and non-profit sectors, Stephanie has devoted her entire career to improving health

and quality of life for individuals, families, and communities. At TAF, she collaborates with

patient advocacy organizations to ensure TAF’s programs and services meet the needs of

patients and caregivers.

Stephanie lives in Washington, DC, and is a graduate of Washington University in St. Louis.

Jennifer Noonan joined Accessia Health as the clinical program director in April 2021 with 23 years of clinical nursing experience. In 2022 she was promoted to senior director of clinical programs and compliance. With extensive experience not only in the clinical setting but as a manager of clinical programs in a variety of settings, Jennifer’s deep knowledge of the operational program design and delivery of services to patients in highly regulated arenas ensures a safe and exceptional patient experience. 

She started her career in the emergency department at St. Mary and Elizabeth Hospital in Louisville, KY. In her 17 years there, she served in leadership roles as well as being devoted to the clinical development, training, and implementation of the first electronic medical records system. Additionally, her focus included several patient-centered process improvement initiatives. She moved into hospice and palliative care in 2014 and has served in leadership roles for both adult and pediatric patients. Jennifer earned her associate degree in nursing at Kentucky State University, her bachelor’s degree in nursing at Western Governors University, and her master’s degree in nursing informatics with a focus on data analytics at Western Governors University.

When she is not spending time with her family and two rescue dogs, you can find her practicing martial arts (Taekwondo and judo), rockhounding, hiking, or traveling.

Mike Spigler has served as vice president of Patient Services and Kidney Disease Education for the American Kidney Fund (AKF) since July 2015. Mr. Spigler oversees a spectrum of programs and services: prevention activities, top-rated health educational resources, and direct financial assistance that enables kidney patients to access lifesaving medical care, including dialysis and transplantation.

Mr. Spigler has more than 20 years of experience in creating and managing health education programs for a multitude of chronic health conditions, including kidney disease, cancer, food allergies and anxiety disorders. In 2011, he was among the first group of health educators named Master Certified Health Education Specialists by the National Commission for Health Education Credentialing.

Prior to joining AKF, Mr. Spigler served as vice president of education for Food Allergy Research & Education (FARE), a nonprofit organization in Northern Virginia that sought to improve the quality of life and health of individuals with food allergies.

This is Mr. Spigler's second time working for the American Kidney Fund. He also served as AKF's director of public education from 2003–08 before moving to Boston to serve as the program director of the International OCD Foundation.

Dr. Stacey Feuer is the Director of Health Psychology for a large medical group in the Chicago area, and a licensed Clinical Health Psychologist. She additionally holds a master’s degree in Leadership Development in Healthcare and the Biotechnology Industry. Stacey has a passion for working with individuals living with chronic medical illness as psychologist, healthcare consultant, and speaker. Through her work, she helps patients live healthier, more resilient lives while coping with a wide range of medical conditions. She specializes in individuals living with the special challenges of rare, ultra-rare, and/or genetic diseases. Dr. Feuer believes that health is more than just the sum of our physical ailments. She aims to help patients develop and increase an overall sense of well-being in their daily lives even while living with chronic medical issues. 

Stacey was diagnosed with Gaucher Disease Type 1 in 1997, and has been a speaker, consultant and advocate in the Gaucher and rare disease community for more than twenty-five years. She enjoys educating and connecting with patients, families, medical providers, and industry leaders about the experiences of those living with a rare, genetic disorder. She serves on several boards and committees in the rare disease space, including executive board member for the Gaucher Community Alliance and member of the IL Rare Disease Commission. In her free time, she enjoys reading, traveling, and playing the violin.

Chelsea Kavanaugh, MS, CHES® is a Certified Health Education Specialist with expertise in improving mental and physical wellbeing through research, education, and the promotion of healthy behaviors. As Senior Manager, Public Safety & Health Care Initiatives at NAMI, Chelsea develops educational content and curricula for NAMI Frontline Wellness, NAMI Hearts+Minds, as well as grant-funded and partnership projects.

Christina Bott, M.A., joined NAMI in 2019 and currently serves as Director of Public Safety and Health Care Initiatives. Christina has worked as a program manager and educator, including in community mental health and CIT programs, as well as with first responders, veterans, and justice system programs. In addition to education and content development, Christina oversees the NAMI Frontline Wellness initiative and manages collaborative projects with partners and funders.

Senior Account Manager - Susan joined KGA in October 2010 and her focus is strategic account management, driving program engagement and assessment of utilization data. She has a background in finance, project management and operations from financial services, consumer products and manufacturing industries.  Susan is a member on the Board of Directors for The Addiction Referral Center, a not for profit 501(c)(3) corporation. Susan received her BS in Business Administration from Babson College.

Joanie Vignovich is a Patient Education Liaison(PEL) with the pharmaceutical and healthcare company, Sanofi.  Joanie currently works in the Rare Disease division, educating and supporting patients and their families, throughout Georgia, who have been diagnosed with a rare lysosomal storage disease. 

Prior to joining Sanofi, Joanie worked for many years as a genetic counselor, both at the University of Pennsylvania and then at Emory University, where she specialized in prenatal genetic counseling and infertility.  Joanie then moved into the pharmaceutical arena working in prenatal genetics at Integrated Genetics(formerly Genzyme Genetics).   Joanie’s love of genetics and passion for patient care has allowed her to serve countless patients throughout her career, sometimes at the most challenging times of their lives.  Joanie feels that her patients inspire her daily and she strives to always treat them with compassion, understanding and grace.

Joanie is a native of Pennsylvania and obtained her Master's Degree in Public Health and Genetics from the University of Pittsburgh.  Outside of Sanofi, Joanie enjoys traveling, hiking, weight training, trying new restaurants, and spending time with her family and friends.

Christie Hussa is a Patient Education Liaison (PEL) at Chiesi Global Rare Disease.  She has supported patients with rare diseases for the past 20+ years in different capacities and is excited to be working with the Fabry community. 

Susan Flynn, a nurse for 38 years, has spent her career empowering patients and families through education and self-advocacy. Additionally, Susan volunteers with nonprofit agencies such as Samaritans and the Merrimack Valley Medical Reserve Corps. Susan continues her passion of empowering patients in her current role as a Patient Education Liaison with Amicus Therapeutics.

Jill Pollander is the Vice President of Patient Services at the National Organization for Rare Disorders (NORD). As a member of NORD’s leadership team, she oversees NORD’s Patient Services Department including Patient Assistance Programs, Information & Resource Services and Clinical Trial Support. In this role she collaborates with many stakeholders in the rare disease space including patients, families, caregivers, advocacy & research groups, pharma and biotech.

As a registered nurse, she has over 30 years of diverse professional healthcare experience, from the emergency department to long-term care with a specialty in pain management and palliative care, as well as work in academia and risk management and mitigation.

Always a nurse regardless of role, Jill is a fierce advocate for patients and their access to appropriate care, treatment, and resources.