Form 990 for tax year 2022

Totals

Total revenue

$2,515,782

Total expenses

$2,028,839

Contributions and grants received

$1,713,227

Grants paid

$693,698

Program service revenue

$662,596

Investment income

$88,364

Other revenue

$51,595

Total assets, end of year

$6,249,148

Total liabilities, end of year

$488,374

Net assets or fund balances, end of year

$5,760,774

Program services expenses (Part IX)

$1,638,548

Management and general expenses

$311,273

Fundraising expenses

$79,018

Program service expenses (Part III)

$1,638,548

Program services were 80.8% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2022

• DSF funds research for better treatments and a cure for Dravet syndrome and related epilepsies by awarding research grants to qualified scientists and clinicians. These grants fund initial research hypotheses that have not been fully explored. The results extracted from this type of research will help bring untested research to the point that it can qualify for larger governmental funding. Since 2009, DSF has awarded over $6.4 million to 56 research endeavors. Research areas include SUDEP, gene therapy, drug discovery, screening, treatments, genetics, epidemiology and neuronal networks. In 2020, DSF hired a Scientific Director to serve as the liaison between the medical/scientific community and DSF, developing strategies to support research, manage DSF's involvement in projects, and move projects forward with assistance in project management, manuscript preparation, and other writing opportunities. The Scientific Director acts as a representative of DSF to other institutions including NIH, PDA, pharma and biotechnology companies.

  Expenses $852,551 · Grants $667,345 · Revenue $10,000

• Receiving a diagnosis of Dravet syndrome (DS) can be overwhelming and may leave a family with many unanswered questions. DSF produces a biennial professional and family conference designed to unite community stakeholders to address these questions - families, caregivers, clinicians, researchers, and other professionals. Our 2022 conference welcomed over 300 parents, children and professionals. The 3-day event featured over 30 speakers who presented on current research, co-morbidities, best care practices, and daily living challenges. In 2017 the DSF Family Network was established to provide regional support to families. As part of this initiative, 5 educational workshops are held across the country on odd-numbered years, opposite of our biennial conference. These workshops are a time for patients and their families to come together to learn about research and treatment options, connect with others in their region, and be a part of DSF's shared vision for a better outcome for those affected by DS. In addition to these conferences and workshops, DSF has established an international patient assistance grant program to help patients receive medical equipment, therapy devices, and education aides associated with DS that are not covered through private insurance or other assistance programs. Since 2009, DSF has awarded over $222k in assistance to families. On February 3, 2022, DSF held an Externally-Led Patient-Focused Drug Development meeting on DS. This meeting was a long-awaited opportunity for our patient community to educate representatives of the FDA and pharmaceutical companies, as well as academic researchers and clinicians, about the challenges that individuals living with DS face daily. Our objective was to give patient families a platform to share what it means to have a DS diagnosis, which symptoms should be prioritized, and how this disease impacts the quality of life for the patient and family so that the FDA and pharmaceutical companies can understand the patient experience.

  Expenses $631,500 · Grants $26,353 · Revenue $503,096

• DSF produces an annual research roundtable meeting to provide opportunity for researchers and clinicians to collaborate and discuss better treatment options and a roadmap toward a cure and how to best facilitate both. This meeting started in 2010 as a brainstorming session for the few researchers working on Dravet syndrome (DS). DSF hosted its 13th annual Research Roundtable, and had our largest attendance yet, with over 200 participants. In 2022, DSF developed a professional education video series to highlight the latest guidelines in clinical care. The development of this updated professional educational series was prompted by the recent publication of the International Treatment Consensus on Diagnosis and Management of Dravet Syndrome. Also in 2022, DSF invited adult neurologists with an interest in learning more about DS to attend a meeting focused specifically on how to better support families through the transition from pediatric to adult care.

  Expenses $154,497 · Revenue $149,500

As filed on the 2022 return.

Listed in Part VII

• Mary Anne Meskis

  Executive Director

  Total calculated

  $155,000

  From this org

  $155,000

  From related orgs

  $0

  Other

  $0

  Hours/week

  40

  Schedule J breakdown matched by us

  Base

  $155,000

  Bonus

  $0

  Other

  $0

  Deferred

  $0

  Nontaxable benefits

  $0

  Filer's total

  $155,000

• Veronica Hood

  Scientific Director

  Total calculated

  $151,200

  From this org

  $151,200

  From related orgs

  $0

  Other

  $0

  Hours/week

  40

  Schedule J breakdown matched by us

  Base

  $151,200

  Bonus

  $0

  Other

  $0

  Deferred

  $0

  Nontaxable benefits

  $0

  Filer's total

  $151,200

• Jamie Cohen

  Chief Financial Officer

  Total calculated

  $88,560

  From this org

  $88,560

  From related orgs

  $0

  Other

  $0

  Hours/week

  40

• Kate Hintz

  President

  Total calculated

  $0

  Hours/week

  1

• Ted Odlaug PhD

  Vice President

  Total calculated

  $0

  Hours/week

  1

• Josh Goldman

  Treasurer

  Total calculated

  $0

  Hours/week

  1

• Tim Wood

  Past Treasurer

  Total calculated

  $0

  Hours/week

  1

• Ross Nicholas

  Secretary

  Total calculated

  $0

  Hours/week

  1

• Nathan Batt

  Trustee

  Total calculated

  $0

  Hours/week

  1

• Claire Carey

  Trustee

  Total calculated

  $0

  Hours/week

  1

• Ashley Kerns

  Trustee

  Total calculated

  $0

  Hours/week

  1

• Joseph Sullivan MD

  Trustee

  Total calculated

  $0

  Hours/week

  1

• Jenny Tischer

  Past Trustee

  Total calculated

  $0

  Hours/week

  1

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

• The Ohio State University

  $150,000

  Targeting Molecular Responses to Seizures in Dravet Syndrome- Dr. Wagnon's work previously identified that the gene Npas4 is reduced in a mouse model of Dravet syndrome. This project hypothesized that restoration of high Npas4 expression could ameliorate seizures and other symptoms using viral-mediated delivery of Npas4 to the brain of mice with SCN1A haploinsufficiency.

• The Washington University

  $150,000

  Ketogenic Diet Modulated Brain Energy Metabolism in Dravet Syndrome- Dr. Thio and Dr. Garbow work together on this collaborative project to better understand the mechanisms whereby the ketogenic diet reduces seizures in Dravet syndrome. They will investigate two metabolic pathways in a genetic mouse model of Dravet syndrome and use neuroimaging techniques to assess these impacts within the brain.

• University of Colorado Denver

  $150,000

  Lymphoblast Cell Lines as a Model to Uncover Metabolic Defects in Dravet Syndrome- Dr. Patel and Dr. Knupp work together on this collaborative project to establish lymphoblast cell lines from the blood of patients with Dravet syndrome and their unaffected siblings. This library of cell lines will then be used to investigate alterations in energy metabolism that may impact patients with Dravet syndrome as well as stand as a future resource for investigations of new drugs, diets, and treatment responses.

• The Regents of the University of Michigan

  $50,000

  Optimizing the Regional Administration of SCN8a-targeting RNAi Therapy- Dr. Yu's project worked to develop an AAV-delivery for a genetic-based therapy targeting the SCN8A gene. While the majority of cases of Dravet syndrome are caused by mutations in SCN1A, Dr. Yu and the Meisler lab have shown that using genetic-based therapies to reduce expression of the SCN8A gene can compensate for loss-of-function SCN1A-mutations that cause Dravet syndrome.

Provenance

Return type

form_990

Tax year

2022

Filed

17 April 2023

IRS schema version

2022v5.0

Source object

202301089349300125

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