2024-04-16T07:59:55-07:00 2023-12-31 990 2023-01-01 270924627 DRAVET SYNDROME FOUNDATION INC DRAV 2033921955 PO Box 3026 Cherry Hill NJ 08034 Ted Odlaug President 2033921955 2024-04-16 Ted Odlaug 999009999 1 1 11 1 AAL2 X 2023 2023-04-26 12:10:37Z Ted Odlaug PO Box 3026 Cherry Hill NJ 08034 3540301 0 X www.dravetfoundation.org X 2009 CT The mission of the Dravet Syndrome Foundation is to aggressively raise funds for Dravet syndrome & related epilepsies; support & fund research; increase awareness; & provide support to affected individuals & families. 9 9 13 100 0 0 1713227 2530133 662596 471472 88364 218414 51595 37077 2515782 3257096 693698 955138 0 0 503705 695982 0 0 129212 831436 511932 2028839 2163052 486943 1094044 6249148 7509902 488374 595166 5760774 6914736 The mission of the Dravet Syndrome Foundation is to aggressively raise funds for Dravet syndrome & related epilepsies; support & fund research; increase awareness; & provide support to affected individuals & families. We understand the ongoing need to fund innovative research, the urgency in finding better treatments, the motivation of our donors to make an impact specifically in the fields of Dravet syndrome and related epilepsies, the importance of transparency and accountability of not only our organization, but the researchers that we fund, and the need for global collaboration in order to find a cure. 0 0 1096459 918166 0 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. 412525 36972 381472 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). 150433 90000 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. 0 0 0 1659417 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 0 1 1 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 6 0 1 13 1 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 X 9 9 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 0 0 0 AL AR CA FL GA IL KS KY MA MD MI MN MO MS NC NH NJ NM NY OR PA RI SD TN UT VA WI WV X X X Jamie Cohen 2033921955 522 Mackin Drive Cherry Hill NJ 08002 Mary Anne Meskis Executive Director 40 0 X 156224 0 0 Veronica Hood Scientific Director 40 0 X 154474 0 0 Jamie Cohen Chief Financial Officer 40 0 X 101563 0 0 Ted Odlaug PhD President 1 0 X X 0 0 0 Josh Goldman Treasurer 1 0 X X 0 0 0 Ross Nicholas Vice President 1 0 X X 0 0 0 Nathan Batt Trustee 1 0 X 0 0 0 Claire Carey Secretary 1 0 X X 0 0 0 Ashley Kerns Trustee 1 0 X 0 0 0 Joseph Sullivan MD Trustee 1 0 X 0 0 0 Bill Kirshner Trustee 1 0 X 0 0 0 Gail Farfel Trustee 1 0 X 0 0 0 Kate Hintz Past President 1 0 X 0 0 0 Brad Galer Past Trustee 1 0 X 0 0 0 412261 0 0 3 1 1 0 Geben Communication 143 E Main St 200 Columbus OH 43215 Media Relations 155000 1 0 0 1309488 0 0 1220645 0 2530133 Professional Education & Meetings 813319 90000 90000 0 0 Research Grants 813319 0 0 0 0 Patient & Family Services 813319 381472 381472 0 0 0 0 0 0 471472 218414 0 0 218414 0 0 0 0 0 0 0 0 0 0 0 0 320282 1309488 283205 37077 0 37077 0 3257096 471472 0 255491 X 768166 768166 29732 29732 157240 157240 262797 41652 203457 17688 364077 258880 34519 70678 19521 9320 8528 1673 49587 23698 18996 6893 1700 1700 7500 7500 184623 149720 34903 0 514 514 32569 13784 7575 11210 8150 1254 6649 247 61929 49517 8829 3583 161974 153051 6083 2840 5434 1098 2270 2066 Bank & Credit Card Processing Fees 14663 358 14204 101 Charity Registration Fees 4588 0 4588 Dues & Subscriptions 28288 1947 14622 11719 2163052 1659417 374423 129212 560961 369253 447978 571462 54682 36608 6472 5418 11792 83285 5167263 6443876 6249148 7509902 37308 68571 299923 462833 151143 63762 0 0 488374 595166 X 5548913 6887248 211861 27488 5760774 6914736 6249148 7509902 1094044 59918 0 0 0 0 X 0 1 X 1 0 X 1609408 1228571 1437446 1713227 2530132 8518784 1609408 1228571 1437446 1713227 2530132 8518784 8518784 42174 16250 5151 88364 218415 370354 8889138 0.95834 0.97994 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 0 X 3501387 59918 0 0 0 59918 3441469 0 -184373 -184373 3257096 2163052 0 0 0 0 0 2163052 0 0 0 2163052 Schedule D, Part X, Line 2 DSF recognizes the effect of tax positions only when they are more than likely than not of being sustained. Management has determined that DSF had no uncertain tax positions that qualify for either recognition or disclosure in the financial statements. In the normal course of business DSF's tax filings are subject to examination by federal and state authorities. The tax returns for the years ended December 31, 2020 and forward are subject to examination by taxing authorities. Schedule D, Part XI, Line 4b Change in net assets with donor restrictions Europe (including Iceland and Greenland) Reactivating Scn1a gene in different interneuron subtypes to dissect their contribution to Dravet syndrome phenotype. Dravet syndrome is a devastating epileptic syndrome with associated relevant behavioral alterations. Heterozygous mutations in Scn1a gene account for the disease and its gene product, the sodium channel Nav1.1, is relevant for neuronal activity. While much is understood about the role of Scn1a in inhibitory GABAergic interneurons, less is understood about the contributions of other neuronal subtypes to the complex mechanisms underlying the progression of DS. A DSF Research Grant was awarded to Dr. Gaia Colasante to employ a reversible genetic mouse model of DS to investigate the main aspects of the Dravet phenotype following restoration of Nav1.1 to normal levels in select neuron subtypes. The results of this study will advance the knowledge in the field and, most importantly, will provide information relevant for the setting of more efficient gene therapy strategies. 150000 Wire Transfer 0 0 Patient Assistance Grants. The DSF Patient Assistant Grant program offers grants to patients with Dravet syndrome and related 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. Europe (including Iceland and Greenland) 3 3000 Wire Transfer 812 Items that are currently covered under this program include: durable medical goods (such as wheelchairs, orthotics, cooling vests, etc.), therapy equipment, communication devices such as iPads, and costs associated with implementation of the ketogenic diet. By awarding these grants, DSF is making no recommendation to the appropriateness or safety of a particular piece of equipment or therapy in treating Dravet syndrome and associated epilepsies and conditions. DSF and its Board of Directors are not responsible for the safety and use of awarded equipment or therapies. Applicants are strongly urged to consult with their medical professionals and therapists regarding equipment and therapies that would be most beneficial for the situation. FMV Patient Assistance Grants. The DSF Patient Assistant Grant program offers grants to patients with Dravet syndrome and related 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. North America (including Canada and Mexico, but not the United States) 2 761 Wire Transfer 1690 Items that are currently covered under this program include: durable medical goods (such as wheelchairs, orthotics, cooling vests, etc.), therapy equipment, communication devices such as iPads, and costs associated with implementation of the ketogenic diet. By awarding these grants, DSF is making no recommendation to the appropriateness or safety of a particular piece of equipment or therapy in treating Dravet syndrome and associated epilepsies and conditions. DSF and its Board of Directors are not responsible for the safety and use of awarded equipment or therapies. Applicants are strongly urged to consult with their medical professionals and therapists regarding equipment and therapies that would be most beneficial for the situation. FMV Patient Assistance Grants. The DSF Patient Assistant Grant program offers grants to patients with Dravet syndrome and related 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. Middle East and North Africa 1 288 Items that are currently covered under this program include: durable medical goods (such as wheelchairs, orthotics, cooling vests, etc.), therapy equipment, communication devices such as iPads, and costs associated with implementation of the ketogenic diet. By awarding these grants, DSF is making no recommendation to the appropriateness or safety of a particular piece of equipment or therapy in treating Dravet syndrome and associated epilepsies and conditions. DSF and its Board of Directors are not responsible for the safety and use of awarded equipment or therapies. Applicants are strongly urged to consult with their medical professionals and therapists regarding equipment and therapies that would be most beneficial for the situation. FMV Patient Assistance Grants. The DSF Patient Assistant Grant program offers grants to patients with Dravet syndrome and related 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. Sub-Saharan Africa 1 688 Items that are currently covered under this program include: durable medical goods (such as wheelchairs, orthotics, cooling vests, etc.), therapy equipment, communication devices such as iPads, and costs associated with implementation of the ketogenic diet. By awarding these grants, DSF is making no recommendation to the appropriateness or safety of a particular piece of equipment or therapy in treating Dravet syndrome and associated epilepsies and conditions. DSF and its Board of Directors are not responsible for the safety and use of awarded equipment or therapies. Applicants are strongly urged to consult with their medical professionals and therapists regarding equipment and therapies that would be most beneficial for the situation. FMV 0 0 0 0 0 0 Dance for Dravet 529229 407223 122006 0 0 4438 50842 2000 29581 Strike Out Dravet 445086 380111 64975 0 0 5184 40367 699 31842 17 644086 521070 123016 0 0 10699 43302 6471 57559 1618401 1308404 309997 0 0 20321 134511 9170 118982 282984 27013 1 Case Western Reserve University 10900 Euclid Ave Cleveland OH 44106 341018992 501(c)(3) 216166 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 Research Foundation for the State University of New York 35 State Street Albany NY 12207 141368361 501(c)(3) 150000 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 Texas at Austin 3925 West Braker Lane Ave Bldg 156 Suite 3340 Austin TX 78759 746000203 Government Entity 165000 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. The University of Utah 201 S Presidents Circle Room 210 Salt Lake City UT 84112 876000525 501(c)(3) 75000 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. Vanderbilt University Medical Center 3319 West End Ave Suite 700 Nashville TN 37203 352528741 501(c)(3) 165000 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. 5 0 Patient Assistance Grants. The DSF Patient Assistant Grant program offers grants to patients with Dravet syndrome and related 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. The DSF Disaster Relief and Recovery Fund was established for patients with Dravet syndrome that have been impacted by natural and other significant natural disaster events in the U.S., such as tornados, hurricanes, earthquakes. Flooding that results from a significant natural disaster event would also qualivy. Families that are members of the DSF Family network may apply for a $500 Vica car or Amazon E-card to be used for lodging, food supplies or however needed. 38 2540 26792 FMV Items that are currently covered under this program include: durable medical goods (such as wheelchairs, orthotics, cooling vests, etc.), therapy equipment, communication devices such as iPads, and costs associated with implementation of the ketogenic diet. By awarding these grants, DSF is making no recommendation to the appropriateness or safety of a particular piece of equipment or therapy in treating Dravet syndrome and associated epilepsies and conditions. DSF and its Board of Directors are not responsible for the safety and use of awarded equipment or therapies. Applicants are strongly urged to consult with their medical professionals and therapists regarding equipment and therapies that would be most beneficial for the situation. Caregiver Connect Grants. Caregiver Connect Grants are available from $100-$400 and can partially or fully fund a local Dravet family gathering or an ongoing Dravet support group in your area. The goal of the grants is to allow our community members to connect and receive support from one another. At this time, Caregiver Connect grants are only available for events within the United States that are members of the DSF Family Network. Funds are not available for parties for an individual child or family, awareness events, or for the benefit of individuals outside of the Dravet community. 1 400 Schedule I, Part I, Line 2 DSF provides funds for research. The organizations receiving this assistance are required to provide written progress reports on their research into finding a cure for Dravet syndrome and related epilepsies. The Scientific Director of DSF reviews the written progress reports and discusses the research projects and progress with the awarded organization. DSF also provides funding to patients with Dravet syndrome and related epilepsies for necessary medical equipment, therapy devices and education aids associated with these conditions that are not covered through private insurance or other assistance programs. Applicants are required to submit an application that includes a recent letter from the child's healthcare provider explaining the medical necessity of the request and when possible, a letter of denial from the insurance provider. X X X 0 0 0 0 0 0 0 0 0 Mary Anne Meskis Executive Director 157248 0 2000 0 0 0 6007 0 0 0 165255 0 0 0 Veronica Hood Scientific Director 157248 0 250 0 0 0 5937 0 0 0 163435 0 0 0 Form 990, Part VI, Section B, Line 11b A copy of Form 990 and all related schedules is provided to the executive committee of the board of directors for review prior to filing with the Internal Revenue Service. Form 990, Part VI, Section B, Line 12c A conflict of interest disclosures statement is distributed and signed by each board member annually. Conflicts are dealt with on a case-by-case basis. Form 990, Part VI, Section C, Line 19 DSF makes its governing documents and conflict of interest policy available to the public upon written request from the president. Financial statements are available for public view on the organization's website. Form 990, Part IX, Line 11g Other fees for services include Media Relations ($180,000), Payroll & Human Resource ($3,903) and Translation Services ($720).