Our Staff

We’re a team of individuals dedicated to fostering a Prader-Willi community of understanding, advocacy, and empowerment.

Stacy Ward, Prader-Willi Syndrome Association | USA

Stacy Ward, MS, BCBA | CEO

sward@pwsausa.org

Stacy Ward, a longtime leader in the PWS community, has a background rich in non-profit, behavioral health, education advocacy and held multiple successful leadership roles. With 30 years of experience working with individuals with ID/DD and 20 years working with individuals diagnosed with PWS, Stacy brings a variety of skills to the role of CEO of PWSA | USA. Prior to her appointment as CEO with PWSA | USA, Stacy was the Director Family Support.

As Director of Family Support, she expanded upon existing and developed new educational and support programs for individuals with PWS, their families and caregivers increasing Family Support actions by 106%. Prior to that, Stacy spent over 12 years working for Catholic Charities Disabilities Services in Albany, NY where she focused on overseeing both the residential and clinical departments. Stacy earned a bachelor’s degree in psychology and human services from Russell Sage College and her master’s degree in applied behavior analysis from Kaplan University. She possesses a special education advocacy certification from the William and Mary College of Law Pele Clinic and is a member of the Council of Parent Attorneys and Advocates (COPAA) and currently resides in Troy, NY.

Dorothea Lantz, Prader-Willi Syndrome Association | USA

Dorothea Lantz | Director of Community Engagement

dlantz@pwsausa.org

Dorothea Lantz is a licensed Real Estate Broker with ONE Sotheby’s International Realty and is lifetime resident of Miami, Florida. After the birth of her son Hunter in 2017, Dorothea and her husband became involved in PWSA | USA through volunteer and fundraising events. She began working for PWSA | USA as the Community Engagement Specialist in May 2021 and has created an advocacy and awareness program to help educate and activate the PWS community.

In addition to real estate, Dorothea has an extensive background in public service, government administration and is a contributing member of the South Florida and PWS community. She has been a Parent Mentor with PWSA | USA since 2019 and resides on the Advocacy Committee. In addition, Dorothea is an appointed member of the City of South Miami Environmental Review and Preservation Board and a Mentor with the ACE Foundation Women's Leadership Institute. She is a member/specialist with the Institute for Luxury Home Marketing (CLHMS), holds a Transnational Referral Certification under the supervision of the International Real Estate Associates (ICREA) and is a Certified Residential Specialist (CRS), which is the highest credential awarded to residential sales agents, managers, and brokers.

Kristi Rickenbach, Prader-Willi Syndrome Association | USA

Kristi Rickenbach | Parent Support Coordinator

krickenbach@pwsausa.org

Kristi Rickenbach and her husband John ran a non-profit organization for 12 years. Kristi and John have been married for 33 years and have five amazing children and six beautiful grandbabies. Their youngest child, Justice Faith (18), was diagnosed with PWS (UPD) when she was 1 month old. Justice 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, is a past board member for PWSA | USA. She has held committee positions with PWSA | USA and is currently a Family Support Coordinator for PWSA | USA.

Lynn Garrick, Prader-Willi Syndrome Association | USA

Lynn Garrick, MSN, RN | Medical/Research Coordinator

lgarrick@pwsausa.org

Lynn and her family live in Cottage Grove, MN. She is the mother of 5 children, including her youngest son, who has Prader-Willi syndrome. She has been the Nurse and Program Director with AME Community Services, Inc., a residential provider serving adults and children with Prader- Willi syndrome since 2007. She is a board member of IPWSO, their professional providers and caregivers board, and the Minnesota PWS chapter. PWSA | USA has been a significant resource since the birth of her son, and she is honored to help the community through her personal and professional knowledge. In her personal life, Lynn enjoys spending time outdoors with her family, reading, and gardening.

Kim Tula, Prader-Willi Syndrome Association | USA

Kim Tula, MS, CSW | Alterman Family Support Counselor

ktula@pwsausa.org

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.

Sarah Kasaby, Prader-Willi Syndrome Association | USA

Sarah Kasaby | Information & Referral Specialist

skasaby@pwsausa.org

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.

Carrie Larsen, Prader-Willi Syndrome Association | USA

Carrie Larsen | Director of Marketing & Communications

clarsen@pwsausa.org

Carrie joined PWSA | USA in May 2021 as the Director of Marketing & Communications. In this role, she coordinates our social media efforts, creates marketing and communication strategies, and works closely with the PWSA | USA network to share stories that offer help and hope. Carrie graduated from the University of Wisconsin-Whitewater with a B.A. in Broadcast Journalism and a Marketing minor. For three years, she worked as a multimedia journalist and weekend anchor for news stations in Topeka, KS and Madison, WI. Carrie left the news industry to take on a role with a behavioral healthcare nonprofit in Cleveland, OH, where she worked as their Marketing and Communications Coordinator for four years. Carrie lives in Cleveland, Ohio with her husband Steve and their Cavapoo, Henry. In Carrie’s free time, she enjoys picking up her camera to capture anything and everything, and spends a lot of her weekends hiking through the Cuyahoga Valley National Park.

Kristen Starkey 1, Prader-Willi Syndrome Association | USA

Kristen Starkey | Accounting Clerk

kstarkey@pwsausa.org

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.

Melanie McDonald 1, Prader-Willi Syndrome Association | USA

Melanie McDonald | Director of Development

mmcdonald@pwsausa.org

Melanie McDonald joined the staff of PWSA | USA in January 2021 as full-time Director of Development. Melanie brings over 20 years of non-profit experience to her role at PWSA | USA and feels honored to put those skills to work for our PWS community. 

After over 20 years in various nonprofit leadership roles across New England, Melanie is eager to put her skills in Fundraising to work for PWSA | USA. Melanie has held Director positions at regional and state-wide organizations in the Arts, Economic Development, and in Jewish organizations, most recently as the Director of the Jewish Federation of New Hampshire. Melanie enjoys her role at PWSA | USA where she can focus her passion and enthusiasm for giving back to a community that continues to be so critical to her own family. Melanie believes fervently that participating in fundraisers can help to empower our community when so much about the PWS journey feels beyond our control.  

Melanie resides in southern New Hampshire with two amazing children, Henry (age 11), and Josephine (age 4, living with PWS) and their dog Buddha. 

Andrea Hughes 1, Prader-Willi Syndrome Association | USA

Andrea Hughes | Database Coordinator

ahughes@pwsausa.org

Andrea Hughes joined PWSA | USA in September 2022 as the Database Coordinator. In this role, she works closely with all departments to maintain the accuracy of the data. She brings over 20 years of database experience in the nonprofit and educational sector to her role with PWSA. Andrea is also a notary public and lease signing agent as well as a certified Zumba instructor. Andrea resides in New Jersey with her husband Sean. In her spare time, she loves to travel, read, dote on her children, and play with her two dogs, Scottie and Kobe.

Angela Frazier, Prader-Willi Syndrome Association | USA

Angela Frazier | Events Coordinator

afrazier@pwsausa.org

Angela has been married for 20 years and lives with her family, including 4 children, in Austin, Texas. Her youngest, Joseph, was diagnosed with PWS when he was 2 months old and is currently in 4th grade. Angela has a love for gathering people around a cause, especially helping raise awareness for PWS. Over the years, she has helped multiple non-profit organizations with fundraising primarily through special events. It’s a natural fit for her since she has been in the hospitality and event planning industry for over 20 years. Angela enjoys travelling and spending time with her family often watching her girl at dance and her boys playing sports.

Anne Fricke, Prader-Willi Syndrome Association | USA

Anne Fricke | Marketing & Communications Coordinator

africke@pwsausa.org

Anne Fricke has been passionate about educating the broader community on PWS since the diagnosis of her daughter Freya in early 2012. She knew then that her daughter’s safety depended on the education of their community. It began with a blog and a fundraiser but transitioned to a much larger project in 2018 when she created the podcast Walking with Freya. In 2023, she turned her sites to caregiver support by creating an online space of varied resources for parents and families in the disability community. She is the mother of 3 daughters, wife to a commercial fisherman, poet in both performance and the written word, freelance writer, novelist, and an avid gardener who loves living in far northern California nestled amongst the redwoods along the Pacific coastline.