Civic Intelligence

National Ataxia Foundation Incorporated

EIN 41-0832903 • 501(c)3 • Minneapolis, MN

Profile

The National Ataxia Foundation's mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.

PO Box 27986Minneapolis, MN 55427

ataxia.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

47th percentile

0.10x

Higher debt load relative to assets than 47% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Liabilities / Revenue

33rd percentile

0.07x

Higher debt load relative to revenue than 33% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Net Margin

61st percentile

9.7%

Higher net margin than 61% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Top Officer Pay

82nd percentile

$248,549

Higher top officer pay than 82% of similar nonprofits.

Top officer pay equals 3.6% of source-year revenue.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Asset Growth

77th percentile

16%

Faster asset growth than 77% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Annualized from 2023 to 2024

Revenue Growth

89th percentile

75%

Faster revenue growth than 89% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets47th percentile

Assets

Up

$4,791,426

Up $674,600 (+16%) from 2023

Liabilities

Down

$484,274

Down $17,606 (-3.5%) from 2023

Net Assets

Up

$4,307,152

Up $692,206 (+19%) from 2023

Operations
Liabilities / Revenue33rd percentileNet Margin61st percentile

Revenue

Up

$6,951,282

Up $2,969,657 (+75%) from 2023

Expenses

Up

$6,275,125

Up $1,411,555 (+29%) from 2023

Net Income

Up

$676,157

Up $1,558,102 (+177%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth77th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$6.0M$4.0M$2.0M$0Assets 2010: $1,405,662Liabilities 2010: $215,288Net Assets 2010: $1,190,3742010Assets 2011: $1,293,318Liabilities 2011: $138,056Net Assets 2011: $1,155,2622011Assets 2012: $1,935,140Liabilities 2012: $44,438Net Assets 2012: $1,890,7022012Assets 2013: $1,518,582Liabilities 2013: $50,748Net Assets 2013: $1,467,8342013Assets 2014: $1,774,271Liabilities 2014: $87,940Net Assets 2014: $1,686,3312014Assets 2015: $1,700,544Liabilities 2015: $136,937Net Assets 2015: $1,563,6072015Assets 2016: $2,606,850Liabilities 2016: $174,925Net Assets 2016: $2,431,9252016Assets 2017: $2,980,007Liabilities 2017: $221,345Net Assets 2017: $2,758,6622017Assets 2018: $3,678,521Liabilities 2018: $174,841Net Assets 2018: $3,503,6802018Assets 2019: $3,885,975Liabilities 2019: $288,237Net Assets 2019: $3,597,7382019Assets 2020: $4,138,714Liabilities 2020: $276,511Net Assets 2020: $3,862,2032020Assets 2021: $4,406,293Liabilities 2021: $246,072Net Assets 2021: $4,160,2212021Assets 2022: $5,008,595Liabilities 2022: $581,978Net Assets 2022: $4,426,6172022Assets 2023: $4,116,826Liabilities 2023: $501,880Net Assets 2023: $3,614,9462023Assets 2024: $4,791,426Liabilities 2024: $484,274Net Assets 2024: $4,307,1522024

Highlighted filing

2024

Assets$4,791,426
Liabilities$484,274
Net Assets$4,307,152
Open 2024 Filing

Operations Trend

Revenue Growth89th percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$8.0M$6.0M$4.0M$2.0M$0-$2.0MExpenses 2010: $1,080,0622010Expenses 2011: $1,469,8062011Expenses 2012: $1,719,7692012Revenue 2013: $1,147,853Expenses 2013: $1,570,721Net Income 2013: -$422,8682013Revenue 2014: $2,007,545Expenses 2014: $1,789,048Net Income 2014: $218,4972014Revenue 2015: $1,562,564Expenses 2015: $1,685,288Net Income 2015: -$122,7242015Revenue 2016: $3,094,499Expenses 2016: $2,226,181Net Income 2016: $868,3182016Revenue 2017: $2,474,761Expenses 2017: $2,148,024Net Income 2017: $326,7372017Revenue 2018: $2,565,634Expenses 2018: $1,711,256Net Income 2018: $854,3782018Revenue 2019: $3,070,321Expenses 2019: $3,051,091Net Income 2019: $19,2302019Revenue 2020: $3,047,008Expenses 2020: $2,803,976Net Income 2020: $243,0322020Revenue 2021: $2,867,520Expenses 2021: $2,585,574Net Income 2021: $281,9462021Revenue 2022: $4,581,188Expenses 2022: $4,116,605Net Income 2022: $464,5832022Revenue 2023: $3,981,625Expenses 2023: $4,863,570Net Income 2023: -$881,9452023Revenue 2024: $6,951,282Expenses 2024: $6,275,125Net Income 2024: $676,1572024

Highlighted filing

2024

Revenue$6,951,282
Expenses$6,275,125
Net Income$676,157
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$4,791,426
Liabilities
$484,274
Net assets
$4,307,152
Revenue
$6,951,282
Expenses
$6,275,125
Net income
$676,157
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$4.79$0.48$4.31$6.95$6.28$0.68
2023Detailed filing. Detailed filing data is available for this year.$4.12$0.50$3.61$3.98$4.86$0.88
2022Detailed filing. Detailed filing data is available for this year.$5.01$0.58$4.43$4.58$4.12$0.46
2021Detailed filing. Detailed filing data is available for this year.$4.41$0.25$4.16$2.87$2.59$0.28
2020Detailed filing. Detailed filing data is available for this year.$4.14$0.28$3.86$3.05$2.80$0.24
2019Detailed filing. Detailed filing data is available for this year.$3.89$0.29$3.60$3.07$3.05$0.02
2018Detailed filing. Detailed filing data is available for this year.$3.68$0.17$3.50$2.57$1.71$0.85
2017Detailed filing. Detailed filing data is available for this year.$2.98$0.22$2.76$2.47$2.15$0.33
2016Detailed filing. Detailed filing data is available for this year.$2.61$0.17$2.43$3.09$2.23$0.87
2015Detailed filing. Detailed filing data is available for this year.$1.70$0.14$1.56$1.56$1.69$0.12
2014Detailed filing. Detailed filing data is available for this year.$1.77$0.09$1.69$2.01$1.79$0.22
2013Detailed filing. Detailed filing data is available for this year.$1.52$0.05$1.47$1.15$1.57$0.42
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.94$0.04$1.89$1.72
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.29$0.14$1.16$1.47
2010Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.41$0.22$1.19$1.08
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Jun 4, 2025
Return Version
2024v5.1
Gross Receipts
$6,981,535
Mission and Program Overview

Mission

The National Ataxia Foundation's mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.

To accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$2,778,614$2,639,462▼ $139,152
Pledges and Grants Receivable-$1,063,290-
Cash and Non-Interest-Bearing Accounts$550,112$874,850▲ $324,738
Savings and Temporary Cash Investments$468,613--
Prepaid Expenses and Deferred Charges$255,729$171,717▼ $84,012
Accounts Receivable$6,438$17,250▲ $10,812
Total Assets$4,116,826$4,791,426▲ $674,600
Other Assets Total$57,320$24,857▼ $32,463
Liabilities
Grants Payable-$311,876-
Deferred Revenue$109,810$74,205▼ $35,605
Accounts Payable and Accrued Expenses$333,967$72,839▼ $261,128
Other Liabilities$58,103$25,354▼ $32,749
Total Liabilities$501,880$484,274▼ $17,606
Net Assets / Fund Balance
Net Assets With Donor Restrictions$2,680,567$2,975,070▲ $294,503
Net Assets Without Donor Restrictions$934,379$1,332,082▲ $397,703
Total Net Assets Fund Balance$3,614,946$4,307,152▲ $692,206
Total Liabilities and Net Assets / Fund Balance$4,116,826$4,791,426▲ $674,600
Compensation and Service Providers
Top Officer Pay82nd percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Andrew RosenChief Executive OfficerFT$195,170$41,549$236,719
Lauren MooreVP and Chief Scientific OfFT$198,996$26,010$225,006
Joel SutherlandVice President Of DevelopmentFT$160,306$28,698$189,004
Kyle BilladeauVice PresidentFT$104,157$42,434$146,591

Board Members and Trustees

NameTitle
Jim KeenePresident
David BrunnertVice President
Ann RileyBoard Member
Bryan TaberyBoard Member
Bryce SuchomelBoard Member
Denise KolpackBoard Member
Hayley McLoughlinBoard Member
Jason GaleBoard Member
Mark HazlinBoard Member
Michael CammerBoard Member
Sandi BrettlerBoard Member
Serena HungBoard Member
Linda SniderSecretary
David SpottsTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$5,859,791
Program Service Revenue
$1,025,514
Investment Income
$96,230
Other Revenue
$-30,253
All Other Contributions
$5,620,062
Change in Net Assets
$676,157

Audited Revenue Reconciliation

Revenue per Audited Statements
$6,977,328
Revenue Not Reported on Financial Statements
$-26,046
Revenue Not Reported on Form 990
$145,027
Other Revenue Adjustments
$-30,253
Total Revenue per Audited Statements
$7,122,355
Total Revenue per Form 990
$6,951,282
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$2,436,737
Salaries, Compensation, and Employee Benefits$2,005,553
Other Expenses$1,832,835
Total Fundraising Expense$557,572
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$1,830,984--$1,830,984
Other Salaries and Wages$767,932$147,501$223,756$1,139,189
Advertising$719,561$37,461$16,243$773,265
Current Officers, Directors, Trustees, and Key Employees$432,794$88,012$129,922$650,728
Foreign Grants$605,753--$605,753
Conferences and Meetings$519,886$19,934$52,904$592,724
Office Expenses$34,848$58,815$61,849$155,512
Payroll Taxes$87,741$12,666$24,949$125,356
Fees for Services Other$42,490$53,968$6,971$103,429
Other Employee Benefits$49,400$13,575$17,589$80,564
Occupancy$26,323$19,634$12,387$58,344
Fees for Services Management$21,993$12,695$5,771$40,459
Fees for Services Accounting-$16,300-$16,300
Insurance-$16,144-$16,144
Pension Plan Contributions$5,958$1,637$2,121$9,716
Fees for Services Legal-$4,447-$4,447
Fees for Service Investment Mgmnt Fees-$4,207-$4,207
Other Expenses$2,240$666$1,160$666
Total Functional Expenses$5,151,601$565,952$557,572$6,275,125

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$6,430,149
Total Expenses per Form 990$6,275,125
Expenses per Audited Statements$6,270,918
Expenses Not Reported on Form 990$159,231
Expenses Not Reported on Financial Statements$4,207
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Regents of the University of MNMinneapolis, MN501c3Research$221,524
Regents of the University of MichiganAnn Arbor, MI501c3Research$190,113
Columbia University New YorkNew York, NY501c3Research$151,250
University of South FloridaTampa, FL501c3Research$128,795
University of Chicago Medical CenterChicago, IL501c3Research$107,393
Indiana University- PurdueDetroit, MI501c3Research$70,994
Regents of the University of California Los AngelesLos Angeles, CA501c3Research$68,100
Massachusetts General HospitalBoston, MA501c3Research$66,765
University of Texas SouthwesternDallas, TX501c3Research$63,400
University of Florida Department of NeurologyGainesville, FL501c3Research$62,851
Emory UniversityAtlanta, GA501c3Research$55,800
The University of ChicagoChicago, IL501c3Research$51,700
Johns Hopkins University Department of NeurologyBaltimore, MD501c3Research$50,900
Greenwood Genetic Center IncGreenwood, SC501c3Research$50,400
Baylor College of MedicineHouston, TX501c3Research$50,000
Oakland UniversityRochester, MI501c3Research$50,000
Regents of the University of Colorado BoulderDenver, CO501c3Research$50,000
University of CornellNew York, NY501c3Research$50,000
University of PennsylvaniaPhiladelphia, PA501c3Research$48,950
University of WashingtonUPICSeattle, WA501c3Research$34,400
University of California San FranciscoSan Francisco, CA501c3Research$24,400
Northwestern UniversityEvanston, IL501c3Research$13,300
Houston Methodist Research InstituteHouston, TX501c3Research$10,600

International Summary

Offices
0
Employees
0
Spending
$605,753

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
Europe (Including Iceland & Greenland) - Albania, Andorra, Austria, BelgiumResearch grants to recipients in the regionResearch Grants00$538,803
East Asia and the Pacific - Australia, Brunei, Burma, Cambodia,Research grants to recipients in the regionResearch Grants00$50,000
North America - Canada and Mexico, but not the United StatesResearch grants to recipients in the regionResearch Grants00$16,950
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$30,253
Fundraising Gross Income$0
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Walk n Roll$239,729-$15,423-
Total Events$239,729-$30,253$-30,253
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Lease liability$25,354
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, line 6

“The Foundation has free memberships. Members do not having voting rights.”

Form 990, Part VI, Section B, line 11B

“The form 990 is prepared by the Certified Public Accountant with the help of the Chief Executive Officer. The preliminary form is reviewed as needed. The form 990 is then prepared and is presented at an Executive Committee or Board Meeting prior to the return being signed and submitted to the Internal Revenue Service.”

Form 990, Part VI, Section B, line 12C

“Each responsible person (officer, employee or board member) shall annually complete a disclosure form identifying any relationships, positions or circumstances which could contribute to a potential conflict of interest. Prior to Board or Committee action, all facts shall be disclosed relating to the protential conflict of interest and such disclosure will be reflected in the minutes of the meeting. The person cannot be counted towards having a quorum to vote and is not allowed to vote on the issue. They are also not allowed to exert any personal influence in the matter. The policy shall be reviewed annually by each member of the Executive Committee.”

Form 990, Part VI, Section B, line 15

“Chief Executive Officer's position - an annual review is conducted by the Foundation's President. The performance review is based on achieving the annual goals of the Foundation. The President annually evaluates the performance in a written report and then presents the review and recommendations to the Board/Executive Committee who determine any actions, including pay raises. Other Employees - The Chief Executive Officer annually evaluates the performance of employees in a written reported saved in each employee's permanent file. The Chief Executive Officer has a salary budget as set by the full Board of Directors. The Chief Executive Officer has full discretion on the percentage of pay raises to individuals not to exceed the approved budget.”

Form 990, Part VI, Section C, line 19

“The Foundation will furnish all requests for organizing documents, conflict of interest policies and financial statements upon request. The financial statements are posted on the Foundation's website. The 990 is also available on Guidestar.org and Candid.org.”

Filing and Contact Details

Filer

Filer Name
National Ataxia Foundation Incorporated
EIN
41-0832903
Phone
7635530020
Address
PO Box 27986, Minneapolis, MN 55427

Signing Officer

Name
Andrew Rosen
Title
Chief Executive Officer
Phone
7635530020
Signed
2025-06-04
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Andrew Rosen
Formed
1957
Legal Domicile
Mn
Voting Board Members
14
Independent Board Members
14
Employees
22
Volunteers
350

Preparer

Firm
Abdo LLP
Address
5201 Eden Ave Ste 250, Edina, MN 55436
Preparer
Steven D AnsethCPA
Phone
9528359090
Supplemental Narrative

Additional Explanations

Form 990, Part XII, Line 2C:

“The Foundation's Finance Committee is responsible for the oversight of the audit.”

Financial Statement Notes

Part XI, Line 4B - Other Adjustments:

“Fundraising Expenses -30,253.”

Part XII, Line 2D - Other Adjustments:

“Fundraising Expenses 30,253.”

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This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/Form990PartVIISectionAGrp/PersonNm0Andrew Rosen
IRS990/Form990PartVIISectionAGrp/PersonNm1Lauren Moore
IRS990/Form990PartVIISectionAGrp/PersonNm2Joel Sutherland
IRS990/Form990PartVIISectionAGrp/PersonNm3Jim Keene
IRS990/Form990PartVIISectionAGrp/PersonNm4Kyle Billadeau
IRS990/Form990PartVIISectionAGrp/PersonNm5David Brunnert
IRS990/Form990PartVIISectionAGrp/PersonNm6David Spotts
IRS990/Form990PartVIISectionAGrp/PersonNm7Linda Snider
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IRS990/Form990PartVIISectionAGrp/PersonNm9Bryan Tabery
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IRS990/Form990PartVIISectionAGrp/PersonNm12Mark Hazlin
IRS990/Form990PartVIISectionAGrp/PersonNm13Serena Hung
IRS990/Form990PartVIISectionAGrp/PersonNm14Hayley McLoughlin
IRS990/Form990PartVIISectionAGrp/PersonNm15Michael Cammer
IRS990/Form990PartVIISectionAGrp/PersonNm16Denise Kolpack
IRS990/Form990PartVIISectionAGrp/PersonNm17Ann Riley
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IRS990/Form990PartVIISectionAGrp/TitleTxt0Chief Executive Officer
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IRS990/MissionDesc0The National Ataxia Foundation's mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.
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IRS990/ProgSrvcAccomActy2Grp/Desc0NAF is committed to funding cutting-edge basic and translational research into hereditary and sporadic ataxia. The goals of NAF's research program are to further elucidate the disease mechanisms of ataxias, bring early-career clinicians and scientists into ataxia research, and help drive the field towards developing treatments and a cure for ataxia. Annual grants are selected through a competitive review process that includes NAF's Medical and Research Advisory Board members and over 80 leading ataxia scientists and clinicians, both domestic and international. Each year NAF awards grants to researchers from domestic and international non-profit and for-profit institutions that directly support basic and translational ataxia research through the following funding mechanisms:1. Pioneer SCA3 Translational Research Awards: Annually granted to outstanding research proposals that aim to make significant advancements in the development of treatments and/or improvements to patient care for Spinocerebellar Ataxia Type 3 (SCA3). Proposals may incorporate other forms of ataxia but must have a predominant focus on SCA3 translational or clinical research. 2. Seed Money Research Grant: Granted primarily as "seed monies" to assist investigators in the early or pilot phase of their studies and as additional support for ongoing investigations on demonstration of need. It is hoped that these studies will be further developed to attract future funding from other sources. 3. Post-doctoral Fellowship Award: Post-doctoral fellowship awards are to serve as a bridge from post-doctoral positions to junior faculty positions. Applicants should have completed at least one year of post-doctoral training, but not more than two at the time of application and should have shown a commitment to research in the field of ataxia. The award will permit individuals to spend an additional third year in a post-doctoral position and increase chances to establish an independent ataxia research program.4. Early Career Investigator Award: The Early Career Investigator Award was created to encourage early career clinical and scientific investigators to pursue a career in the field of ataxia research. 5. Pre-doctoral Fellowship to Promote Diversity in Ataxia Research: Merit-based award intended to enhance research and/or clinical training of promising graduate students from historically underrepresented backgrounds who are matriculated in pre-doctoral or clinical health professional degree training programs and who intend careers as scientists or other clinician-scientists within the field of ataxia. 6. National Ataxia Foundation Graduate Research Fellowship: The National Ataxia Foundation Graduate Research Fellowship is a competitive, non-renewable, merit-based award intended to encourage pre-doctoral students to pursue research and a career in the field of ataxia. 7. NAF Special Grants: Based on the emergent needs of the patient and research community, priority areas of ataxia research may be identified as eligible for specialized grant funding by NAF and may be awarded outside of the annual grant programs. In addition to NAF annual grants, NAF sponsors several clinical research programs that aim to drive advancements in the ataxia research field and prepare the ataxia community for future clinical trials. One of these programs is the Ataxia Tissue and Brain Donation Program. NAF and the University of Florida's Center for NeuroGenetics (CNG) work together to maintain a repository of brain and spinal cord tissue from ataxia donors. This tissue is available to SCA researchers to help advance our understanding of these diseases and to develop new therapies. NAF sponsors both the costs of tissue donation and maintenance costs of the brain and tissue bank.
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IRS990/ProgSrvcAccomActy3Grp/Desc0Funding for several of NAF's other key clinical research programs are provided through the NAF Drug Development Collaborative (DDC). The DDC is a pre-competitive pharmaceutical industry consortium with a principal goal of accelerating the development of treatments for ataxia. The Collaborative provides a centralized source for access to resources needed to support research and development of Ataxia therapies. Specific objectives of the Collaborative include natural history and bio sample data collection, development of biomarkers, validation of rating scales, clinical trial design, patient-reported outcomes, and other data necessary for the development and approval of safe and effective therapies. Two significant programs that are largely sponsored by the DDC include:1. No-cost Genetic Counseling and Testing Initiative: This program provides virtual genetic counseling and testing for individuals at-risk for three of the most common dominant ataxias to members at no-cost to participants. The aim of this program is to help individuals overcome barriers that have historically inhibited wide-spread genetic testing as well as support drug development through expanding the patient population eligible for future clinical trials.2. Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA) Natural History Study: The CRC-SCA is one of the longest running and largest natural history studies of spinocerebellar ataxias (SCAs). A natural history study collects data that shows how a specific disease progresses in individuals over time. Natural history studies are essential for developing clinical trial designs that will facilitate drug development. There are over 300 patients enrolled at 16 CRC-SCA sites in the US and Canada. During annual visits, site investigators collect critical clinical data to aid in understanding disease progression and help guide future clinical trial design. Biofluids, such as plasma, serum, and cerebrospinal fluid, are also collected from patients and stored at the NINDS SCA-BRAC biorepository. Both deidentified clinical data and biofluids are available for request from non-participating investigators for approved research projects.
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