NDSS Fuses Advocacy and Research in Landmark Board Expansion

WASHINGTON D.C. – December 05, 2025 – The National Down Syndrome Society (NDSS) has announced a significant evolution in its leadership, appointing six new members to its Board of Directors. This move, which expands the board to 25 members, is a direct result of the organization's strategic merger with the LuMind IDSC Foundation, which became effective on October 1. The appointments represent a deliberate fusion of NDSS’s formidable advocacy and community-building legacy with LuMind IDSC’s deep expertise in accelerating scientific research, setting the stage for a transformative new chapter for the Down syndrome community.

All six new members—Anthony Providenti, Hector Guinness, LaSandra Brill, Karen Gaffney, Beverly Paperiello, and Ludivine Van der Heyden—are former board members of LuMind IDSC, bringing with them a wealth of experience and a continued commitment to the mission. Their integration is a cornerstone of the post-merger strategy, designed to create a unified powerhouse capable of tackling the community's most pressing challenges from every angle.

“I am excited to continue advancing our mission and evolving our research initiatives alongside new and continuing members of the NDSS Board of Directors,” said NDSS CEO Kandi Pickard in a statement. “Together, this incredible group will continue to expand our work and create a lasting impact on the Down syndrome community.”

A Strategic Union of Advocacy and Research

The merger and subsequent board expansion are more than just a structural change; they represent the creation of a single, comprehensive entity poised to accelerate progress. For decades, NDSS has been the leading human rights organization for individuals with Down syndrome, renowned for its policy work and iconic community programs like the National Buddy Walk®. The LuMind IDSC Foundation, meanwhile, carved out a distinct legacy as a primary engine for research, particularly focused on improving cognition and understanding the high prevalence of Alzheimer's disease in the Down syndrome population.

Since its inception, LuMind IDSC and its predecessors raised over $85 million to fund critical research, establishing a robust Down Syndrome Clinical Trials Network across the country. This focus is vital, given that individuals with Down syndrome have a 90% lifetime risk of developing Alzheimer's, often with a much earlier onset. The merger formally establishes a new "Research" pillar within NDSS, bringing this crucial work back to the organization's core and creating a direct pipeline from scientific discovery to community resources and policy advocacy.

By combining NDSS's grassroots network and policy influence with LuMind IDSC’s clinical research infrastructure, the unified organization aims to bridge the gap between the lab and lived experience. The integration will see LuMind’s extensive digital resource library and family support programs folded into NDSS’s offerings, creating a one-stop-shop for families seeking everything from the latest research updates to local support networks.

Forging a New Era of Inclusive Leadership

Perhaps the most powerful signal of the organization's future direction is the appointment of Karen Gaffney to the board. An author, accomplished long-distance swimmer, and President of the Karen Gaffney Foundation, she is also the first person with Down syndrome to have delivered a TED Talk. Her appointment brings invaluable lived experience and authentic representation into the highest level of the organization's governance.

Gaffney is a celebrated advocate for full inclusion, challenging outdated perceptions of what individuals with Down syndrome can achieve. In 2001, she successfully swam the English Channel as part of a relay team, and in 2013, she received an honorary Doctor of Humane Letters from the University of Portland. Beyond her public advocacy, she works full-time at a law firm in Portland, Oregon. Her presence on the board ensures that the voice of the community NDSS serves is not just heard but is integral to the decision-making process, from program development to strategic planning.

Her long-standing advocacy for removing barriers to participation in Alzheimer's drug trials for people with Down syndrome aligns perfectly with the new, research-heavy focus of the expanded organization. This move underscores a fundamental shift toward ensuring that leadership reflects the community it represents, a principle critical for driving meaningful and effective change.

Infusing Corporate Acumen into a Social Mission

The new board members also bring a formidable array of professional expertise from the highest echelons of business, law, and technology. This infusion of corporate and legal acumen is poised to enhance NDSS's operational efficiency, fundraising capabilities, and strategic impact.

Anthony Providenti, the former Board Chair of LuMind IDSC, has a background as a senior executive with deep experience in mergers and acquisitions and business development at global corporations like Mars, Incorporated. As a licensed lawyer with an adult son who has Down syndrome, his professional skills are matched by a profound personal commitment.

He is joined by Hector Guinness, a partner at the private equity firm Hg, who brings sophisticated financial strategy to the table. LaSandra Brill, Vice President of Global Digital Marketing at AI-leader NVIDIA, offers world-class expertise in digital outreach and communication, crucial for shifting public perception and engaging a global community. Beverly Paperiello, a drug development consultant with over 30 years in the pharmaceutical industry, provides direct, hands-on knowledge that will guide the organization's expanded research pillar. Finally, Ludivine Van der Heyden, an attorney managing a pro bono immigration practice and representing families in special education litigation, strengthens NDSS’s core advocacy mission.

This blend of top-tier professional talent and personal dedication signals a strategic move to run a social mission with business-level rigor, maximizing the impact of every dollar raised and every policy pursued.

Charting the Course for 2026 and Beyond

With its new leadership structure in place, the expanded 25-member board will now turn its attention to developing the organization's next three-year strategic plan, set to launch in mid-2026. The combined strengths of the merged entity and the diverse expertise of the new board point toward an ambitious, multi-faceted agenda.

An intensified focus on health equity and scientific advancement is all but certain. The new NDSS is now perfectly positioned to engage with major national initiatives, such as the National Institutes of Health's (NIH) forthcoming $20 million program to track individuals with Down syndrome from birth to adulthood. The organization's goal will be to not only support such research but to help translate its findings into tangible treatments and improved standards of care.

Advocacy efforts are also expected to become more sophisticated, leveraging the board's legal and corporate influence to push for inclusive public policy in healthcare, education, and employment. With a broader geographic footprint, particularly on the West Coast, the organization is also poised to strengthen its community engagement and support systems nationwide. This new chapter for NDSS represents a calculated and powerful convergence of research, advocacy, and inclusive leadership, promising to accelerate progress and create a world where all individuals with Down syndrome can thrive.