Form 990 for tax year 2023

Totals

Total revenue

$3,257,096

Total expenses

$2,163,052

Contributions and grants received

$2,530,133

Grants paid

$955,138

Program service revenue

$471,472

Investment income

$218,414

Other revenue

$37,077

Total assets, end of year

$7,509,902

Total liabilities, end of year

$595,166

Net assets or fund balances, end of year

$6,914,736

Program services expenses (Part IX)

$1,659,417

Management and general expenses

$374,423

Fundraising expenses

$129,212

Program service expenses (Part III)

$1,659,417

Program services were 76.7% 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 · 2023

• 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 $9.1 million to 66 research endeavors. Research areas include SUDEP, gene therapy, drug discovery, screening, treatments, genetics, epidemiology and neuronal networks. DSF's Scientific Director serves 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 $1,096,459 · Grants $918,166

• Receiving a diagnosis of Dravet syndrome (DS) can be overwhelming and may leave a family with many unanswered questions. 1. DSF Family Network: The DSF Family Network is open to any parent/legal guardian or sibling that is interested in accessing our advocacy services and programs. By joining the family network, community members can stay up to date on new advocacy resources, clinical trials, and educational and fundraising events. As part of the family network, DSF also offers moderated private support groups on Facebook for parents and caregivers of loved ones with Dravet syndrome. We limit membership in these support groups to parents and caregivers who are legally responsible for making medical decisions for the Dravet patient. In 2023, 385 people registered for the family network. 2. Newly Diagnosed Kits: DSF offers a kit for newly diagnosed families that includes a guidebook for families after diagnosis, as well as a medication bag and other materials to assure that families have the knowledge, tools, and resources they need for their child's care. In 2023, DSF mailed 131 kits. 3. Patient Assistance Grants: The DSF Patient Assistance Grant Program offers grants to patients with Dravet syndrome and related SCN1A epilepsies for necessary medical equipment, therapy devices, and educational aids associated with these conditions that are not covered through private insurance or other assistance programs. This program is open to all patients, worldwide, who are members of the DSF Family Network. DSF has awarded 234 families a total of $258k since 2009. 4. Birthday Buddies: Register your loved one with Dravet syndrome and around their birthday they will receive a birthday card and a small gift from DSF's mascot, Aurora! DSF mailed 583 gifts in 2023. 5. Super Siblings Club: To help meet the needs of Dravet siblings, DSF offers a day camp to connect siblings in-person at our biennial conference and annual Day of Dravet workshops. These opportunities address the needs of siblings, within a nurturing and fun environment. Multidisciplinary recreational activities help them to better understand their surroundings, express their feelings, and meet and bond with peers who are experiencing similar circumstances. 6. Bereavement Support: Losing someone you love or care about, particularly a child, is very painful. DSF offers information and resources for coping with grief and loss including a Bereavement Support Group and Remembrance Wall. 7. Biennial Conference: This 3-day event is unique in that it is designed to unite all groups committed to improving the lives of those with Dravet syndrome - including families, caregivers, clinicians, researchers and professionals in the pharmaceutical industry. There will be speaker presentations on the latest advances in research as well as sessions with up to date information impacting patient care. This event allows the opportunity to foster new relationships and collaborations, both for families and professionals. DSF welcomed over 300 people at the 2022 conference. 8. Day of Dravet Workshops: Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF's shared vision for a better outcome for those affected by Dravet syndrome. They take place on opposite years of our biennial conference. Workshops also feature our VIP Sib Camp and activities for patients. Learn about topics you have heard about and get accurate information to help you make confident and appropriate decisions on what will be helpful for your loved one's care. Sessions are presented by community experts - including other parents. This is a chance for patient families to connect with others in their region and have the rare opportunity for community building and connection. In 2023 over 500 attendees gathered at workshops in Colorado (Denver), Florida (Sanford), Connecticut (Stamford), California (Anaheim), and Kentucky (Newport).

  Expenses $412,525 · Grants $36,972 · Revenue $381,472

• 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. DSF hosted its 14th annual Research Roundtable, and had our largest attendance yet, with over 190 participants. In 2023, DSF organized its inaugural online gathering for our Comprehensive Care Centers. During this event, we had the chance to educate not just neurologists/epileptologists about our patient programs and resources, but also nurses, social workers, and other vital support staff. This initiative aims to ensure that patient families receive comprehensive information on resources essential for the optimal care of their loved ones, while also connecting them to a supportive patient community.

  Expenses $150,433 · Revenue $90,000

As filed on the 2023 return.

Listed in Part VII

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

• Case Western Reserve University

  $216,166

  Development of an AI-powered Dravet Syndrome Ontology. Although a significant amount of data for Dravet syndrome (DS) is available from model organisms and humans, methods to integrate and analyze these disparate data resources are limited in scale and functionality. Artificial intelligence (AI) methods such as ontologies and machine learning (ML) algorithms are ideal for complex analytics over big data to aid in knowledge discovery. Satya Sahoo, PhD has already applied a combined epilepsy ontology and ML approach to analyze data resulting in high accuracy classification models. These findings suggest that AI methods can be used for automated analysis of basic science and clinical literature to compare model systems and humans and indicate new experiments to characterize these relationships. A DSF Research Grant was awarded to Dr. Sahoo to extend the epilepsy ontology specifically for DS that together with ML algorithms can automatically index literature and enable analysis of data.

• The University of Texas at Austin

  $165,000

  Cerebellar deficits as mechanisms for motor, cognitive, and social dysfunction in Dravet syndrome. In addition to frequent and severe seizures, most people with Dravet syndrome (DS) also suffer life-altering difficulties with coordinated movement/muscle control, autism-associated behaviors, and learning and memory. The cerebellum is a brain region known to be involved in movement, cognition/memory, and social behavior, but is understudied in DS. Preliminary data showed that Purkinje cells are hypo-active in a mouse model of DS. Similar hypoactivity of this cell type causes movement disorders and autism in other neurological diseases. A DSF Research Grant was awarded to Mackenzie Howard, PhD to utilize a novel mouse model of DS that has allowed the study of DS-related genetic mutations in this specific cell type and the link to changes in comorbidities often reported in DS.

• Vanderbilt University Medical Center

  $165,000

  Cerebellar deficits as mechanisms for motor, cognitive, and social dysfunction in Dravet syndrome. A DSF Research Grant was awarded to William Nobis, PhD to investigate if chronic exposure to the odorant 2-phenylethanol ("rose odor") will decrease mortality and improve neuropsychiatric comorbidities of DS through attenuation of extended amygdalar neuronal activation. Given the long history of odorant therapy in the treatment of seizures, as well as links between the areas of the brain that receive olfactory inputs having a role in control of respiration and seizure-related breathing dysfunction, there is potential for odorants that modulate these circuits to provide a non-invasive, well-tolerated means to decrease seizure-related death. Exciting preliminary data using a mouse model of DS suggests that mortality is reduced by chronic exposure to rose odor, and this study will build on that data to explore the effects on mortality, seizure frequency and comorbidities.

• The Research Foundation for the State University of New York

  $150,000

  Genetic Substrates and Physiological Triggers for Autonomic and Cardiac Abnormalities in Dravet Syndrome. Using cellular and animal models, David Auerbach, PhD previously demonstrated that Dravet syndrome (DS) mutations result in electrical disturbances in the heart, and cardiac arrhythmias preceded Sudden Unexpected Death in Epilepsy (SUDEP). Patients DS are at a high risk of SUDEP. A DSF Clinical Research Grant was awarded to Dr. Auerbach to perform detailed ECG analysis in two severe forms of epilepsy (DS & Lennox-Gastaut Syndrome) during specific non-seizure physiological states and investigate the temporal evolution of these measures leading up to and following a seizure, which will foster the future development and validation of ECG markers for cardiac-mediated SUDEP risk in DS patients.

• The University of Utah

  $75,000

  Evaluating the effects of sub-chronic exposure to sub-clinical levels of CO on Dravet etiology and associated SUDEP risk. Carbon monoxide (CO) is one of the top most deadly air pollutants that is positively associated with an increased risk of epilepsy hospitalizations and sub-clinical seizures. CO is known to cause hypoxemia, hypoxia and impair lung function. Dravet syndrome (DS), a debilitating pediatric genetic epilepsy is characterized by refractory seizures, increased mortality rate due to sudden unexpected death in epilepsy (SUDEP), and cognitive/psychomotor dysfunction. SUDEP has no clear mechanisms but is reported to be caused by cardio-respiratory mechanisms. A DSF Postdoctoral Fellowship was awarded to Ashwini Sri Hari, PhD to address the question of whether and how CO exposure exacerbates pathomechanisms in DS patients and their associated SUDEP risk.

Provenance

Return type

form_990

Tax year

2023

Filed

16 April 2024

IRS schema version

2023v5.0

Source object

202411079349300116

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