2023-04-17T14:28:37-07:00 2022-12-31 990 2022-01-01 270924627 DRAVET SYNDROME FOUNDATION INC DRAV 2033921955 PO Box 3026 Cherry Hill NJ 08034 Ted Odlaug President 2033921955 2023-04-17 1 1 11 1 AAL2 X 2022 2023-04-26 12:10:37Z Ted Odlaug PO Box 3026 Cherry Hill NJ 08034 2733455 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. 8 8 7 50 0 0 1437446 1713227 693507 662596 5151 88364 49908 51595 2186012 2515782 444058 693698 0 0 468578 503705 0 0 79018 352687 831436 1265323 2028839 920689 486943 5918927 6249148 592323 488374 5326604 5760774 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 852551 667345 10000 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. 631500 26353 503096 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. 154497 0 149500 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. 0 0 0 1638548 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 1 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 13 0 1 7 1 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 X 8 8 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 SC TN UT VA WI WV X X Jamie Cohen 2033921955 522 Mackin Drive Cherry Hill NJ 08002 Mary Anne Meskis Executive Director 40 0 X 155000 0 0 Veronica Hood Scientific Director 40 0 X 151200 0 0 Jamie Cohen Chief Financial Officer 40 0 X 88560 0 0 Kate Hintz President 1 0 X X 0 0 0 Ted Odlaug PhD Vice President 1 0 X X 0 0 0 Josh Goldman Treasurer 1 0 X X 0 0 0 Tim Wood Past Treasurer 1 0 X X 0 0 0 Ross Nicholas Secretary 1 0 X X 0 0 0 Nathan Batt Trustee 1 0 X 0 0 0 Claire Carey 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 Jenny Tischer Past Trustee 1 0 X 0 0 0 394760 0 0 2 0 1 0 Geben Communication 143 E Main St 200 Columbus OH 43215 Public Relations 177100 0 0 0 741106 0 0 972121 0 1713227 Professional Education & Meetings 813319 149500 149500 0 0 Research Grants 813319 10000 10000 0 0 Patient & Family Services 813319 503096 503096 0 0 0 0 0 0 662596 88364 0 0 88364 0 0 0 0 0 0 0 0 0 0 0 0 269268 741106 217673 51595 0 51595 0 2515782 662596 0 139959 X 500000 500000 21523 21523 172175 172175 243560 37471 177986 28103 223704 173472 22826 27406 36441 16257 15778 4406 3174 3174 5800 5800 219667 179712 39955 7246 6581 332 333 44011 23870 13989 6152 29597 26091 3506 32400 25176 5149 2075 411213 409544 1446 223 5394 1604 1580 2210 Bank & Credit Card Processing Fees 10831 1545 5689 3597 Charity Registration Fees 4635 0 4635 0 Dues & Subscriptions 16002 2061 9428 4513 Other Expenses 41466 41466 0 0 2028839 1638548 311273 79018 479627 560961 947112 447978 48530 54682 6472 61105 11792 4382553 5167263 5918927 6249148 4702 37308 247597 299923 340024 151143 0 0 0 592323 488374 X 5225375 5548913 101229 211861 5326604 5760774 5918927 6249148 486943 -52773 0 0 0 0 X 0 1 X 1 0 X 1459444 1609408 1228571 1437446 1713227 7448096 1459444 1609408 1228571 1437446 1713227 7448096 7448096 523 42174 16250 5151 88364 152462 7600558 0.97994 0.99031 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 X 2352378 -52773 0 0 0 -52773 2405151 0 110631 110631 2515782 2028839 0 0 0 0 0 2028839 0 0 0 2028839 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 the foundation has no uncertain tax positions that would require financial statement recognition. Tax years dating back to 2019 remain open to examination by federal and state authorities. Schedule D, Part XI, Line 4b Change in net assets with donor restrictions 1 Europe (including Iceland and Greenland) 0 0 Grantmaking 155845 North America (including Canada and Mexico, but not the United States) 0 0 Grantmaking 5427 East Asia and the Pacific 0 0 Grantmaking 3403 Sub-Saharan Africa 0 0 Grantmaking 3000 Middle East and North Africa 0 0 Grantmaking 1500 South America 0 0 Grantmaking 1500 South Asia 0 0 Grantmaking 1500 0 0 172175 Europe (including Iceland and Greenland) Use of TMS to Understand In-Vivo the Functional Pathophysiology of Dravet Syndrome and Predict Treatment Response- Dr. Balestrini and Dr. Sisodiya will work together on this collaborative effort to use transcranial magnetic stimulation (TMS) to characterize the brain activity patterns of patients with Dravet syndrome. They will compare changes in TMS to patient genotype, responses to treatments, cognitive abilities, and other common symptoms in Dravet syndrome. They will additionally use TMS to better understand how alterations in brain activity may change over time and with age in Dravet syndrome. 149845 Wire Transfer 1 0 Patient Assistance Grants. The DSF Patient Assistance 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) 1 1500 Wire Transfer Research Grant -Dravet Syndrome International Consensus Project. A core group of pediatric and adult epilepsy specialists, with input from DSF, has identified important clinical issues relating to the diagnosis and management of patients with Dravet syndrome. A international panel consisting of 18-20 experts, consisting of both caregivers as well as neurologists worldwide with particular expertise in managing patients with Dravet syndrome, will be convened. The goal of this study is to utilize a modified Delphi consensus method to establish international best practice treatment guidelines for Clinical presentation and laboratory diagnosis; Antiseizure therapies including medications, dietary, and surgical interventions; Abortive treatments, including status epilepticus management, and transition to adult care; Disease modifying therapies; Comorbidities, SUDEP and mortality; vaccinations. Europe (including Iceland and Greenland) 3 4500 Wire Transfer Patient Assistance Grants. The DSF Patient Assistance 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. East Asia and the Pacific 1 403 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 Research Grant -Dravet Syndrome International Consensus Project. A core group of pediatric and adult epilepsy specialists, with input from DSF, has identified important clinical issues relating to the diagnosis and management of patients with Dravet syndrome. A international panel consisting of 18-20 experts, consisting of both caregivers as well as neurologists worldwide with particular expertise in managing patients with Dravet syndrome, will be convened. The goal of this study is to utilize a modified Delphi consensus method to establish international best practice treatment guidelines for Clinical presentation and laboratory diagnosis; Antiseizure therapies including medications, dietary, and surgical interventions; Abortive treatments, including status epilepticus management, and transition to adult care; Disease modifying therapies; Comorbidities, SUDEP and mortality; vaccinations. East Asia and the Pacific 2 3000 Wire Transfer Research Grant -Dravet Syndrome International Consensus Project. A core group of pediatric and adult epilepsy specialists, with input from DSF, has identified important clinical issues relating to the diagnosis and management of patients with Dravet syndrome. A international panel consisting of 18-20 experts, consisting of both caregivers as well as neurologists worldwide with particular expertise in managing patients with Dravet syndrome, will be convened. The goal of this study is to utilize a modified Delphi consensus method to establish international best practice treatment guidelines for Clinical presentation and laboratory diagnosis; Antiseizure therapies including medications, dietary, and surgical interventions; Abortive treatments, including status epilepticus management, and transition to adult care; Disease modifying therapies; Comorbidities, SUDEP and mortality; vaccinations. Middle East and North Africa 1 1500 Wire Transfer Patient Assistance Grants. The DSF Patient Assistance 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) 3 4427 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. Research Grant -Dravet Syndrome International Consensus Project. A core group of pediatric and adult epilepsy specialists, with input from DSF, has identified important clinical issues relating to the diagnosis and management of patients with Dravet syndrome. A international panel consisting of 18-20 experts, consisting of both caregivers as well as neurologists worldwide with particular expertise in managing patients with Dravet syndrome, will be convened. The goal of this study is to utilize a modified Delphi consensus method to establish international best practice treatment guidelines for Clinical presentation and laboratory diagnosis; Antiseizure therapies including medications, dietary, and surgical interventions; Abortive treatments, including status epilepticus management, and transition to adult care; Disease modifying therapies; Comorbidities, SUDEP and mortality; vaccinations. North America (including Canada and Mexico, but not the United States) 1 1000 Wire Transfer Research Grant -Dravet Syndrome International Consensus Project. A core group of pediatric and adult epilepsy specialists, with input from DSF, has identified important clinical issues relating to the diagnosis and management of patients with Dravet syndrome. A international panel consisting of 18-20 experts, consisting of both caregivers as well as neurologists worldwide with particular expertise in managing patients with Dravet syndrome, will be convened. The goal of this study is to utilize a modified Delphi consensus method to establish international best practice treatment guidelines for Clinical presentation and laboratory diagnosis; Antiseizure therapies including medications, dietary, and surgical interventions; Abortive treatments, including status epilepticus management, and transition to adult care; Disease modifying therapies; Comorbidities, SUDEP and mortality; vaccinations. South America 1 1500 Wire Transfer Research Grant -Dravet Syndrome International Consensus Project. A core group of pediatric and adult epilepsy specialists, with input from DSF, has identified important clinical issues relating to the diagnosis and management of patients with Dravet syndrome. A international panel consisting of 18-20 experts, consisting of both caregivers as well as neurologists worldwide with particular expertise in managing patients with Dravet syndrome, will be convened. The goal of this study is to utilize a modified Delphi consensus method to establish international best practice treatment guidelines for Clinical presentation and laboratory diagnosis; Antiseizure therapies including medications, dietary, and surgical interventions; Abortive treatments, including status epilepticus management, and transition to adult care; Disease modifying therapies; Comorbidities, SUDEP and mortality; vaccinations. South Asia 1 1500 Wire Transfer Research Grant -Dravet Syndrome International Consensus Project. A core group of pediatric and adult epilepsy specialists, with input from DSF, has identified important clinical issues relating to the diagnosis and management of patients with Dravet syndrome. A international panel consisting of 18-20 experts, consisting of both caregivers as well as neurologists worldwide with particular expertise in managing patients with Dravet syndrome, will be convened. The goal of this study is to utilize a modified Delphi consensus method to establish international best practice treatment guidelines for Clinical presentation and laboratory diagnosis; Antiseizure therapies including medications, dietary, and surgical interventions; Abortive treatments, including status epilepticus management, and transition to adult care; Disease modifying therapies; Comorbidities, SUDEP and mortality; vaccinations. Sub-Saharan Africa 1 3000 Wire Transfer 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 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 463720 340333 123387 0 0 26528 25979 2050 16605 Double Down for Dravet Houston 151696 110455 41241 0 0 4763 38000 3599 8897 16 394878 290238 104640 0 0 2336 20147 8585 60184 1010294 741026 269268 0 0 33627 84126 14234 85686 217673 51595 1 The Regents of the University of Michigan 3003 S State St Ann Arbor MI 48109 386006309 501(c)(3) 50000 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. The Ohio State University 1960 Kenny Road Columbus OH 43210 316025986 501(c)(3) 150000 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 700 Rosedale Avenue St Louis MO 63112 430653611 501(c)(3) 150000 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 13001 E 17th Place Room W1124 Aurora CO 80045 846000555 501(c)(3) 150000 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. 4 0 Patient Assistance Grants. The DSF Patient Assistance 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. 27 4015 16008 Fair Market Value 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. Research Grant -Dravet Syndrome International Consensus Project. A core group of pediatric and adult epilepsy specialists, with input from DSF, has identified important clinical issues relating to the diagnosis and management of patients with Dravet syndrome. A international panel consisting of 18-20 experts, consisting of both caregivers as well as neurologists worldwide with particular expertise in managing patients with Dravet syndrome, will be convened. The goal of this study is to utilize a modified Delphi consensus method to establish international best practice treatment guidelines for Clinical presentation and laboratory diagnosis; Antiseizure therapies including medications, dietary, and surgical interventions; Abortive treatments, including status epilepticus management, and transition to adult care; Disease modifying therapies; Comorbidities, SUDEP and mortality; vaccinations. 1 1500 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 Dravet syndrome and related epilepsies. The Scientific Director of DSF reviews the 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 155000 0 0 0 0 0 0 0 0 0 155000 0 0 0 Veronica Hood Scientific Director 151200 0 0 0 0 0 0 0 0 0 151200 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 Public Relations & Marketing ($172,600), Video Production ($28,450) Graphic Design ($6,163), Consulting ($4,250), Publishing ($3,950), Human Resource ($3,792) and Translation Services ($462).