2025-04-22T12:58:23-07:00 2024-12-31 990 2024-01-01 270924627 DRAVET SYNDROME FOUNDATION INC DRAV 2033921955 PO Box 3026 Cherry Hill NJ 08034 Ross Nicholas President 2033921955 2025-04-22 1 2024 2025-03-06 01:10:19Z Ross Nicholas PO Box 3026 Cherry Hill NJ 08034 4523327 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 2530133 3106931 471472 734789 218414 304376 37077 75526 3257096 4221622 955138 2509120 0 0 695982 841275 0 0 237361 511932 908777 2163052 4259172 1094044 -37550 7509902 8536916 595166 1560863 6914736 6976053 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 2672460 2485115 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 $10.5 million to 71 research endeavors. Research areas include SUDEP, gene therapy, drug discovery, screening, treatments, genetics, epidemiology and neuronal networks. DSF has also supported the development of a commercial line of iPSC cells for researchers and the biotechnology industry. 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, FDA, pharma and biotechnology companies. 764750 24006 637288 Receiving a diagnosis of Dravet syndrome (DS) can be overwhelming, leaving families with many unanswered questions. To support our patient community, DSF provides a variety of educational, advocacy, and support resources: These initiatives are part of DSF's commitment to providing vital resources and fostering a strong, supportive community for those affected by Dravet syndrome. DSF Family Network: Open to any parent, legal guardian, or sibling interested in our advocacy services and programs, the Family Network keeps members informed about new advocacy tools, clinical trials, educational opportunities, and fundraising events. It also includes moderated private Facebook support groups for parents and caregivers of individuals with Dravet syndrome. Membership is limited to those legally responsible for making medical decisions for the patient. In 2024, 347 people joined the Family Network. Newly Diagnosed Kits: DSF provides newly diagnosed families with a kit that includes a guidebook for navigating life after diagnosis, a medication bag, and other materials to ensure they have the knowledge and tools needed for their child's care. In 2024, DSF distributed 131 kits. Patient Assistance Grants: The DSF Patient Assistance Grant Program offers financial support to patients with Dravet syndrome and related SCN1A epilepsies for medical equipment, therapy devices, and educational aids not covered by private insurance or other programs. This program is available to all patients worldwide who are members of the DSF Family Network. Since 2009, DSF has awarded $279,000 to 249 families. Birthday Buddies: Families can register their loved one with Dravet syndrome to receive a birthday card and small gift from DSF's mascot, Aurora, around their birthday. In 2024, DSF sent 640 gifts. Super Siblings Club: DSF provides a day camp at our biennial conference and annual Day of Dravet workshops for siblings of individuals with Dravet syndrome. These events offer a fun and supportive environment for siblings to connect, express their feelings, and bond with others facing similar challenges. Bereavement Support: Losing a loved one, especially a child, is profoundly painful. DSF offers resources for coping with grief, including a Bereavement Support Group and Remembrance Wall. Legislative Advocacy Program: We are committed to keeping our patient community informed about legislative actions affecting Medicaid and rare disease research, which are essential for maintaining access to care and driving advancements in treatment for Dravet syndrome. By ensuring our constituents have accurate and nonpartisan information, they can advocate for their loved one and family effectively. Biennial Conference: This 3-day event brings together families, caregivers, clinicians, researchers, and pharmaceutical professionals to collaborate on improving the lives of those with Dravet syndrome. The conference features presentations on the latest research and patient care, fostering new relationships and collaborations. Over 500 people attended the 2024 conference. Day of Dravet Workshops: Held in alternating years from the biennial conference, these workshops offer families the opportunity to learn about research, treatment options, and connect with others. Sessions are led by community experts, including fellow parents. The workshops also include our VIP Sib Camp and activities for patients. In 2023, over 500 attendees participated at workshops in Colorado (Denver), Florida (Sanford), Connecticut (Stamford), California (Anaheim), and Kentucky (Newport). 165700 0 97500 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 15th annual Research Roundtable with nearly 190 participants. 0 0 0 3602910 1 1 0 1 0 0 0 0 0 1 0 0 0 0 0 1 1 0 0 0 1 1 0 0 1 0 0 1 1 1 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 1 13 0 1 13 1 0 0 0 0 0 1 1 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 FL IL KS KY MA MD MI MN MO MS NH NJ NM NY RI X X X Jamie Cohen 2033921955 522 Mackin Drive Cherry Hill NJ 08002 Mary Anne Meskis Executive Director 40 0 X 172586 0 0 Veronica Hood Scientific Director 40 0 X 165459 0 0 Jamie Cohen Finance & Program Director 40 0 X 108866 0 0 Ted Odlaug PhD President 1 0 X X 0 0 0 Ross Nicholas Vice President 1 0 X X 0 0 0 Claire Carey Secretary 1 0 X X 0 0 0 Josh Goldman Treasurer 1 0 X X 0 0 0 Nathan Batt Trustee 1 0 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 Amanda Prather Trustee 1 0 X 0 0 0 446911 0 0 3 0 1 0 Geben Communication 143 E Main St 200 Columbus OH 43215 Media Relations 150000 1 0 0 1412646 0 0 1694285 0 3106931 Professional Education & Meetings 813319 97500 97500 0 0 Patient & Family Services 813319 637289 637289 0 0 0 0 0 0 734789 304376 0 0 304376 0 0 0 0 0 0 0 0 0 0 0 0 377231 1412646 301705 75526 0 75526 0 4221622 734789 0 379902 X 1987617 1987617 22540 22540 498963 498963 281793 42846 231432 7515 471622 283914 38016 149692 26890 11920 10688 4282 60970 26239 21782 12949 10000 10000 158070 122450 35620 0 52271 10895 19603 21773 6824 3266 2469 1089 2643 881 881 881 84526 69884 7370 7272 526603 512011 10661 3931 5863 1747 1512 2604 Bank & Credit Card Fees 21737 1366 14522 5849 Charity Registration Fees 5031 0 5031 0 Dues & Subscriptions 35209 6371 9314 19524 4259172 3602910 418901 237361 369253 383617 571462 1696246 36608 36352 5418 19025 83285 56059 6443876 6345617 7509902 8536916 68571 50233 462833 1493749 63762 16881 0 0 595166 1560863 X 6887248 6937386 27488 38667 6914736 6976053 7509902 8536916 -37550 98867 0 0 0 0 X 0 1 X 1 0 X 1228571 1437446 1713227 2530132 3106930 10016306 1228571 1437446 1713227 2530132 3106930 10016306 10016306 16250 5151 88364 218415 304376 632556 10648862 0.94060 0.95834 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 2984 6298 9282 4249889 4259171 362959 90740 0 0 0 0 0 362959 362959 544439 0 0 0 9282 9282 0 0 0 90740 90740 136110 0 0 0 2984 2984 549579 271071 117023 0 0 0 937673 228680 250000 70899 0 0 0 549579 275171 0 -46491 0 0 0 228680 101887 150000 23285 0 0 0 275172 0 100000 1887 0 0 0 101887 0.9989 0.0011 0 0 0 0 0 X 4309310 98867 0 0 0 98867 4210443 0 11179 11179 4221622 4214080 0 0 0 0 0 4214080 0 45092 45092 4259172 Schedule D, Part V, Line 4 The purpose of the Endowment is to support the mission of the Foundation by providing an alternative source of funds for current and future use. The endowment has two primary goals. First, the principal of the endowment's assets which are not self-funded, must be preserved in perpetuity; second, the endowment should strive to achieve investment returns sufficient to supplement ongoing Foundation operations. To the extent these first two goals are achieved, the Foundation endeavors to grow the endowment so that it represents an even larger source of funding for future generations. 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 subjected to examination by federal and state authorities. The tax returns for the years ended December 31, 2021 and forward are subject to examination by taxing authorities. Schedule D, Part XI, Line 4b Change in net assets with donor restrictions Schedule D, Part XII, Line 4b Present value discount on grant payable not recognized on Form 990. 1 Europe (including Iceland and Greenland) 0 0 Grantmaking Research grants. 250000 North America (including Canada and Mexico, but not the United States) 0 0 Grantmaking Research grants. 248963 0 0 498963 Europe (including Iceland and Greenland) RCSI University of Medicine and Health Sciences. Most caregivers report concerns about sleep problems and highlight the urgent need for a better diagnosis and management of severe sleep disorders in Dravet syndrome (DS). The circadian system determines the 24-hour cycles in body changes, which include the regulation of sleep patterns, hormones, body temperature, and brain waves. The precise molecular mechanisms of sleep disturbances in DS children are poorly understood and there are no tools to predict the risk of developing severe sleep problems. This project will focus on characterizing sleep and circadian patterns in DS children and their families, using multiple clinical and molecular assessments involving questionnaires, a long-term actigraph device, and saliva collections. 250000 Wire Transfer 0 FMV North America (including Canada and Mexico, but not the United States) The University of British Columbia - Individuals with Dravet syndrome (DS) have a higher chance of dying compared to those with other forms of seizures, and one common cause of this is sudden unexpected death in epilepsy (SUDEP). It is not understood how SUDEP occurs in DS, but seizures can cause rapid or very slow heart rates. In a mouse model of DS, seizures affected the part of the brain that controls the heart and breathing and this suggests that abnormal heart rhythms triggered by seizures could be a major factor in SUDEP. This study will use a heart monitor placed under the skin in 20 individuals with DS to measure their heart rhythms during seizures over a period of two years or longer. Information obtained from these monitors and seizure diaries will be analyzed to identify any serious abnormal heart rhythms that occur during seizures. This study aims to help us better understand how seizures affect the heart and if they can lead to life threatening heart rhythms. 247498 Wire Transfer FMV 2 0 0 0 0 0 0 0 Schedule F, 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. Dance for Dravet 563601 430926 132675 0 0 5381 62339 6716 21366 A Night Under the Stars 341118 256785 84333 0 0 0 41207 4350 22600 22 885158 724935 160223 0 0 11533 45553 10925 69735 1789877 1412646 377231 0 0 16914 149099 21991 113701 301705 75526 1 Children's Hospital of Philadelphia 2716 South Street Philadelphia PA 191462305 231352166 501(c)(3) 1000000 FMV Individuals with Dravet syndrome (DS) can have different disease courses, and there are important differences in how seizure and development affect them over time. Identifying the causes of variation within the patient population may be helpful in providing accurate prognosis and developing new treatments. This project will generate broad genetic data with whole genome sequencing on 500 individuals with DS. These genetic analyses will be paired with clinical data using pioneered novel methods to transform clinical information to a format that can be used for computational analysis. Finally, this project is built for data sharing - all biosample data, genomic data, and clinical data will be shared within the DS Community. Regents Of The University Of Michigan 3003 South State Street Ann Arbor MI 48109 386006309 501(c)(3) 500000 FMV Despite recent advances in small molecule drug discovery, the majority of Dravet syndrome (DS) patients remain intractable and non-seizure symptoms are not addressed. This project aims to exploit an alternative therapeutic strategy that has been successful in mouse models: Medial Ganglionic Eminence (MGE) progenitor cell transplantation to restore healthy fast-spiking interneurons in DS patient brains. While transgenic mice have provided invaluable insights into seizures and some comorbidities associated with DS, mice have critical differences in physiology and neuroanatomy compared to humans and thus are not the most appropriate model to test a cell transplantation-based therapy. In contrast, this study will use rabbits, which are larger vertebrates, more similar to humans. The results of this large animal work will strengthen the preclinical foundation for future cell transplantation therapeutic strategies in DS patients. Brown University Box 1929 Providence RI 029129002 050258809 501(c)(3) 250000 FMV The scientific understanding of how the SCN1A gene changes brain activity is rapidly evolving. This work will explore whether a brain cell that is integrally important in Dravet syndrome symptomatology has disruptions that lead to specific malfunctions. This work aims to determine how mutations in the SCN1A gene impact these cells' normally powerful ability to "put the brakes on" the brain when it is too active. We believe that the loss of this "brake" may lead to seizures, and our experiments may yield important clues about how to get it working again. Children's Hospital of Philadelphia 2716 South Street Philadelphia PA 191452305 231352166 501(c)(3) 75000 FMV Mutations in the SCN1A gene most commonly cause reduced functioning of the Nav1.1 protein and lead to Dravet syndrome, a debilitating epilepsy disorder. However, a new class of SCN1A mutations causes excessive activity of Nav1.1. Individuals with these mutations exhibit an even more severe form of epilepsy as well as developmental delay and intellectual disability. This research group has generated the first mouse expressing a patient-derived mutation associated with this severe early-onset condition. In this fellowship, they will evaluate the novel mouse for neurological abnormalities, including seizures and movement disorders. Additionally, they will investigate the electrical properties of neurons. The overall goal is to understand the mechanism by which both reduced and excessive activity of Nav1.1 can cause epilepsy and to identify treatments for both disorders. University of Colorado Denver 13001 E 17th Place Aurora CO 80045 846000555 501(c)(3) 75000 FMV Current precision therapeutic clinical trials for Dravet syndrome (DS) utilize seizure frequency as the primary outcome measure, but using this alone to assess outcome does not capture the full array of challenges associated with DS. This project will focus on refining a set of clinician and caregiver-reported outcome measures previously created for CDKL5-deficiency disorder and piloting them in patients with DS. The overarching objective is to design valid and feasible outcome measures specifically for DS that represent the full range of the phenotype. The creation of the DS clinical severity assessment-clinician and caregiver (DS-CSA) will be a crucial step towards disease modifying clinical trial readiness in DS. Regents Of The University Of Michigan 3003 South State Street Ann Arbor MI 48109 386006309 75000 FMV Individuals with Dravet syndrome (DS) suffer from severe seizures that cannot be completely controlled by medications. While most epilepsy research has focused on the more superficial brain regions that we know are prone to seizures, an improved understanding of the role of deeper brain regions in epilepsy may open the door to new therapies. The focus of this proposal is a deep brain region called the locus coeruleus, which sends noradrenergic projections throughout seizure-prone brain regions. The locus coeruleus is known as a "master regulator" that coordinates brain-wide states, such as reward and attention; this project will test the hypothesis that it also plays a critical role in seizures in DS using a mouse model of DS, to (1) determine the activity of noradrenergic neurons during seizures and (2) test whether their activation curtails seizures. Coriell Institute for Medical Research 403 Haddon Ave Camden NJ 08103 210672684 501(c)(3) 12617 FMV This project aims to establish a biobank of five unique lines of commercially-available induced pluripotent stem cells (iPSCs) from patient blood samples. The cellular reprogramming will be conducted by the Coriell Institute for Medical Research and samples will be housed and distributed through an additional partnership with the Orphan Disease Center at The University of Pennsylvania. Cell lines will be available to researchers in academic and for-profit research settings at a low cost, set to cover the long-term maintenance of the biobank effort. 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 qualify. Families that are members of the DSF Family network may apply for a $500 Visa card or Amazon E-card to be used for lodging, food supplies or however needed. 29 7274 11316 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. Epilepsy Awareness Day at Disneyland Family Scholarship. This grant is designed to cover most of the expenses for a family of four to attend EADDL, and is provided through an unrestricted educational grant from an industry partner. 5 3950 FMV 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 169586 0 3000 0 0 0 6903 0 0 0 179489 0 0 0 Veronica Hood Scientific Director 164959 0 500 0 0 0 6619 0 0 0 172078 0 0 0 Substantial Contributor Board Trustee of Organization 384131 Contribution 0 Substanial Contributor Board Trustee of Organization 250000 Contribution 0 Schedule L, Part IV Two current board members also serve on two other 501(c)(3) organizations dedicated to advancing research for Dravet syndrome. Rather than reviewing grant applications through their organizations, they prefer to support grants that our Scientific and Medical Advisory Boards have vetted and approved each year, ensuring that these projects receive the necessary resources to make a meaningful impact in the field. 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 ($150,000), Payroll & Human Resources ($5,620), and Video Production ($2,450).