Paige Rivard, MBA
Chief Executive Officer
Paige joined the staff of PWSA |USA in April 2020 as CEO. In this role, she is focused on engaging with families whose loved one has PWS and increasing family support services, as well as increasing advocacy and awareness of PWS throughout communities across the country.
Paige worked in the credit card processing industry for 20 years. She retired as Vice President of National Accounts in 2015. Paige holds a BS in Business Administration (Marketing) from Kansas State University and an MBA in Healthcare Management from Creighton University. She is active in her community, serving on the Board of Directors for Munroe-Meyer Institute, which provides evaluation, treatment and research for patients and families living with disabilities and special health care needs. She serves on the Quality and Patient Safety Leadership Team at Children’s Hospital in Omaha. Paige is a member of the Superintendent’s Special Education Advisory Council (SEAC) for the Omaha Public School District. In 2019, Paige created a non-profit organization, which supports patients and families affected by PWS in Nebraska. Paige brings with her a passion for advocating for newly diagnosed families and increasing awareness of resources to families affected by PWS.
Paige is married to Dr. Matt Rivard and they have two children. Her daughter, Jordan, also has a passion for children with special needs and is working toward a career in providing behavioral health support to that community. Her son, Jake, was born with two genetic disorders, PWS (UPD) and Neurofibromatosis (NF-1). As there aren’t experts in both of these rare disorders, Paige and Matt travel with Jake to see multiple specialists in several different states.
Rikka Bos, MPA
Director of Development & Communications
Rikka is a Michigan native who now resides in sunny Florida with her fiancé and their son, Bear. Their daughter, Rileigh, lives in Tennessee with her fiancé. For nearly 20 years Rikka has worked with organizations and companies in the areas of business development and fundraising, marketing, and communications. She graduated from Ferris State University with a bachelor’s degree in Healthcare Systems Administration and attended graduate school at Grand Valley State University where she earned her Master of Public Administration (Nonprofit Administration concentration). In her free time, Rikka enjoys spending time with family, reading, writing, and staying active. She is a mega-fan of Florida’s beautiful oceans and her Devon Rex, Anna Karenina.
Director of Family Support
Stacy Ward, Director of Family Support, lives in Troy, NY with her husband Jeff and their children, Jeffrey and Collin. Prior to joining the PWSA|USA staff in 2016, Stacy was the Associate Director of Residential Living for a not-for-profit in Albany, NY that specialized in supporting individuals diagnosed with PWS. Stacy has a master’s degree in Psychology/Applied Behavior Analysis, and a certification in Special Education Advocacy from the William and Mary College of Law Pele Clinic. In her personal life, Stacy is actively involved in her local school district and serves on the board of directors for several youth organizations in her city. In her free time, she enjoys watching her children play sports, hiking with her dog and all things Disney.
Mary S. Burr, DNP, CPNP
Mary S. Burr, DNP, CPNP, became Medical and Research Coordinator on August 1, 2018. A key resource person in PWSA|USA’s Family Support Program, Mary is responsible for providing medical information to new parents and medical providers. Offering medical alerts, current clinical research developments, educational resources and counseling support, this team is designed to meet the specific needs of the members of the PWS community. Mary is also responsible for coordinating the review and dissemination of grant funding and monitoring of current research studies supported by PWSA|USA.
A Certified Pediatric Nurse Practitioner, Mary earned a Bachelor of Science in Nursing at the Catholic University of America, and then Master's and Doctoral degrees from the University of Maryland. Her career includes practicing as an endocrine provider in the division of Pediatric Endocrinology at the University of Maryland Hospital System and clinical faculty member and instructor in the Nursing Program at the School of Nursing at the University of Maryland. She was a part of the multidiscipline medical teams that provided specialty care to children with Spina Bifida and Chronic Pain at the Kennedy Krieger Institute in Baltimore, Maryland. Mary embraces the importance and challenges of directly integrating medical practice, research, educational, and social services into the care that is provided to families and children with complex medical needs.
Erica joined PWSA|USA in January 2020 as Development Specialist. In this role, she works closely with the Development and Communications team to provide the very best and latest information on PWS and serve our generous community of donors. Prior to joining PWSA|USA, Erica worked for Gulf Coast Community Foundation for 15 years in the areas of development and communications. She graduated from the University of South Florida with a BS in marketing. In her free time, Erica enjoys playing the piano, reading, and spending time with her two daughters.
Originally from Egypt, Sarah grew up in Kuwait where she studied Arabic and French languages. She moved to the United States in 2010. She is a legal and healthcare interpreter, and was an Executive Admin for the American Muslim Institute at the Trifaith Campus in Nebraska. Sarah is a new mom of a son diagnosed with Prader-Willi syndrome. She likes to spend time with her son listening to music, singing and reading bedtime stories to him.
Membership & Chapter Coordinator
Andrea is an US Air Force veteran from both active duty and reserves. Andrea has a BAS in Technology Management and has spent the past six years working in community, chapter, and membership development with a focus on public policy engagement. Andrea is a member of the American Society of Association Executives (ASAE), the American Astronomical Society (AAS), and the American Association of University Women (AAUW). In her free time, she leads a Girl Scout troop, volunteers with homeless outreach, and loves to crochet, read, and go hiking. She lives in Sarasota, Florida with her husband, their two kids, dog, and cat.
Jackie has worked directly with children and adults, who have been dually diagnosed, since 1985. She has extensive training, experience, and education in the areas of behavior/crisis management, program/staff development, and residential supports. She has worked exclusively with individuals with Prader-Willi syndrome since 1996, providing educational training, behavioral support, guidance and consultation nationwide. With over thirty years of field experience, she now enjoys her role through Root Connections Consultative Services, LLC as the Executive Program Consultant. Jackie is a board member/treasurer for the PWSA|USA Wisconsin chapter and has served on the board since 1997. From 2006 to 2015 she served on the Board of Directors for PWSA|USA. She also takes an active role in supporting providers as a board member for the PWSA|USA Professional Providers Advisory Board, and on the IPWSO International Professional Providers & Caregivers Board. Since 1997 she has been presenting both nationally and internationally on “Supporting the Unique Challenges of Individuals Diagnosed with Prader-Willi Syndrome.”
Administrative Services Coordinator
Chris Miller joined PWSA|USA in February 2020. In Sarasota, she previously worked 6 years at the Greater Sarasota Chamber of Commerce as Executive Assistant. Before moving to Sarasota in 2008, Chris was Vice President and part-owner of Circle Solutions, Inc., in northern Virginia, a health consulting firm, for over 25 years. She has extensive experience in recruitment and hiring, employee relations, benefits and compensation, office management, and oversight of IT and administrative teams. Chris feels fortunate to be able to bring her skills and experience to help ensure an efficient, energized, and cost-effective infrastructure that allows PWSA|USA to focus on the substance of its mission.
Cheryl Plant has been involved with PWSA|USA since 2017. Cheryl has an extensive background in the areas of Admin/Graphic Design & Marketing. Other areas of experience include caregiving for Alzheimer’s and Dementia patients, which involved transitioning to various assisted living facilities. You can find Cheryl participating in Prader-Will events and constantly trying to program thought based positivity into life’s many challenges.
Parent Support Coordinator
Kristi Rickenbach and her husband John ran a non-profit organization for 12 years. Kristi and John have been married for 30 years and have five amazing children and four beautiful grandbabies. Their youngest child, Justice Faith (16), was diagnosed with PWS (UPD) when she was 1 month old. Justice is currently in the 10th grade and loves helping other kids that are also dealing with PWS. Three of Kristi’s passions in life are her faith, family, and helping families and children that are affected by Prader-Willi syndrome. Kristi is the President of the PWSA Minnesota chapter, a parent mentor, is the PWSA|USA General Conference Coordinator, has been on several PWSA|USA committees, was a board member at PWSA|USA and is currently the Parent Support Coordinator for PWSA|USA.
Kristen joined PWSA | USA in May 2015 as the Accounting Clerk, while finishing the Accounting Operations program at Suncoast Technical College the same year. In this role, she works closely with all department teams to keep our income and expenses on track. Prior to joining PWSA | USA, Kristen spent over 20 years in retail, with a focus on merchandising and management. Kristen and her husband live in Sarasota with their son where they enjoy nature adventures and spending quality time together.
Kim Tula, MS, CSW
Alterman Family Support Counselor
Kim has been a Family Support Counselor with PWSA|USA since 2019. Kim holds a Master’s in Human Services with a specialization in Multidisciplinary Human Services and a Bachelor’s Degree in Psychology and Sociology. Kim is also a Certified Social Worker in Wisconsin. She had worked in a residential care setting since 1990, working with a wide variety of client populations, including children and adults diagnosed with Prader-Willi syndrome and with intensive treatment needs. Prior to joining PWSA|USA as a Family Support Counselor, Kim held positions as a Direct Care Staff, Behavior Specialist, Clinical Coordinator, and a Behavior Services Coordinator. Kim has also been involved in the Youth and Adult Program (YAP), at the National PWSA conference since 2011. In 2015, she was tasked with organizing YAP. In 2020 Kim became the Director of the YAP, YIP, and Siblings Programs for the National PWSA | USA convention. Kim loves working with and supporting individuals with PWS and their families. In her free time she enjoys spending time with her husband and daughter, horseback riding, and gardening.