CEO
Kandi Pickard
Email KandiKandi provides vision and leadership, working collaboratively with individuals and organizations to support the entire Down syndrome community. Kandi holds a degree in business administration and brings two decades of experience in operations and effective administration management to her role at NDSS. Kandi’s involvement in the Down syndrome community first began as a local volunteer and advocate after her youngest son, Mason was born with Down syndrome. Ten years later, she leads NDSS with a focus on building community and keeping people with Down syndrome at the center of everything the organization does. Kandi’s vision for the future of NDSS includes resources, programs, and support for individuals with Down syndrome and their families from birth to adulthood, with a special focus on caregiving, public health, and supporting aging adults.
President
Hampus Hillerstrom
Email HampusHampus supports the vision and direction of NDSS, while leading the research, health, education, employment and community engagement initiatives of the organization to better serve the Down syndrome community. With an extensive background within the biotech and pharmaceutical industries, Hampus’ knowledge base and expertise will help lead the way to continue tackling unmet medical challenges currently facing our community. He has served in various leadership roles including co-founding Proclara Biosciences, a biotech company that focused on developing novel treatments for Alzheimer’s disease and Parkinson’s. Having had an arm prothesis since birth, Hampus is well acquainted with the disability community. Hampus, his wife Lianor, and their two sons Oskar and Sebastian, live in Massachusetts. Oskar, who has Down syndrome, motivates Hampus to achieve NDSS' mission every day.
Manager of Community Events
Misty Adams
Email MistyMisty is the Manager of Community Events for the National Down Syndrome Society (NDSS) where she oversees the development and growth of the National Buddy Walk® program and manages NDSS charity racing events, Racing for 3.21 on World Down Syndrome Day and Run for 3.21 events. Prior to joining NDSS, Misty served as president of her local Down syndrome organization and organized her local Buddy Walk® and other peer-to-peer fundraising activities. Misty has a bachelor’s degree in Criminal Justice and Psychology and a master’s degree in Criminal Justice from East Tennessee State University.
Senior Manager of Marketing and Communications
Shannon Bergstresser
Email ShannonShannon helps elevate the brand, mission and voice of NDSS through digital marketing campaigns, website initiatives, and email marketing plans. Shannon has a strong background in marketing communications with experience in both public relations and marketing roles for nonprofit and for-profit organizations. She holds a bachelor’s degree in communications from the University of Buffalo. Her son Dayton was born with Down syndrome in 2017 and is her inspiration to help serve and better the community every day.
Office Assistant
Alex Bolden
Email AlexAlex provides operational support for the office and staff in Washington, D.C. including shipping materials for events and assisting with merchandise inventory and social media. Alex is also part of the NDSS DS-Ambassador program and assists with program webinars. Alex graduated from the Mason LIFE Program at George Mason University in 2020 and has interned for the office of Representative Greg Harper and at Fort Belvoir.
Development Outreach Coordinator
David DeSanctis
Email DavidDavid DeSanctis fosters connections with the Down syndrome community and ensures that NDSS supporters feel appreciated. David has used his outgoing personality to build relationships on behalf of NDSS through thank you phone calls and emails, public speaking, social media support, and attendance at events like the NDSS Adult Summit, Gala and Auction, and NYC Buddy Walk. Prior to starting at NDSS, David starred in the feature film, “Where Hope Grows.” In 2022, he co-starred in the Hallmark film, “Color My World with Love,” and he continues to be an inspiration for people with Down syndrome around the world.
Director of Events
Amy Drow
Email AmyAmy provides strategic leadership and oversees the planning, execution, and success of NDSS events, including the annual Gala﹠Auction, New York City Buddy Walk®, and national programs, to raise funds and awareness for the Down syndrome community. Amy’s connection to the community stems from her older brother Michael. In high school, she volunteered with Best Buddies and received the ‘Florida Friendship of the Year Award’, which sparked her interest in nonprofit work. Most recently, Amy spent six years at the Down Syndrome Association of Central Florida supporting families through community engagement, fundraising, and events. Amy holds a Bachelor of Science degree in event management from the University of Central Florida.
Communications Coordinator
Abbi Elliott
Email AbbiAbbi utilizes social media and other channels to share the work of NDSS and to amplify voices within the Down syndrome community. While Abbi most recently worked as a special education teacher in southern Maine, her relationship with the disability community has been ongoing since childhood when her brother was diagnosed with an intellectual and developmental disability. Abbi holds an undergraduate degree from the University of Georgia and is completing her graduate degree in special education through the University of Maine.
Administrative Coordinator
Madison Essig
Email MadisonMadison Essig is the Administrative Coordinator at the National Down Syndrome Society (NDSS), where she provides operational support to the President and CEO and all departments within NDSS. She is a strong advocate for inclusive education, disability rights, and community acceptance. Additionally, she is a passionate speaker about the abilities of people with Down syndrome. Madison received her B.A. in Social Justice ＆ Human Rights from George Mason University, where she received a Community Engagement Medallion for her advocacy and community engagement and was the first student with Down syndrome elected as a student senator.
Director of Advocacy & Public Policy
Sean Feely
Email SeanSean Feely leads the organization’s advocacy work on federal, state, and local policies that impact people with Down syndrome. Sean has over a decade of experience in government relations and has advocated for patient groups, healthcare providers, and other organizations before Congress and the Executive Branch. He holds a B.A. in Government from Cornell University.
Senior Manager of Donor Relations
Janice Fountaine
Email JaniceJan brings her experience in data management and analysis, gift processing and stewardship, prospect management and donor development, and events (charity athletes) to the NDSS team. Jan previously served as Donor Services Manager at DetecTogether, where she successfully implemented Salesforce database software and increased productivity and collaboration across organizational departments. Prior to her nonprofit work, Jan worked in the medical billing industry, fostering strong provider and customer relationships.Helping people has been the motivation behind Jan’s career choices. She looks forward to working together with the team at NDSS and serving the Down syndrome community.
Digital Engagement Coordinator
Katelyn Guest
Email KatelynKatelyn plays a key role in promoting and advancing NDSS’ mission through digital media channels, website, and email. Her work in the disability community began at a local nonprofit coffee shop that offers employment training for people with intellectual and developmental disabilities. Katelyn previously worked at a nonprofit supporting independent living for individuals with disabilities, the Indiana Senate, and, most recently, at United Way NEXT where she focused on marketing and events.
Chief of Staff
Colleen Hatcher
Email ColleenColleen has worked since 2016 to strengthen relationships with and among NDSS supporters, community members, families, partners, and affiliate organizations. Colleen works directly with stakeholders to advance brand awareness, foster strong relationships with the Down syndrome community and strengthen connections to NDSS. Colleen has a bachelor’s degree in elementary special education and a master’s degree in elementary special education, severe disabilities from the University of Maryland.
Communications Associate
Luke Hickey
Email LukeAs the Communications Assistant, Luke plays a key role in supporting the Communications Team with a range of initiatives, including special projects, social media strategy, and video content creation. He also contributes to the success of NDSS events throughout the year, assisting with event setup, guest coordination, and representing the organization through speaking roles.
Office Manager
Emily Ingmire
Email EmilyEmily provides operational support for the D.C. office and staff. Emily started her career as a Kindergarten Aide working with students with disabilities. Her professional experiences include real estate, property management, business development, and financial planning. Originally from Indiana, she holds bachelor’s degrees in journalism and international studies from Indiana University.
Director of Development
Benny Kaufman
Email BennyBenny focuses on individual and major giving to advance the organization’s mission. For more than 20 years, he has been involved in the Down syndrome and disability community, including starting his career as an NDSS intern. Most recently, he was Director of Campaigns at Cerebral Palsy Alliance Research Foundation and has worked previously at GiGi’s Playhouse NYC and the Michael J. Fox Foundation. Benny holds a BA in Neuroscience and Behavior from Wesleyan University.
Manager of Special Events
Lauren Donahue
Email LaurenLauren Donahue plans and oversees events that bring people together, celebrate the Down syndrome community, and support NDSS’ mission in meaningful ways. Lauren has a background in event planning and community engagement with several years of experience designing and coordinating events. She holds a bachelor’s degree in Event Management from the University of Central Florida.
VP of Research and Clinical Operations
Lois Kelly
Email LoisLois Kelly, RN, MS, is the VP of Research and Clinical Operations at NDSS, where she leads initiatives at the intersection of Down syndrome research and clinical operations.Since joining NDSS in 2023, Lois has played a pivotal role in advancing the organization’s research efforts. She initially led the suite of studies within LIFE-DSR, NDSS' natural history study. Currently, she oversees post-study activities, collaborating with researchers to analyze LIFE-DSR data and translate findings into meaningful advancements in Down syndrome research, and working to prepare more clinical study site teams to be able to welcome individuals with Down syndrome and their families to their sites to participate in clinical studies.With 18 years of experience in clinical research within the pharmaceutical industry, Lois has held leadership roles in Clinical Operations, overseeing international clinical trials in many disease areas. Most recently, she served for six years as a Senior Director in Clinical Operations, managing global studies focused on chronic kidney disease, advanced kidney failure, and potential anti-rejection therapies for kidney transplant recipients. Early in her career, she worked for many years as a Registered Nurse providing direct care to patients, then pursued advanced education and training as she transitioned to the pharmaceutical and biotechnical industry running clinical studies, and where she held leadership positions in clinical operations across various therapeutic areas.
Director of Community Programs
Jessica Kuss
Email JessicaJessica is responsible for leading NDSS' community programs. Since 2017, Jessica has been a part of the NDSS team as a consultant and a staff member. During that time, she has supported community events for runners, developed resources for our education program, and supported our health and wellness initiatives. A former elementary special education teacher, Jessica holds a bachelor’s degree in K-12 special education and a master’s degree in special education from James Madison University.
Manager of Public Policy
Kayla McKeon
Email KaylaKayla works to advance legislation beneficial to the Down syndrome community. Kayla gained experience working with Members of Congress as an intern for Congressman John Katko of New York. She was named NDSS Self-Advocate of the Year in 2016 and joined the NDSS staff the following year. As the first registered lobbyist with Down syndrome, Kayla is a spokesperson for NDSS and the Down syndrome community, participating in media and speaking publicly both nationally and internationally. Kayla has an associate degree in general studies from Onondaga Community College and an honorary doctorate in Humane Letters.
Health and Wellness Coordinator
Lake Murray
Email LakeLake works to create and support the dissemination, implementation, and evaluation of health and wellness programs. Lake, born with Spina Bifida, has a longstanding commitment to disability advocacy. He previously worked with the organization Special Fishies, promoting drowning prevention and water safety for individuals with disabilities, and for the County of San Luis Obispo in managing Covid-19 guidelines and procedures for over 3,000 County employees. He served as a graduate research assistant for the pilot study of 321go! in partnership with the Down Syndrome Association of Northern Virginia. Lake holds a Bachelor of Science degree in Public Health from Cal Poly, San Luis Obispo and a Master of Public Health in Health Promotion from the George Washington University.
VP of Community Engagement
Kate O'Neill
Email KateKate leads cross-organization efforts to implement an integrated marketing, communications, and outreach strategy. With the Marketing and Community Engagement teams, Kate is tasked with strengthening NDSS' brand identity; broadening the Down syndrome community’s awareness of and engagement with research initiatives; and supporting programmatic and fundraising initiatives across all audiences.As Director of Marketing at the International Institute of New England and the Association of Developmental Disabilities Providers, Kate led complex communications strategies to serve multiple audiences.She previously served as a Senior Director of Field Development at Autism Speaks – New England, where she coordinated awareness and fundraising initiatives in five states and led volunteers to raise $400,000 annually.Kate has worked in the human services field for more than 20 years in roles that incorporate mission marketing, fundraising, and grassroots advocacy. She has served on the boards of several local non-profit organizations and still volunteers as time permits.
Chief Development Officer
Michelle Petronio
Email MichelleBefore she joined the NDSS team, Michelle worked at Agassiz Village as Director of Development. At Agassiz, she was responsible for setting strategic direction and executing comprehensive fundraising and communication effort serving at risk youth.Michelle also worked at DCA as senior consultant to non-profits in board development, fundraising, strategic planning, major campaign planning and execution, and partnership development.Michelle is motivated by the dedication of families who work tirelessly to ensure their loved ones with Down syndrome have the opportunity to live their best lives.Building on the expertise of the full Development team, Michelle will increase philanthropic support in all its forms to accelerate Down syndrome research, and empower families with outreach, support, and resources to improve the lives of people with DS.
Senior Advisor
Michelle Ray
Email MichelleFor more than a decade, Michelle has worked with NDSS as a volunteer, staff member, and consultant to advance the organization’s mission. As a certified RRCA run coach, she coaches NDSS charity racing teams and provides strategic support for the NDSS Athlete Ambassador program, the Run for 3.21, and Racing for 3.21 on World Down Syndrome Day, which she developed while on staff. As the CEO and Founder of Blackwell HR Solutions, Michelle also provides human resources consulting to NDSS. Michelle holds an undergraduate degree from Virginia Tech and a master’s degree in Organizational Development and Human Resources from George Washington University. She also holds a SHRM-SCP and SPHR certification.
VP of Programs
Margot Rhondeau
Email MargotMargot leads the creation of resources and programming to improve health and wellness within the Down syndrome community. Margot joined NDSS in 2020, bringing 14 years of experience working in the health space, both internationally and nationally, to overcome barriers to care and increase health services and programs for underserved populations. Margot holds a Bachelor of Science degree in mathematical economics from Wake Forest University and a master’s degree in international economics and development from Johns Hopkins School of Advanced International Studies.
Operations Coordinator
Melissa Robertson
Email MelissaMelissa oversees key donor services, finance, and data management functions. Since 2014, Melissa has played a critical role in working with internal and external stakeholders to support our programs and ensure proper stewardship of donor dollars. Melissa holds a degree in media from Webster University in St. Louis, MO.
Manager of Community Engagement
Heather Rodriguez
Email HeatherHeather manages and shares resources to support and cultivate relationships within the Down syndrome community. Heather provides direct assistance by responding to helpline calls and emails while ensuring families have access to relevant resources and local support. Additionally, she collaborates with community partners and affiliates to foster partnerships that empower the Down syndrome community, strengthening connections and expanding opportunities for support and inclusion. Heather has more than 13 years of experience working and volunteering in the Down syndrome community, including seven years at GiGi’s Playhouse Inc. Most recently, Heather worked at C＆S Companies building their digital media presence.
Director of Community Partnerships and Engagement
Ryan Rotundo
Email RyanRyan leads the planning, development, and oversight of programs critical to the Down syndrome community, such as education and employment. Ryan has been a leader in the disability community for more than fifteen years. He has served at the state level on the North Carolina Council on Developmental Disabilities since 2018 and is currently Vice Chair. He has worked with the North Carolina Department of Public Instruction to develop statewide curriculum for students with disabilities. For over a decade, Ryan served as a high school special education teacher, with a focus on preparing young adults for positive post-secondary transitions. He also has experience developing curriculum to support siblings of individuals with Down syndrome, has worked as a direct support professional (DSP), and continues to share his knowledge and expertise as a guest lecturer and speaker. In 2019, he was awarded the Distinguished Service Award by Buncombe County Schools, in partnership with Arc of Buncombe County. Ryan holds an undergraduate degree in special education from UNC – Greensboro and a master’s degree in public administration from UNC – Chapel Hill.
Manager of Federal Government Relations
Kevin Ryle
Email KevinKevin executes NDSS’ advocacy and government relations strategy at the federal level. He monitors federal-level legislative and regulatory activity in employment and labor, education, community integration, and more. Kevin has had various roles supporting and interning with disability organizations, most recently serving as the Public Policy Fellow at the Association of University Centers on Disabilities. Kevin holds a bachelor’s degree in Speech, Language, and Hearing Sciences from George Washington University.
Director of Communications & Marketing
Michelle Sagan
Email MichelleMichelle leads, develops, and implements communications strategies to raise awareness and engage audiences with the work of NDSS. Earlier in her career, Michelle built strong relationships within the Down syndrome community as manager of the New York City Buddy Walk® and the National Buddy Walk® Program. In her current role she manages NDSS’ communications team, overseeing the website, social media, email marketing, media, and branding. Michelle holds a bachelor’s degree in public relations and political science from Syracuse University and a certificate in digital marketing from the Digital Marketing Institute and American Marketing Association.
Manager of Health & Wellness Programs
Dana Sciullo
Email DanaDana engages in outreach, education, and advocacy activities in support of NDSS' health programs. Dana is a licensed and registered occupational therapist with a background in pediatric care. Dana strives to improve the health and wellness of the Down syndrome community by bringing together researchers, medical professionals, and families to learn from each other. She facilitates this by sharing resources, hosting webinars, organizing and attending conference sessions, and supporting health and wellness programming. Dana also manages the NDSS Scientific and Clinical Advisory Board which is a group of researchers and medical professionals who advise NDSS on health-related initiatives. Dana holds two degrees from the University of Pittsburgh.
Senior Manager of Community Resources
Amy Shapley-Farrell
Email AmyAmy joins the NDSS Marketing and Community Engagement team where she will work to strengthen innovative programs and increase engagement with clinical research that supports individuals and families.Previously, Amy served as a program manager at the Infectious Diseases Society of America where she ran several research grant programs including the Microbial Pathogenesis in Alzheimer’s Disease program. Her prior experience includes advocacy and a focus on services to increase accessibility for individuals with disabilities. Additionally, Amy has been providing program support for a childcare training program for children with special healthcare needs since 2022.With an Autism Spectrum Disorder diagnosis, Amy’s son Ethan introduced her to the world of disability advocacy. She has worked in disability rights and services since 2013 as both a program director and a parent-advocate.Amy loves connecting with people and sharing resources that can benefit individuals in their daily lives. She is driven by building relationships and working with others to impact individual, local, national, and global change.
Director of Philanthropy
Deborah Still
Email DeborahDeborah Jackson Still is the Director of Philanthropy at NDSS, where she brings extensive experience in fundraising, strategic communications, and nonprofit leadership. A graduate of the University of Wisconsin–Madison with degrees in International Relations and Political Science, Deborah has held recent leadership roles at Ronald McDonald House Charities–Madison, and as founder of Jackson Consulting for more than 20 years.Deborah’s background – which includes key positions in the fields of fundraising, politics, media, and even an ed-tech startup—has given her a unique lens and a deep commitment to making a difference in her community and beyond.Her connection to LuMind IDSC is both personal and professional, and is rooted in a generational family legacy of healthcare. Her work is inspired by friends with Down syndrome, and shaped by close experiences with Alzheimer’s disease and dementia. Deborah is dedicated to using her skills to support inclusive research and advocacy.Deborah lives in Madison, WI with her two sons and their Labrador. Outside of work, she enjoys traveling, cooking, tennis, hiking, and time on the lake.
Manager of State and Grassroots Advocacy
Genevieve Thompson
Email GenevieveGenevieve engages with advocates' passion and energy nationwide to advance state-level advocacy priorities. Before moving to D.C., Genevieve served as a Community Access Disability Inclusion (CADI) Manager with the Deaf and Blind Services of Minnesota and served the disability community through her work as a Direct Service Provider. Genevieve holds a bachelor's degree in Justice and Peace Studies from the University of St. Thomas in St. Paul, Minnesota, and a master’s degree in public policy from George Mason University.
Development Coordinator
Michelle Viall
Email MichelleMichelle supports NDSS fundraising events including the National Buddy Walk® Program, Times Square Video, NYC Buddy Walk®, NDSS Gala and Auction, Racing for 3.21, Run for 3.21, and more. Michelle also oversees the NDSS Athlete Ambassador Program, which she has participated in for several years. Prior to joining NDSS, Michelle served on the board of her local Down syndrome organization and helped plan her local Buddy Walk. Michelle has a bachelor’s degree in Athletic Training from Neumann University, a master’s degree in Multicultural Education from Eastern University, and a certification in Physical Education and Health.
VP of Development
Dan Vosnos
Email DanDan Vosnos leads and supports the organization's development efforts, focusing on bringing individuals, foundations, corporations, and nonprofits together in partnership. His involvement in the Down syndrome community began as an impact leader and advocate after the birth of his son, Ellis, who has Down syndrome. Before taking on roles in the nonprofit sector, Dan served as a High School Administrator and Athletic Director in Chicagoland for over twenty years. He holds a Bachelor of Arts in History/Secondary Education from Illinois Wesleyan University, where he was a four-year letterman in their collegiate football program. After completing his undergraduate degree, Dan earned his Master of Arts in School Counseling from Northeastern Illinois University, and a Master of Arts in Educational Leadership from National Louis University.
Programs Associate
Charlotte Woodward
Email CharlotteCharlotte is the Programs Associate for the National Down Syndrome Society (NDSS) where she supports the development of resources and policy initiatives. Charlotte was born with Down syndrome, as well as a heart condition, and had four open-heart surgeries when she was young. She is one of the very few people born with Down syndrome to receive a life-saving heart transplant, and she regularly shares her story to educate and advocate for legislation that benefits the Down syndrome and disability communities. Charlotte holds an associate degree from Northern Virginia Community College and recently graduated Summa Cum Laude from George Mason University with a bachelor’s degree in sociology with a concentration in inequality and social change.