Exploring a hopeful new season of Down syndrome research
Unable to attend, make a gift today in support of our mission.
Refreshments & hors d’oeuvres will be served
Adults with Down syndrome face an extraordinary risk of Alzheimer’s disease—yet for decades, they’ve been overlooked in research. Today, that’s changing. We are entering a new era of possibility—one that could transform what we know, how we treat, and even how we prevent this devastating disease. Discover why this pivotal moment may present a unique opportunity to combat a debilitating disease that is a risk for over 90% of the Down syndrome community.
About our Hosts
About Hector & Lucy Guinness
Hector is a partner with Hg Capital, where he focuses on software investments. He moved to the US in 2019 to help establish Hg’s US presence, and now lives in New York with his wife, Lucy, and their three children- Jemima, Honor and Alfie, their eldest, who has Down Syndrome. Hector and Lucy previously lived in Mumbai and London, and both graduated from the University of Oxford.
About Ludivine Van der Heyden & Augusto Ruiloba
Ludivine is an attorney managing Cleary Gottlieb Steen & Hamilton LLP’s pro bono immigration practice. She also represents pro bono families in special education litigation in New York. Ludivine and her husband Augusto met during their LL.M year at Columbia Law School. Augusto is a partner at A&O Shearman specializing in project finance. They live in Brooklyn Heights, NY with their three children and their youngest daughter, Almudena, has Down syndrome. Ludivine joined the Board of LuMind IDSC in early 2024.
Hampus Hillerstrom
CEO, LuMind IDSC Foundation
Hampus co‐founded biotech, Proclara Biosciences, in 2007, and served as Executive Vice President and Chief Financial Officer. Proclara focused on developing novel treatments for Alzheimer’s, Parkinson’s and other protein misfolding diseases. Previously, he spent three years as an associate at the leading European biotech venture capital firm, HealthCap, where he participated in a large number of investment transactions including several IPOs. Hampus also spearheaded a project at AstraZeneca to evaluate decision‐making leading to large clinical trials and worked on the pharmaceutical industry at investment bank Lazard.
As CEO of LuMind IDSC, Hampus provides the vision and direction for the organization, and supports the talented and dedicated team as they work to serve the Down syndrome community.
Hampus is familiar with disability and special needs since he’s had an arm prosthesis since birth, which never stopped him from skiing and golfing! Hampus and his wife, Lianor, are raising sons Oskar and Sebastian. Oskar, who has Down Syndrome, helps Hampus experience LuMind IDSC’s mission every day.
Karen Gaffney
President of the Karen Gaffney Foundation
Karen describes her life as a “Journey of Hope” while she calls attention to the accomplishments of people living with Down syndrome all over the world. As a global advocate, public speaker, athlete, and foundation founder, Karen is dedicated to advancing inclusion for individuals with intellectual disabilities in schools, workplaces, and communities. Her organization is funded through speaking engagements, workshops, and donations. In addition to running a non-profit, she works full-time at a law firm. Karen earned her high school diploma from St. Mary’s Academy in Portland, Oregon, followed by an Associate of Science degree from Portland Community College.
Her message—that Down syndrome is a life meant to be lived—has reached audiences around the world. A passionate advocate for inclusive education and meaningful employment, she shares firsthand experiences and strategies that resonate with job seekers, hiring managers, and educators alike. A lifelong athlete and open-water swimmer, she begins most days with a two-mile swim. She’s completed major fundraising swims including a relay across the English Channel, a 9-mile solo swim across Lake Tahoe, and events in the Columbia River, Lake Champlain, and beyond. She was featured in the documentary Crossing Tahoe: A Swimmer’s Dream.
Karen was the first person with Down syndrome to deliver a TED Talk at one of the world’s largest TEDx stages. Today, she’s an outspoken voice in the fight against Alzheimer’s, advocating for inclusion in clinical trials.
Sharon Krinsky-McHale, Ph.D.
Head, Laboratory of Cognition & Development at NY State Institute for Basic Research in Development Disabilities
Dr. Krinsky-McHale has been a research psychologist with the New York State Institute for Basic Research in Developmental Disabilities since 1995, and is the head of the Laboratory of Cognition and Development. She conducts research on cognitive functioning and developmental processes in adults with Down syndrome and in individuals with other forms of intellectual disability (e.g., Williams syndrome). Her laboratory is also examining the neuropsychiatric symptoms that are associated with mild cognitive impairment/Alzheimer’s disease and how these change during disease progression. Dr. Krinsky-McHale has unique expertise in the areas of cognition, visual perception and neuropsychiatric symptomatology, and have been at the forefront of research focused on recognition of the earliest indicators of dementia in adults with Down syndrome.
Moderator: Jim Hendrix, Ph.D.
Executive Director for US Medical Affairs, Eli Lilly and Company
Jim Hendrix received his Ph.D. and a postdoctoral fellowship in organic chemistry from Colorado State U. He started his pharmaceutical career as a medicinal chemist at Hoechst-Roussel (later Sanofi-Aventis) working in CNS drug discovery. Jim worked for the company for 18 years rising to the level of Senior Director, U.S. Site Head for CNS Research. Jim also spent 2 years in biotech with various companies before joining the Alzheimer’s Association in Chicago as Director of Global Science Initiatives. In 2018, Jim became the Chief Scientific Officer for LuMind IDSC, a non-profit focused on Down syndrome research. In April of 2022, Jim joined Eli Lilly and Company as Executive Director for US Medical Affairs working in the Neuroscience Business Unit acting as a clinical research scientist.
About Down syndrome and Alzheimer's disease
Recent advancements in Alzheimer's research
Understanding Key Differences Among Down Syndrome related Alzheimer’s Disease Clinical Trials
Key Updates for the Down Syndrome Community: 5 Takeaways About Accessing the new Alzheimer’s Drugs
Alzheimer’s Disease and Down Syndrome
Webinar: Alzheimer’s Disease in People with Down Syndrome: What We Know and What We Can Do About It
How has LuMind IDSC responded?
People With Down Syndrome Deserve Access to Alzheimer’s Treatment (Boston Globe, Oct 2023)
Barriers to Latest Alzheimer’s Treatments for Down Syndrome Community (Reuters, Nov 2023)
Expert Panel Addresses Inequitable Access to Latest Alzheimer’s Treatments
Alzheimer’s Drugs Are Here. But for the Down Syndrome Community It’s Still the 1980s .
LuMind IDSC Launches Key Research and Awareness Activities with Support from Eli Lilly and Company
“For People With Down Syndrome, A Longer Life, But Under A Cloud” by the Washington Post
Sign The Petition: Equity For Our Community: Today and Tomorrow
