LuMind IDSC Foundation

Research & Resources for the Down syndrome community

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

Learn how to support this organization

GuideStar Charity Check

EIN: 37-1483975

Contributions tax deductible
as of November 2025

IRS BMF 509(a)(1)
as of November 14, 2025

View summary

Charity Check report

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

Subject area info

Down syndrome

Population served info

People with psychosocial disabilities

People with intellectual disabilities

Adults

Children and youth

NTEE code info

Down Syndrome (G25)

IRS subsection

501(c)(3) Public Charity

IRS filing requirement

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

Tax forms

Show Forms 990

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

Research: LIFE-DSR

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

Research Consortium

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.

Community Program: myDSC

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

Community Program: Annual Family Weekend

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.

Community Program: LuMind IDSC Webinar Series

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.

Community Program: Facebook Support Groups

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.

What is the organization aiming to accomplish?

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.

What are the organization's key strategies for making this happen?

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

What are the organization's capabilities for doing this?

What have they accomplished so far and what's next?

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.

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

Fiscal year: Oct 01 - Sep 30

Financial documents

Yes, financials were audited by an independent accountant.

Revenue vs. expenses: breakdown

SOURCE: IRS Form 990

NET GAIN/LOSS: in

Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2024

SOURCE: IRS Form 990

3.33

Average of 1.09 over 10 years

Months of cash in 2024

SOURCE: IRS Form 990

1.8

Average of 4.3 over 10 years

Fringe rate in 2024

SOURCE: IRS Form 990

18%

Average of 18% over 10 years

Funding sources

Source: IRS Form 990

Assets & liabilities

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

Digitizing IRS form 990 data

LuMind IDSC Foundation

Revenue & expenses

Fiscal Year: Oct 01 - Sep 30

SOURCE: IRS Form 990 info

Fiscal year ending: Download Data

Revenue
Contributions	$1,335,823
Government Grants	$0
Program Services	$0
Investments	$15,256
Special Events	$219,396
Sales	$0
Other	$0
Total Revenue	$1,570,475

Expenses
Program Services	$1,827,599
Administration	$93,467
Fundraising	$213,300
Total Expenses	$2,134,366
Net Gain/Loss	($563,891)

Functional expenses
Accounting Fees	$0
Advertising & Promotion	$0
Information Technology Expenses	$0
Insurance Expenses	$2,415
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$0
Pension Plan Contributions	$0
Professional Fundraising Expenses	$0

Revenue
Contributions	$1,147,144
Government Grants	$0
Program Services	$0
Investments	$4,852
Special Events	$368,285
Sales	$0
Other	$0
Total Revenue	$1,520,281

Expenses
Program Services	$1,654,790
Administration	$109,929
Fundraising	$252,365
Total Expenses	$2,017,084
Net Gain/Loss	($496,803)

Functional expenses
Accounting Fees	$4,450
Advertising & Promotion	$61,298
Information Technology Expenses	$2,013
Insurance Expenses	$2,358
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$0
Pension Plan Contributions	$0
Professional Fundraising Expenses	$91,044

Revenue
Contributions	$1,274,822
Government Grants	$0
Program Services	$0
Investments	$2,191
Special Events	$415,936
Sales	$0
Other	$0
Total Revenue	$1,692,949

Expenses
Program Services	$1,458,672
Administration	$345,161
Fundraising	$187,223
Total Expenses	$1,991,056
Net Gain/Loss	($298,107)

Functional expenses
Accounting Fees	$0
Advertising & Promotion	$129,963
Information Technology Expenses	$3,513
Insurance Expenses	$2,215
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$0
Pension Plan Contributions	$0
Professional Fundraising Expenses	$0

Revenue
Contributions	$1,400,378
Government Grants	$0
Program Services	$0
Investments	$1,633
Special Events	$458,326
Sales	$0
Other	$568
Total Revenue	$1,860,905

Expenses
Program Services	$1,284,328
Administration	$160,030
Fundraising	$140,323
Total Expenses	$1,584,681
Net Gain/Loss	$276,224

Functional expenses
Accounting Fees	$0
Advertising & Promotion	$21,569
Information Technology Expenses	$13,160
Insurance Expenses	$2,965
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$0
Pension Plan Contributions	$0
Professional Fundraising Expenses	$0

Revenue
Contributions	$1,539,394
Government Grants	$0
Program Services	$0
Investments	$1,293
Special Events	$396,092
Sales	$0
Other	$1,036
Total Revenue	$1,937,815

Expenses
Program Services	$1,404,982
Administration	$293,752
Fundraising	$58,633
Total Expenses	$1,757,367
Net Gain/Loss	$180,448

Functional expenses
Accounting Fees	$25,259
Advertising & Promotion	$56,765
Information Technology Expenses	$6,511
Insurance Expenses	$7,801
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$0
Pension Plan Contributions	$0
Professional Fundraising Expenses	$0

Revenue
Contributions	$1,530,791
Government Grants	$0
Program Services	$0
Investments	$1,793
Special Events	$670,910
Sales	$0
Other	$0
Total Revenue	$2,203,494

Expenses
Program Services	$1,802,376
Administration	$34,040
Fundraising	$169,764
Total Expenses	$2,006,180
Net Gain/Loss	$197,314

Functional expenses
Accounting Fees	$27,607
Advertising & Promotion	$70,811
Information Technology Expenses	$16,836
Insurance Expenses	$15,944
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$2,780
Pension Plan Contributions	$0
Professional Fundraising Expenses	$0

Revenue
Contributions	$1,423,052
Government Grants	$0
Program Services	$0
Investments	$306
Special Events	$804,576
Sales	$0
Other	$247,550
Total Revenue	$2,475,484

Expenses
Program Services	$2,078,837
Administration	$98,274
Fundraising	$169,862
Total Expenses	$2,346,973
Net Gain/Loss	$128,511

Functional expenses
Accounting Fees	$29,638
Advertising & Promotion	$94,600
Information Technology Expenses	$13,552
Insurance Expenses	$12,805
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$6,240
Pension Plan Contributions	$0
Professional Fundraising Expenses	$0

Revenue
Contributions	$1,576,150
Government Grants	$0
Program Services	$0
Investments	$153
Special Events	$933,373
Sales	$0
Other	$0
Total Revenue	$2,509,676

Expenses
Program Services	$2,283,536
Administration	$44,919
Fundraising	$256,431
Total Expenses	$2,584,886
Net Gain/Loss	($75,210)

Functional expenses
Accounting Fees	$24,677
Advertising & Promotion	$60,372
Information Technology Expenses	$7,721
Insurance Expenses	$14,324
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$7,794
Pension Plan Contributions	$0
Professional Fundraising Expenses	$0

Revenue
Contributions	$1,698,058
Government Grants	$0
Program Services	$0
Investments	$1,241
Special Events	$539,322
Sales	$0
Other	$10
Total Revenue	$2,238,631

Expenses
Program Services	$2,340,199
Administration	$163,630
Fundraising	$317,970
Total Expenses	$2,821,799
Net Gain/Loss	($583,168)

Functional expenses
Accounting Fees	$25,200
Advertising & Promotion	$41,971
Information Technology Expenses	$6,899
Insurance Expenses	$4,850
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$6,345
Pension Plan Contributions	$852
Professional Fundraising Expenses	$0

Revenue
Contributions	$3,261,080
Government Grants	$0
Program Services	$0
Investments	$601
Special Events	$342,637
Sales	$0
Other	$240
Total Revenue	$3,604,558

Expenses
Program Services	$2,040,992
Administration	$194,998
Fundraising	$361,439
Total Expenses	$2,597,429
Net Gain/Loss	$1,007,129

Functional expenses
Accounting Fees	$0
Advertising & Promotion	$49,947
Information Technology Expenses	$5,435
Insurance Expenses	$7,247
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$81,533
Pension Plan Contributions	$7,232
Professional Fundraising Expenses	$0

Revenue
Contributions	$3,589,169
Government Grants	$0
Program Services	$0
Investments	$0
Special Events	$222,066
Sales	$0
Other	$21,292
Total Revenue	$3,832,527

Expenses
Program Services	$2,753,711
Administration	$216,431
Fundraising	$515,136
Total Expenses	$3,485,278
Net Gain/Loss	$347,249

Functional expenses
Accounting Fees	$46,588
Advertising & Promotion	$10,686
Information Technology Expenses	$74,771
Insurance Expenses	$8,456
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$3,320
Pension Plan Contributions	$19,711
Professional Fundraising Expenses	$0

Revenue
Contributions	$1,577,945
Government Grants	$0
Program Services	$0
Investments	$0
Special Events	$258,541
Sales	$0
Other	$27,345
Total Revenue	$1,863,831

Expenses
Program Services	$1,926,934
Administration	$222,542
Fundraising	$421,316
Total Expenses	$2,570,792
Net Gain/Loss	($706,961)

Functional expenses
Accounting Fees	$17,540
Advertising & Promotion	$5,068
Information Technology Expenses	$105,211
Insurance Expenses	($6,095)
Interest Expenses	$13,833
Investment Management Fees	$0
Legal Fees	$10,489
Pension Plan Contributions	$36,954
Professional Fundraising Expenses	$0

Revenue
Contributions	$4,788,334
Government Grants	$324,071
Program Services	$0
Investments	$1,503
Special Events	$153,307
Sales	$0
Other	$0
Total Revenue	$5,267,215

Expenses
Program Services	$2,537,107
Administration	$360,178
Fundraising	$470,641
Total Expenses	$3,367,926
Net Gain/Loss	$1,899,289

Functional expenses
Accounting Fees	$86,538
Advertising & Promotion	$22,218
Information Technology Expenses	$118,316
Insurance Expenses	$27,724
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$89,251
Pension Plan Contributions	$39,516
Professional Fundraising Expenses	$0

Revenue
Contributions	$2,544,017
Government Grants	$0
Program Services	$0
Investments	$2,465
Special Events	$195,882
Sales	$0
Other	$0
Total Revenue	$2,742,364

Expenses
Program Services	$3,598,866
Administration	$523,942
Fundraising	$604,049
Total Expenses	$4,726,857
Net Gain/Loss	($1,984,493)

Functional expenses
Accounting Fees	$144,138
Advertising & Promotion	$8,832
Information Technology Expenses	$138,071
Insurance Expenses	$37,278
Interest Expenses	$3,698
Investment Management Fees	$0
Legal Fees	$31,200
Pension Plan Contributions	$46,019
Professional Fundraising Expenses	$0

Revenue
Contributions	$2,844,090
Government Grants	$346,974
Program Services	$0
Investments	$14,309
Special Events	($46,621)
Sales	$0
Other	$792
Total Revenue	$3,159,544

Expenses
Program Services	$3,025,943
Administration	$427,689
Fundraising	$525,891
Total Expenses	$3,979,523
Net Gain/Loss	($819,979)

Functional expenses
Accounting Fees	$142,272
Advertising & Promotion	$17,390
Information Technology Expenses	$60,937
Insurance Expenses	$19,387
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$34,120
Pension Plan Contributions	$41,790
Professional Fundraising Expenses	$0

Revenue
Contributions	$4,044,988
Government Grants	$0
Program Services	$0
Investments	$12,607
Special Events	($34,467)
Sales	$0
Other	$16,199
Total Revenue	$4,039,327

Expenses
Program Services	$3,174,318
Administration	$617,663
Fundraising	$199,725
Total Expenses	$3,991,706
Net Gain/Loss	$47,621

Functional expenses
Accounting Fees	$131,671
Advertising & Promotion	$42,424
Information Technology Expenses	$109,028
Insurance Expenses	$13,560
Interest Expenses	$0
Investment Management Fees	$0
Legal Fees	$19,925
Pension Plan Contributions	$2,939
Professional Fundraising Expenses	$0

LuMind IDSC Foundation

Balance sheet

Fiscal Year: Oct 01 - Sep 30

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: Download Data

Assets	Oct 01, 2008	Sep 30, 2009	Change
Contributions	$1,335,823
Cash & Equivalents	$1,241,180	$1,121,954	($119,226)
Accounts Receivable	$0	$0	$0
Pledges & Grants Receivable	$751,475	$703,050	($48,425)
Receivable, Other	$0	$0	$0
Inventories for Sale or Use	$0	$0	$0
Investment, Securities	$0	$0	$0
Investment, Other	$0	$0	$0
Fixed Assets (LBE - Depreciation)	$2,372	$1,845	($527)
Other	$22,039	$11,302	($10,737)
Total Assets	$2,017,066	$1,838,151	($178,915)

Liabilities	Oct 01, 2008	Sep 30, 2009	Change
Accounts Payable	$546,321	$14,864	($531,457)
Grants Payable	$0	$900,000	$900,000
Deferred Revenue	$42,321	$58,754	$16,433
Loans and Notes	$0	$0	$0
Tax-Exempt Bond Liabilities	$0	$0	$0
Other	$0	$0	$0
Total Liabilities	$588,642	$973,618	$384,976

LuMind IDSC Foundation

Financial trends analysis Glossary & formula definitions

Fiscal Year: Oct 01 - Sep 30

SOURCE: IRS Form 990 info

This snapshot of LuMind IDSC Foundation’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

Created in partnership with

Fiscal year: Oct 01 - Sep 30 View full report Download data

Business model indicators

Profitability	2020	2021	2022	2023	2024
Unrestricted surplus (deficit) before depreciation	-$25,536	$780,405	-$1,189,068	$470,009	$875,922
As % of expenses	-1.0%	23.6%	-25.5%	12.3%	22.9%
Unrestricted surplus (deficit) after depreciation	-$35,962	$714,823	-$1,256,396	$307,692	$702,424
As % of expenses	-1.4%	21.2%	-26.6%	7.7%	17.6%

Revenue composition
Total revenue (unrestricted & restricted)	$1,863,831	$5,267,215	$2,742,364	$3,159,544	$4,039,327
Total revenue, % change over prior year	-51.4%	182.6%	-47.9%	15.2%	27.8%
Program services revenue	0.0%	0.0%	0.0%	0.0%	0.0%
Membership dues	0.0%	0.0%	0.0%	0.0%	0.0%
Investment income	0.0%	0.0%	0.1%	0.5%	0.3%
Government grants	0.0%	6.2%	0.0%	11.0%	0.0%
All other grants and contributions	98.5%	93.8%	99.9%	88.5%	99.3%
Other revenue	1.5%	0.0%	0.0%	0.0%	0.4%

Expense composition
Total expenses before depreciation	$2,560,366	$3,302,344	$4,659,529	$3,817,206	$3,818,208
Total expenses, % change over prior year	-26.5%	29.0%	41.1%	-18.1%	0.0%
Personnel	37.3%	38.7%	46.4%	44.8%	52.3%
Professional fees	11.8%	6.2%	6.9%	13.3%	6.6%
Occupancy	2.1%	1.4%	1.2%	1.5%	0.4%
Interest	0.5%	0.0%	0.1%	0.0%	0.0%
Pass-through	39.9%	45.6%	9.6%	0.0%	0.0%
All other expenses	8.4%	8.0%	35.8%	40.4%	40.7%

Full cost components (estimated)	2020	2021	2022	2023	2024
Total expenses (after depreciation)	$2,570,792	$3,367,926	$4,726,857	$3,979,523	$3,991,706
One month of savings	$213,364	$275,195	$388,294	$318,101	$318,184
Debt principal payment	$0	$0	$0	$0	$0
Fixed asset additions	$230,923	$0	$272,265	$0	$0
Total full costs (estimated)	$3,015,079	$3,643,121	$5,387,416	$4,297,624	$4,309,890

Capital structure indicators

Liquidity	2020	2021	2022	2023	2024
Months of cash	1.3	5.6	2.4	2.2	1.8
Months of cash and investments	1.3	5.6	2.4	2.2	1.8
Months of estimated liquid unrestricted net assets	-0.6	2.2	-2.2	-1.4	1.3

Balance sheet composition	2020	2021	2022	2023	2024
Cash	$283,239	$1,551,887	$943,623	$707,582	$580,373
Investments	$0	$0	$0	$0	$0
Receivables	$1,826,302	$2,655,533	$754,462	$139,169	$74,385
Gross land, buildings, equipment (LBE)	$259,962	$304,726	$576,991	$648,483	$648,483
Accumulated depreciation (as a % of LBE)	8.9%	29.1%	27.0%	49.1%	75.8%
Liabilities (as a % of assets)	65.8%	38.9%	33.2%	50.2%	20.5%
Unrestricted net assets	$117,205	$832,028	-$424,368	-$116,676	$585,748
Temporarily restricted net assets	N/A	N/A	N/A	N/A	N/A
Permanently restricted net assets	N/A	N/A	N/A	N/A	N/A
Total restricted net assets	$723,951	$1,908,417	$1,870,836	$743,165	$88,363
Total net assets	$841,156	$2,740,445	$1,446,468	$626,489	$674,111

Key data checks

Key data checks	2020	2021	2022	2023	2024
Material data errors	No	No	No	No	No

Operations

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

Documents

Letter of Determination

Form 1023/1024 is not available for this organization

President and CEO

Hampus Hillerstrom

LinkedIn profile

Hampus Hillerstrom is President and CEO of LuMind IDSC Foundation since September 2017, after serving on the board of directors for three years. Previously, he cofounded Proclara Biosciences in 2007, a company developing a novel approach for treating Alzheimers, Parkinsons and other protein misfolding diseases. Previously, he spent three years as an associate at 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 decisionmaking leading to Phase III clinical trials. Hampus holds a Masters in Economics and Finance from the University of St. Gallen (Switzerland), an MBA from Harvard Business School, and an MSc in Health Sciences and Technology from MIT/Harvard Medical School (HST). Hampus and his wife, Lianor are raising sons Oskar, the oldest who has Down Syndrome, and his partner in mischief Sebastian.

Chief Scientific Officer

Richard Fisher

LinkedIn profile

As the Chief Scientific Officer, Dr. Fisher directs scientific initiatives for LuMind IDSC. Recently, Dr. Fisher was the Chief Scientific Officer at Vigil Neuroscience, where he helped build the microglia-focused biology team. Previously, Dr. Fisher served in a senior scientific leadership role for Flagship Pioneering FL60 (now Vesalius Therapeutics); where he worked with the founders in building a stem cell-based biology team. Dr. Fisher served as the Chief Scientific Officer at Proclara Bioscience, where he helped establish the scientific team. He was a key member in the development of a novel approach, called GAIM, to lower amyloid loads in Alzheimers disease, culminating in the clinical trials of two novel drug candidates. Education: Post-doctoral fellowship: University of Chicago (Biophysics) PhD: University of Iowa College of Medicine (Microbiology/Molecular Genetics) BA: University of Iowa (Zoology)

Number of employees

Source: IRS Form 990

LuMind IDSC Foundation

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation

Other

Show data for fiscal year

Compensation data

Download up to 5 most recent years of officer and director compensation data for this organization

LuMind IDSC Foundation

Highest paid employees

SOURCE: IRS Form 990

Compensation

Other

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Compensation data

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LuMind IDSC Foundation

Board of directors
as of 5/19/2025

SOURCE: Self-reported by organization

Board of directors data

Download the most recent year of board of directors data for this 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

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

Contractors

Fiscal year ending

There are no fundraisers recorded for this organization.

LuMind IDSC Foundation

Research & Resources for the Down syndrome community

Mission

Is this your nonprofit?

Programs and results

What we aim to solve

Our programs

Research: DS-CTN Down syndrome clinical trials network

Research: LIFE-DSR

Research Consortium

Community Program: myDSC

Community Program: Annual Family Weekend

Community Program: LuMind IDSC Webinar Series

Community Program: Facebook Support Groups

Where we work

Goals & Strategy

Charting impact

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

What have they accomplished so far and what's next?

How we listen

Financials

Financial documents

Revenue vs. expenses: breakdown

Liquidity in 2024 info

3.33

Months of cash in 2024 info

1.8

Fringe rate in 2024 info

18%

Funding sources info

Assets & liabilities info

Financial data

Digitizing IRS form 990 data

LuMind IDSC Foundation

LuMind IDSC Foundation

LuMind IDSC Foundation

Business model indicators

Capital structure indicators

Key data checks

Operations

Documents

President and CEO

Hampus Hillerstrom

Chief Scientific Officer

Richard Fisher

Number of employees

LuMind IDSC Foundation

Compensation data

LuMind IDSC Foundation

Compensation data

LuMind IDSC Foundation

Board of directors data

Board leadership practices

Board orientation and education

CEO oversight

Ethics and transparency

Board composition

Board performance

Organizational demographics

Leadership

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Contractors

Liquidity in 2024

Months of cash in 2024

Fringe rate in 2024

Funding sources

Assets & liabilities