GOLD2025

LuMind IDSC Foundation

Research & Resources for the Down syndrome community

Woburn, MA   |  http://www.lumindidsc.org

Learn how to support this organization

Mission

LuMind IDSC Foundation accelerates research to increase availability of therapeutic, diagnostic, and medical care options and we empower families through education, connections, and support.

Ruling year info

2004

President and CEO

Hampus Hillerstrom

Chief Scientific Officer

Richard Fisher

Main address

110 Winn St Ste 105

Woburn, MA 01801-2800 USA

Show more contact info

Formerly known as

Down Syndrome Research and Treatment Foundation

Research Down Syndrome

LuMind Research Down Syndrome Foundation

EIN

37-1483975

NTEE code info

Down Syndrome (G25)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2024, 2023 and 2022.
Register now

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

We’re focused on exciting research targeting the root cause with the objective of improving health and independence for our loved ones throughout their lifetimes. Our four priorities are: Preventing Alzheimer’s Disease, Increase Independence (including Cognition, Sleep, Behavior, Speech, and Regression), Develop Gene Therapies and Speed up Access to Treatments

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Research: DS-CTN Down syndrome clinical trials network

The Down Syndrome Clinical Trials Network was built to conduct large-scale, multi-site trials with experienced clinicians who are experts at providing medical care for individuals with Down syndrome. Founded in 2019, today the DS-CTN is accelerating research into the unmet medical needs of people with Down syndrome. 14 DS-CTN Sites in 10 States

Population(s) Served
Adults
People with intellectual disabilities
People with psychosocial disabilities

The Longitudinal Investigation for the Enhancement of Down Syndrome Research (LIFE-DSR) is a multi-year, coordinated research study by medical and academic professionals to track and analyze the medical and physical data of 270 adults with Down syndrome. LIFE-DSR is an observational study. Teams in hospitals and universities collect data points (for example, height and weight, sleeping patterns, and blood samples) gathered over time to help researchers form a clearer picture of the physiology of people with DS

Population(s) Served

Our Consortium bridges industry and Down syndrome experts to build a structured and focused translational approach to Down syndrome-related research. We create and drive high-impact research projects that identify and develop pre-clinical tools and clinical outcome measures to accelerate the pace of research efforts in the DS community.

Population(s) Served

myDSC is a free, online library designed specifically for the Down syndrome community. Curated by trusted professionals, myDSC is a comprehensive directory of evidence-based resources and useful tools for individuals with Down syndrome and their families. The library provides members with reliable, up-to-date information regarding: health and wellness, lifestyle, education, medical and research information.

Population(s) Served
People with intellectual disabilities
People with psychosocial disabilities
Adults

LuMind IDSC Family Weekend is the largest event of its kind for individuals with Down syndrome and their families. The event gathers more than 4,000 people at Great Wolf Lodge locations all across the country and Canada.

Population(s) Served

LuMind IDSC frequently hosts free webinars to keep the Down syndrome community and the research community up-to-date on the latest in Down syndrome research, Down syndrome resources, medical conditions and treatments, caregiver concerns, and mental health.

Population(s) Served

We help connect people with other individuals with Down syndrome and their families by joining our Facebook groups. Facebook groups include: Adoptive Families Support, Babies and Toddlers, Conexion en Espanol, Grandparents, Prenatal Diagnosis and many others.

Population(s) Served
Adults
People with intellectual disabilities
People with psychosocial disabilities

Where we work

  • Canada

  • United States

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

LuMind IDSC envisions a world where every person with Down syndrome thrives with improved health, independence, and opportunities to reach their fullest potential. We accelerate research to increase the availability of therapeutic, diagnostic, and medical care options and we empower families through education, connections, and support.

Down syndrome research offers opportunities for people of all ages with Down syndrome. Your support is essential to finding safe, effective drugs and interventions to improve health and independence. We empower families through education, connections and support. Your gift is crucial to furthering these breakthroughs

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We act on the feedback we receive, We share the feedback we received with the people we serve

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback

Financials

LuMind IDSC Foundation
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more about GuideStar Pro.

Operations

The people, governance practices, and partners that make the organization tick.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

LuMind IDSC Foundation

Board of directors
as of 5/19/2025
SOURCE: Self-reported by organization

Anthony Providenti

Beverly Paperiello

Chris Senna DIRECTOR

Claudia Moreira

Das Narayandas

Giri Krishnamoorthy

Hector Guinness

Jeff Strobel

Karen Gaffney

Lasandra Brill DIRECTOR

Ludevine Van Der Heyden

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? yes

Organizational demographics

info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
Decline to state
Sexual orientation
Decline to state
Disability status
Decline to state

The organization's co-leader identifies as:

Race & ethnicity
Decline to state
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability