Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F CHARrrY REGISTRATION NUMBER: 1128289 Dravet Syndrome UK Financial Statements 31 January 2021 MCABA Limrted Va Mitchells Cttartered accountants 91-97 Saltergale Chesterfield Derbyshire S40 1LA Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Flnancial Stat•m•nts Year Ended 31 January 2021 Pag•• Tru8tee8' annual report 1to15 lrK1eF￿denl audito¢s report to tho members 16to19 Statement of financial aclivrtk8s (irt￿1n9 Inco￿ and expenditure account} Stslement of flnanclal posltion 21 Notsg to the financial staternents 22to31 Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trust8•8' Annual Report Year Ended 31 January 2021 The Iruslees present their report and the financial ststements of the Charity for the year ended 31 January 2021. Rof•r•nco and admlnl8tratlv• dots118 Reglsterod charlty nam• Dravet Syndrome UK Charlty fegtltratlon number 1128289 Prln¢lp41 offl¢ PO Box 756 Chesterfield Detbyshire S43 9EB Th• trustM8 K Hughes G Wlson-John JDRLloyd N Wlliamson (Appjinted 1 September 20201 Audllor MCABA Limited Ua Mitchells Chartered Ac¢ountsnts & Statutory Auditor 91-97 Saltergale Chesterfield Derbyshire S40 1LA Slructur•, gov•m•nce and man*g•m•nt Gov•rnlng Docum•nt Dravel Syndrome UK 1$ ¢urrentty conslrtuted under the original Declaration of Trust dated 31 January 2009 and supplemental deed dated 18th Juty 2018 Dravet Syndroff* UK is registe￿ as a charity with the Charity Commission Tru•t•ei Selectlon Methods The appointment of Iruslees is govemed by the Declaration of Tnjsl. Trustees must act in the best interests of the charity al all times. Future Iruslees musl be appointed for terffts of office of four years by resolution of the Iruslees and be re-appointed al Ihe end of the lemi of office. All trustees musl be over 18 and there musl be a minimum of 2 and a maximum of 6 truslees. Under the trust deed a Iruslee may be appointed or removed by resolution of the trustees. Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustses, Annual Report (COnlln¢KdJ Year Ended 31 January 2021 Oblectlve8 and actlvltl The objeelive and main activities of the chanty are expressed In the Trust Deed and are the -general purposes of such charitable bodies or for such other purpose as shall be exclusively charitable as the Iruslee$ may from time to bme decide" The trustees must apply the income of the charity in furthering the following objects I'the objects"). To fvnd medical research projects inlo Dravet Syndroffe and other related genet￿ sodium channel epilepsies that will benefft the sufferers of Oravet Syndroffe., To raise awareness and provide educab.on to families and the community about Dravel Syndrome, To support famili&s affected by Dravel Syndrome in the UK Publ1¢ Bfjn•fit The Irusl8es confirm that they have complied wrth Ihe requirements of Section 17 of the Charities Act 2011, having due regard lo the public benefit guidance pu￿lshe&bY Ihe Charity ComMiss￿n for England and Wales. Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustees. Annual Report (contlnu•dJ Year Ended 31 January 2021 A¢hlevemtnts and perfo￿anCe In 2020121 Dravel Syndrome UK {OSUKI, ak*ng with other UK Charit￿$. faced an unprecedented Challenge with the onset of the coronavirus pandemic. The need for support for families living with Dravet Syndrome increased significantly, at the same tsme as our capacity to fundraise was severely restricted by social distancing measures. We are proud lo reFort that DSUK the coronavirus chalbenge. remaining open al all times without recourse lo furlough, and increasing family support lo rreet additional needs arising trom the pandemic. ilsl we saw a 370A drop in community fvndraising. we weie able lo meet this challenge thanks to exceptional COVID-19 funding from the Nalional Lottery Community Fund. Pears FoundalionlDCMS. our corporate sponsor and olhef industy partners. We also benefited from growth in giving via Facebook and a generous individual donation of £25.000. During this reporting period. the Board of Trustees developed and signed off DSUK'S first 5-year strategy. with implementation from 1st February 2021 This ambitious strategy aims lo reach mo families living with Dravel Syndrome. delNer research that puts famity needs first, improve awareness and under$tsnding of the condition amongst professionals. particularty in adult neurology and social seNi¢es, and lo give families the tools and support needed lo assert their nghls. Alongside the above we continued delivering estsblished actNilies for the benefit of families living with Dravel Syndrome, as defined in our charitsble objects and in keeping the following areas.. 1. Support 2. Edu¢alion 3. Research Below the Trustees report on the charity's aclivilies, outputs and oul¢offes against each of these thematic areas. They also report on DSUK'S Income. expenditu￿, reseNes and futu￿ plans. Support In 2020121 DSUK directly supported nearty SOO families living with Dravel Syndrome in the UK, with 41 new families registering with DSUK compared to 26 families registered in 2019120 This support Included the following 1. Coronavirus resource hub 2. Seizure monitor fund 3. 16+ assistanee fund 4. Bereavement fund 5. 1..1 emolionaVpracti¢al support 6. Center Parcs grant 7. Super siblings award Coronavirus Resource Hub In response lo the coronavirus pandemic we undertook a wide range of new activrties lo meet the pressing needs ol families through this crisis. This included." the re-allocation of 40.kn of our Family Support Manager's lime lo providing 1.1 eMot￿nal and praet&g1 support lo families living with Dravet Syndrome, the eslablishmenl of a COVID-19 resource hub with a Q&A Informed by DSUK'S medical advisory board, the launch of a webinar series on the r￿iCal implications of COVID-19 and COVID-19 vaccines on people living with Dravet Syndrome. the commissioning of a film tilled -LTving with Dravet Syndrome in COVID-19 lockdown" watched 1300 times at the lime of wrrting this rewrt, the launch of a COVID-19 family survey whi¢h was accepted for publ￿allOn In the Neurolcgica Scandinavica, $¢xial actrvities with a virtual quvz and more be$￿eS Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trust••s' Annual Report {ctsitlnu6dJ Year Ended 31 January 2021 Achiovements and performance ictsoiinu•dJ Seizure Monitor Fund 47 seizure monitors awarded with 43 families benefiting. Seizure monitors are vital to alam families to seizures $0 effergency treatment can be given quickly enough. Unfortunately, these mnilors are not routinely frjnded by health or social care. DSUK offers a non-means tested seizure mnilor fund. aiming to reduce the risk of brain damage and death and improve the quality of lile and life chan¢es for people wrth Dravet Syndrome. In this reporting period DSUK awarded 47 setzure ￿￿nItOrS, a si9nthcant increase on the 32 seizure monrtors In the previous year. These awafds Included.. 0 11 Pulse Oximeler Machines 0 10 MedPage Epileptic Seizure M￿11015 0 13 Baby Pixel Monitors 0 13 Fingertip Pulse Oximelefs During this ￿PortIng period we were extremety gralefvl lo receive a £10k grant from the DM Thomas Foundation for Young People for 14 Pulse Oximelers. which DSUK purchased In the Teporting period. We were also pleased lo start offering families an additional monitor. called the Nighlwalch, lo choose from following extensive parenvcarer leslin9. The Nighlwalch monitor consists ofa comfortable wireles5 armband that closely monitors heart rale and mots.on while the wearer is lying In bed ￿en Nighlwalch detects a potentially severe seizure. a waming is transmitted to a caregiver via a wireless signal from the arm module lo the correspondin9 base station alerting the parent or caref. As in previous years famity feedback was overwhelmingty posib've and includes the following quotes". 'W8 recently r8guested if il was possible lo gel 8 pulse oximeter for our daughter who h8s Dr8vel Syndrome. We have just re¢eivad 8 pulse oximel&r(w6 ¢8nnot il was so quickj. We are honastly losl for words and cannot Ih8nk you and the ch8nty enough for your support in supplying this piece of vital equipment. This amazing piec8 of equipment will m8k8 8 huge diff8rence to h8lping monitor through the night and also when she has seizures gs we c8n 8ccural&ly 18St herpulse rate and oxygen levels. The quality of the deV￿e is also g surprise 91 how good it is. as we know how expensiv8 they ar&. Please a¢¢ept our heartfelt thanks from our family lor your support". 'The nIgh￿atCh is working as l expected. I really like it and now ¢￿dact8￿￿ can sleep in his own bed wh￿h l am glad I can now give his new baby sibling more lime. Thanks a lot. the nwhlwatch has made my nighttime so much e8sffjrf. 16+ Assistance Fund 31 assistance grants for people with Dravel aged 16+ awarded with 31 families benefitting. Transitioning to adult services. when a young person with Dravet Syndrome reaches the age of 16 and beyond. encompasses significant changes in the organisalion of care. Families consistently tell us of their Challenges accessing fvnding for this support DSUK offers a non-￿tanS tested 16+ Assistance Fund Families can apply for any Items of equiprrent or assistance that will improve the life for the person aged 16+ with Dravel Syndrome. In making this award DSUK aims to improve the quality of life and life chances for people living with Dravel Syndrome and reduce the financial burden on families, who would othemise need lo pay for these rtems themselves. Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustses. Annual R6POrt (conllnu8dJ Year Ended 31 January 2021 Achlevernents and perfomiance (conllnuo In this reporting penod DSUK made 31 awards, a Signrf￿ant increase on the 13 awards made in the previous year. This increased demand was in large part driven by increased need arising from COVI 19, as people applied for IT and mobility equipment to ¢ompensate for the loss of nomial daily aclivilies. With thanks to £5k of grant fvnding from the Pears FoundationlDCMS we were able to meet part of this increased demand. with ftjnding awarded for young people aged 16 10 25 years living in England. Overall 16+ grants were awarded as follows. 0 8 x IT equipment le.g. iPadsl 0 8 x Indoor lurnituie le.g. suitsble Chairs) 0 4 x Mobility equipment 0 3 x Home cooling systems 0 2 x Garden items le g. sensory garden) 06xOlher In this reporting per￿ we've had a s￿n￿￿nI aft￿Unt of posib've feedback including the following." 'Il was v8ry 8xcrfing to r8c8we the K)nderful sensory equipment for Irom Drnv&t UK. W& send our sincere thanks lo everyone lor thes8 amazing ilems made possibl8 by the 16+ Assistance Fund. has been shielding ￿th us. her mum and dad sinc8 March when the day c8ntrg she attended clos8d due lo coronavirus. wilh these lovely and very stimulating sensory it8ms" "Just wanted to thank you lor the 16+ assistance grant you gave us for is 8lre8dy getting so much enjoyment from the screen and proJ8clor. Once again thank you for enabling us lo provide have asked me to thank you lor theirlovelygrts. the trophies ￿allY didpuf a smile on their faces sometimes words aren t enough but these gifts say rt all. It can be $0 drfticutt for the siblings of our warriors and they are all Just amazing. A massrrfe thank you." "Thank you dravel syndrome for my lovely grtsl It means so much to me. I can not thank you enough forpicking me as a winner. I love my sister and she is my dravet warrior. Thank you again. Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustee3' Annual Report (contsnuedj Year Ended 31 January 2021 Achievements and perfornlance (c¢￿Ilnu8dJ Closed Facebook Group 372 people tenefitted from being members of our closed Facet4Jok Group Every DSUK registered family is invited to join our closed Facebcrt)k Group. This group is a safe moderated space for families to ask questions. share experiences and access support from other Dravel families. In managing this group DSUK aims lo improve knowledge and understanding of Dravel Syndrome as well as ieducing feelings of social Isolation and loneliness. In 2020121 DSUK saw the numter of members grow from 349 10 372 peop￿. On average the group has 4 10 5 new posts a day covering a wide range of topics Including discussion on". setture types. sevzure medication, other therapies le.g. physiol. benefits and social care. EHCPS and $pecial schools, residential caie options and mre besides. The group also provides a safe space for families lo Sha the highs and lows ol ¢aring for someone with Dfavel, enabling people lo access peer support. Education During 2021121. DSUK contributed lo improving awareness and unde￿landIng of Dravel Syndrom8 through the following educational aclivilies. Marketing and Communications Strategy This year saw a $tep4hange in DSUK'S approach In March 2021, Claire Eldred was appointed as Head of Marketing and Communi¢alions with a remit to expand the reach of DSUK'S communications to key audiences, InclLbding families living wilh Dravet Syndrome, medical professionals and th8 broader community of supporters and sponsors. With this appoinlmenl. we identified some key educational priorities around which lo focus our communications effort during 202012021. These Included.. The impact of COVIO-19 - with infomiation and guidance for families and healthcare professionals via our website, social media plarfoms and webinars We also undertook the only UK survey lo examine the understand the risks, impact and outcome of COVID-19 in people affected by Oravet Syndiome, which is now published in the peer-revthv journal, Acta Neurologi￿ Standinav￿a New and emerging treatments for Dravel Syndrome including SLbbmitting leslimonies and participating in meetings with NHS appraisal committees for the use of cannabidiol in Seolland and fenfluramine in England and Wales. The genetics of Dravel Syndrome we identified some Information gaps around genetics in our educational materials, and also some common misconcepts.ons {e g. a lack of awareness that Dravel Syndrome is a clinical rather than genetic diagnosis). and addre5$ed these via our website. social media and a webinar dedicated to this topic. Continuing lo impfove diagnosis- although improving. especialty among children. there is still much to achieve in terrr￿ of improving diagnosis and Irealment outcomes. Consistently throughout 202012021. we raised awareness on signs of Dravet Syndrome. the importance of earty diagnosis and t)enefit5 of genetsc lesting al any age. In addition lo implementing these educatsonal priorrties. we developed a comprehensive 5-year marketing and communications plan. with ath"¥ib"es aligned to DSUK'S overall strategy. Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustees, Annual Report (confrnwdj Year Ended 31 January 2021 Achlevements and perfomian¢e {¢tsntinu•dJ Educational campaigns Internat￿nal or national awareness dayshveeks offer DSUK opportunities to communicate educational priorities. especially with regard to impioving diagnosis of Dravet Syndrome. During 202012021. we leveraged three events in paiticular lo drNe awareness campaigns". Rare Diseases Day (February) - 'Paige's Story.. DSUK'S short film about a family living with Dravet Syndrome was shortlisled for the People's Vote award for the Rare Diseases Film Fesb'val. Although 'Paige's Story. did not win top pnze. our sccial media campaign encouraging people to vole and share the video was very successful, reaching more than 111.250 people with messages about Dravel Syndrome. National Epilepsy Awareness Week {Mayl the theme in 2020 was #morethanseizures DSUK shared facts about Dravet Syndrome throughout the week that reached nearly 29.000 people, helping lo educate the epilepsy ¢ommunty. as well as broader audiences, atoul signs of Dravel Syndrome. International Oravel Syndrome Awareness Day {June) our key educab'onal campaign for 202012021 involved a series of activities tsking place on this global day dedicated to Dravel Syndrome. Our #DravelTogelher video. highlighting DSUK'S support for families during the pandemic, was watched over 640 times on YouTube, reached more Ihan 14.500 people on social media. Our 'Five Facts, post reached 58,741 and overall on sccial media we reached just under 1CNJ.000 people wtth educational messages about Dravel Syndrome. Webinars Five educational webinars were held benefitting nearly 2.0(Ki parentslcarers who attended or watched recorded version on our YouTube channel Dravel Syndrome in the COVID-19 pandemic {April 20201 with Professor Helen Cross Dravel Syndrome & Family Wellness during COVID-19 (April 20201 with Neil Wlliamson Dravel Syndrome during COVID-19 - Focus on Adults (April 20201 with Professor Sanjay Sisodiya and Fiona Scolding QC Understanding the Genetics of Dravet Syndrome {Septemt*r 20201 with Dr Andreas Brunklaus COVID-19 and Dravet Syndrome.. Latest upjales induding Vaccines (January 20211 wrth Professor Helen Cross and Professor Sanjay Sisodiya Leaflets and Video Projects In 2021 we initiated ￿ major educatKsnal initiabves.. Updating DSUK'S educabonal kaflels including the Family Guide and HCP Diagnosis G￿￿e lo bring these up to dale with the latest knowledge about Dravel Syndrome. With the Family Guide in particular, this involved significantly extending the seope of the original leaflet (created In 20131. The leaflets are currently in draft form with plans to launch in the latter part of 2021 Planning for a series of educational videos to educate and engage audiences in different aspects of living with Dravet Syndrome, including short films to raise awareness le.g. around Intemalional Dravet Syndrome Awareness Dayl. case Studies featuring children and adults with Dravet Syndrome and talking heads videos with our Medical Advisory Board. Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustees. Annual Report (continued) Year Ended 31 January 2021 Achlevements and performan¢t f¢ontsnv¢d) Website In 2020-2021. more than 22,500 people visited our website and benefited from its educational content. 87Yo of these were new visitors lo the website. Ovetall. the most viewed pages lin addition to the home pagel were 'Whal is Dravet Syndrome, 15.000+ views). 'Aboul Dravet Syndrome., 14.000+ views). 'Dravel Journeys'l4.000+ view51 and 'COWD-19 Advice and Guidance. 13.500+ view51. Key updates during this perKJd included.. COVID-19 hub containing advKe and guKlance about COVID-19. famity wellness during the pandemic and infomialion about grants and other support servi¢es provKled by DSUK during the pandemic13500+ viewsl A 'Genetics of Dravet Syndrome. online resou￿ (870+ views) An expansion to the 'Sibling5' secb.on of the website wilh additional ad¥￿e and case studies 1285 views) Updates and new case studies added lo the'Dravet Joumeys. secb'on. shanng real-life experiences from families living with Dravel Syndrome14000+ views) Social media Social media is an important plaffoffn for raising awareness and understanding of Dravet Syndrome. DSUK has an active S￿al media presence. posbng on platfom$ behveen 3-5 times per week on a variety of topics including our educational priOrit￿s, famity case StUd￿S, fundraising stories and other news relevant lo the Dravet Syndrome communty. During 2020-2021, DSUK'S posts across our four social media platforms {Facebtsok. Instagram. Twitter and Linkedlnl had a combined overall reach of nearty one fflillion and a gain of more than 1.000 new followers since January 2020. Our mosl impaclful posts during 2020-2021 corresponded to otjr educational priorities. with posts on COVID-19 guidance. treatments advances. the genetics of Dravet Syndrome and improving diagnosis gamering the greatest reach and engagement across largel aud￿ nces. Welcome packs 41 families benefited from receiving DSUK welcome pa¢ks. Every Dravel family that registers with DSUK receives a wekome pack contsining educational leaflets, including our 68 page"Family Gu￿e to Dravet Syndrome" This book eontains medical informabon on seizures, as well as the C￿r￿)rtsid condrtions that many Dravet pab.ents face. It also contains Infomialion on schooling, respite and many other Issues faced by families who are caring for someone diagnosed with the condition including transit￿n to adullhocxy. In 2020121 we sent out 41 free welcome packs lo UK parentslcafers with a confirmed diagnosis of Dravet Syndrome. Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustees. Annual Report (continued) Year Ended 31 January 2021 Achlevements •nd performance fconlinu•d) External conferences 2 major conlefences attended, reaching paediatncians, neurologists and specialist nurses. Every year DSUK attends the major UK and inlemational paedialnc. neurology and epilepsy conferences to raise awareness and improve understanding of Dravel Syndrome among51 paedialricians. neurologists and specialist nurses Due lo the coronavirus pandemic. many congresses that DSUK would usually attend were cancelled or changed to a virtual event. The tsvo major congresses we attended were the virtual AES (Amefican Epilepsy Society) meeting in December 2020 and the virtual BPNA IBrilish Paediatnc Neufobgy Associal￿nI meeting in January 2021. AES- The conference featured 60 studies relevant to Dravel Syndrome. We attended and reviewed the most relevant scientific sessions and presentations, updating our key educational messages accordingly. BPNA- As well as attending key S¢￿At￿￿ sessions. DSUK hosted a virtual stand with educabonal messages around the diagnosis of Dravel Syndrome and we Interacted with 213 clinicians. Our Chair of Trustees. Galla Wlson-John presented al a symposium alon9side our Medical Advisory Board member5. Professor Helen Cross and Dr Andreas Bnjnklaus. We also look part in a meeting with 15 other charities lo discuss key issues in chiklhood neurology and making sure the patient voice is heard. In addition, we live-tsveeled from the event and published a wrap-up blog post on oui website, reaching just under 10,000 people with educational messages from the ¢onferen¢e. Medical Advisory Board All of DSUK'S educational activitie$ infomed by the charity's Medical Advisory 8oard Chal￿d by Profe$$or Helen Cross of Great Ormond Street Hospital In this reporting perKKI we were extremely pleased lo announce three new members to the Board with the aim of addin9 experience In general adult neurology and neuropsychology as well of ensuring continuity In having a nursing perspective with Neil Williamson stepping back from ltte Medical Advisory Board lo become a DSUK Trustee. As an outcome we made the following apFoinlmenls in January 2021. Amanda Tomalin, Paediatric Epilepsy Clinical Nurse Specialist, Evelina". Dr Julia Aram, Consultant Neurologist. Brighton and Sussex. and Professor Mike Kerr, Retired Clinical Professor, Dept. of PSYchoty￿al Medicine and Clinical Neurosciences, Cardiff. Research In 2020121 DSUK spent £88.130 on novel research into Dravet Syndrome. This included providing funding for novel gene therapy as described below. In this reporting period DSUK participated in a research call with Great Omond Street Hospital Charity and Sparks Charity. As an outcome ftjnding tolalling £248,000 was awarded lo a novel gene therapy project led by Dr Raj Karda. Gene Iherapy is a technology that aims lo deliver gene elements lo augment or modulate the expression of a pat￿nts mutsled gene. to ameliorate disease pathology. One of the most common ways lo do this is lo use a vehicle (known as a -vector'l lo deliver therapeutic genes lo cells. A major barr¢er to progressing gene therapy for Dravet Syndrome Is that SCN1A. as a very large gene, is loo big lo deliver via a standard, single vector. The ftjnded project identified an innovative solution lo this barrier, using a pioneenng gene editing technology (known as CRISPRI lo split the SCN1A gene in half and use ts¥o vectors lo delNer therapy Irealmenl lo a mouse model of Dravet Syndrome. Excitingly. the research showed rt is possib￿ lo split SCN1A and recombine it within the mouse model. Although the gene therapy itself did not prove effective in treatsng the mice, the project made important progress in understanding the ￿havIour and expie5sion of SCN1A, and DSUK'S funding was an invaluable springboard to future researeh. enabling the team to further refine their approach via ongoing. follow-up research projects. 10- Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustses. Annual Report fconllftu•dJ Year Ended 31 January 2021 Achlevements and pertomianco (conllftu COVID-19 and Dravet Syndron Al the oulsel of the pandemie DSUK led an initi.ative with Professor Sanjay Sisodtya and Dr Simona Baleslrini lo gather a 5napshol of the impacl of Ihe virus on people with Dravel Syndrome to inform ca and treatment. DSUK initiated a suNey with familEs. whKh led to feport being produced by Professor Sisodiya and Dr 8aleslrini that was published on the DSUK website. 116 families responded lo the survey of which 74% were in res￿Cl of children and 26% in respect of adults. Key findings from the survey include.. 'Extremely vulnerable, status for risk of severe forn￿ of COVIO-19 was given lo 43% people with Dravet Syndrome by a GP or neurologist Even if not deemed 'extremely vulnerable,. famil￿ adhered to shielding. with 91 % of respondents shielding their childladull al the lamily home during Ictkdown Symptoms compatible wrth COVID-19 were re[￿ed in 19% of indNiduals {with no significant difference be￿een children and adults with Dravel Syndrorrel Among symptomatic individuals, onty 4 had a Iswab} lest, none of which was positNe', one person had antibody testing IbLrt not swab 18sting}, whKh was positsve for COVID-19 There We￿ no deaths and, in most ¢ases, the outcome of infe¢lion was 'bensgn' lonly 50A required hospilalisation due to severty of symptoms and all r￿0vered) Seizure worsening was reported lincreased seizure frequency or duration or both) in 50% of those who developed possible or Probab￿ COVID-19 symptoms The presence of comrbidibe5. including susceplibilty to respiratory infe¢lion$, swallowing difficulties, and spinal abnomialilies. was not signif￿antlY assoc￿led with the presentation of COVID- 19 symplorns Global call for Dravel Syndrome research In 2020121 for Ihe ffiisl lime DSUK participated in a global research call led by the Associazione Gruppo Famiglie Dravel IGFDI, an Italian Dravet Syndrome pabenl advocacy charity dedicated to supporting the highe$l quality ba$1¢ or ¢lini¢al resear¢h on Dravel Syndrome. This eall solieils innovative explorative proje¢ls that are not ¢urrenlly funded by other agencies became of their preliminary nature. Dravet Syndrome charities globally committed É125,000 in totsl lo this call, of which DSUK committed £20,000. Fourteen research proposals were shortlisted and al the time of writing this report. these short-lisled projects are being assessed. 11 Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustses. Annual Report (coftlinued) Year Ended 31 January 2021 Flnanclal revlew Incoming Resources In 2020121 DSUK received £345,071 in incnrM from the following sources £136,238 £119,343 £55.000 £26,225 £8,265 Communty fundraising Industry grants Corporate sponsorship Giants from TruslslFoundalvJns Income generation Historically community fvndraising has been an important source of incotrt for DSUK, wrth £209,418 raised in 2019120. With the onset of the pandemic il was not possible for the nom)al community fundraising activiltes lo take place such as marathons, treks elc. meaning only £136.238 was secured. ilsl DSUK saw growth in giving via Facebook le.g birthday fvndraisersl this did not compensate for loss of income via JuslGiving. which typically accounls for in-person challenge events. In response DSUK sought to drive virtual fvndraising campaign5 al key points of the year including Intemational Dravel Syndrome Awareness Month. International Epilepsy and Tuesday Giving over Christmas Despite the sharp drop in income from community fundraising OSUK was able to hold up ils income by increasing income from other $our￿s. Grants from the National Lottery, Pears/DMCS and DM Thomas Foundabon for Young People conlribuled to growth in granl income from £11.689 In 2019120 to £26,225 in 2020121. Additional support also came in thè form of a one-off grant from XTX Markets of £25,000 in addition lo £30,000 that the company generously gives lo DSUK as a corporate sponsor. a £25.000 exceptional payment from an indiv￿ual donor. growth in online shop sales following investment in new stock lincludin9 branded face masks and leisure wear) and industry grants from GW Pharma, Zogenix. Encoded and Biocodex. Outgoing Resources In 2020121 DSUK spent £305,812 delivering its charitable objeth'ves. During this reporting penc*J costs have been i￿Uffed in respect of the following.. o Séizure monitor$. 16+ A$$i$lan¢• Fund and 8èr•avomènl Grant o Awareness raising actwities le.g. DSUK educational webinars) o Awareness raising materials le.g DSUK educational leafietsl o DSUK merchandise for fundraising events & shop sales o Staff costs with 4 people12.93 FTEI paKI for 117 hou￿ as al 31st January 2021. 12- Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustses. Annual Report {conknu¢dJ Year Ended 31 January 2021 Finan¢lal revlew {¢¢NTrllnu Reserves Policy Dravel Syndrome UK is required to ensure that free are available in each financial year lo meet any reasonably foreseeable contingency. The Iruslees have determined that 'free' reserves should idealty be al least six months of normal operating expenditure. which is considered by the tnjslees lo amount lo around £232,000 based on estimated expenditure ft)r 2021122. At 31 January 2021. the unrestncted reserves of the charity amounted to £386,468. of which £95,663 has been designated by the trustees fof research purposes and for educational materials. leaving free reserves of £290.805 at that date. compared lo £263,243 at the previous year*nd date 11 is anticipated that the desKJnated fvnds balances relating lo educational materials and research as at 31 January 2021 will be fulty expended by 31 January 2022. Looking ahead to 2021122. the Iruslees will be kun¢hing DSUK'$ S-year Strategy for 2021 10 2026. In order to deliver this strategy, the Trustees will be investing al least £45,IX)O of available free reserves in order lo lay the foundations for organisational growth. 13- Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustees, Annual Report{eontinued) Year Ended 31 January 2021 Plans for future pgriods In this reporting penc4Y the Board of Tnjstees approved DSUK'S first five-year strategy for 202110 2026, which was launched in February 2021 This strategy aims to reach mre families. to deliver research that puts family needs first. to improve awareness and understsnding amongst professionals. partieularfy in adutt nevrology and social services. and to give families the Iwls and support needed to assert their rights. Underpinning the stralegy are four overarching objectives 1. Every Famity Matters Every UK family living with Dravet Syndrome will be aware of DS UK and the support available, be enabled lo access this support as required, and know that all acbvib"e5 and research are driven by the things that matter most to them. 2. Leaders in the Field DSUK will lead the conversabon atx)ul Dravet Syndrome in the UK, making the best possible use of its research ftjnds, collaborating intemabonalty as opportunities arise. and developing an authoritsb've global voice. 3. Support for Professionals We will seek lo broaden the range of heahh and sccial care professionals wrth an improved understanding of Dravel Syndrome. enabling eadier diagnosis and providing accessible pathways to the best possible treatment and care for all ages. 4. Empowerment of Families Families living with Dravet Syndromewill know and understsnd their rights and feel empowered to assert Ihese rights to gel the support they need. We have come a long way supporting children and adutts with Dravel Syndrome but there is further lo go. Families are still waiting too long for a diagnosis. We do not know enough about the ¢omorbidilies of Dravel Syndrome and the SFeclrum nature of the condition. Transits"on into adult health care service5 remains challenging and many families struggle lo access Ihe statutory support they are entitled lo. We know we have given ourselves a lot to do bul we believe this is the right b.me lo move forward and. more mportanlly, this is the right way for us to support everyone who lives with Dravet Syndrome and all ils challenges. With our families behind us and a strong and eommrtted team of staff. trust￿ and medical advisors we are ready and excited to gel on wrth this woth. To deliver this strategy we will be putting robust plans in place, particularty lo secure the resources needed to achieve our ambitions while also being responsive lo the Uncertainl￿S of these b'mes. In 2021r22 we will be designating our free reserves to enable this growth and as such will have an income to expenditure deficrt as we bring our reserves in line with our reserves policy. In taking this approach we wll be better placed lo grow income from trusts and foundations from 2022123 onwards as many donors precluding applications from charitses in excess of their reserves policy. There is so much to be hopeftjl for as we Icrt)k ahead. and the next 5 years is just the next milestone, not the end of the road. We are really excrted by the possibilities of the coming years There are gene therapies on the horyzon, and other new treatments in developn*nl, as well as all the work we are planning with this new strategy. We look forward with confidence, excitement and hope that DSUK can and will make a difference for every famity living wth Dravet Syndrome in the UK. -14- Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Trustees. Annual Report Ictyiiinu•dJ Year Ended 31 January 2021 Trustees. responslbllllies stslement The Iruslees afe responsible for prepanng the trustees, report and the financial statements in accordance with applicable law and United Kingdom Accounbng Stsndards (Unrted Kingdom Generally Accepted Accountsng Pracb¢e) The law applicable lo charities in England and Wale5 requires the charity tfU5tees lo prepare financial ststemenls for each year which give a true and fair view of the state of affairs of the chanty and of the incoming resources and applution of ￿$OUrCes, of the charity for that perico. In preparing these financial statements, the trustees are required io". select suitable accounting polic￿$ and then appty them conSisten￿y.' observe the methods and principles in the applKable Charities SORP., make judgments and a¢¢ounting eslimales that are reasonable and pwdent., p￿pare the fina￿la1 stateff*nts on the going concem basis unless rt is inappropnate lo presume that the charity will continue in business. The Iruslees are responsible for keeping adequate accounting records that are sufficient lo show and explain the charity's transactions and disclose wrth reasonable accuracy al any bme the financial position of the chanty and enable them lo ensure that the financial statements comply with the Charities Act 2011, the applicable Charities {A¢¢ounls and Reports) Regulations. and the provisions ol the Trusl Oeed. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable Steps for the prevention and detection of fraud and other irregularities. The trustees, annual report was approved on 9 Juty 2021 and signed on behalf of the board of Iruslees K Hughes Trustee -1s- Docusign Envelope ID." DFE188C8467E4097-AEDF-2F9302D1201F Dravet Syndrome UK Independent Auditor's Report to the Members of Dravet Syndrome UK Year Ended 31 January 2021 Oplnlon We have audited the financial statements of Dravet Syndrome UK Ithe 'charity'l for the year ended 31 January 2021 which comprise the Statement of financial activities lincorporaling Incorne and expenditure account). ststernent of financial posit￿n and the related notes, including a summary of significant a¢counling policies The financial reForting framework that has been applied In their preparat￿n 15 applicable law and United Kingdom Accounting Standards, including FRS 102 The Finan¢ial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practs"cel. In our opinion the financial statements. give a true and fairview of the state ofthe charity's affairs as at 31 January 2021 and of ils incoming resources and appliealion of resources, including ils income and expenditure. for the year then ended, have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Pract￿e., have been prepared in accordance with the requirernents of th& chan1￿5 A¢t 2011. B•81• for oplnlon We conducted our audit in ac￿rdanCe with Internatsonal Standards on Auditsng IUKI IISAS IUKII and applicable law. Our re5pon5ibilities under those standards are fvrther described In the audil0rf5 respon51bililie5 for the audit of the financial stateff*nls sectson of oui report. We are independent of the charity In accordance with the ethical requirements that afe relevant lo our audit ol the financial statements In the UK, including the FRC'S Ethical Standard, and the provisions available for small enlilies. in the circumstances sel out below. and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe Ihal the audit evKlence we have obtained is sufficient and appropiiate lo provide a basis for oui opinion. In common with many other charities we use our auditors to assist in the preparabon of the slalulory financial stalemenls. We also engage our audrtors lo provide bookkeeping and payroll preparation services. Conclu8lon8 r•l•tlng to golng ¢on¢•rn In auditing the financial $tatemen15. we have concluded that the Iruslees. use of the going Concern basis of accounting in the pffjparalion of the financial statements is appropnate. Based on the work we have performed. we have not kJentyfied any matenal un¢ertainlie$ relating to events or conditions that, individualty or ¢olle¢tively. may cast Significant doubl on the ¢harity's ability to continue as a going concern for a period of at least hvelve months from when the financial slalemenls are authorised for issue Our responsibilities and the responsibilrties of the trustees with respect lo going ¢on¢em ar8 described in the relevant sections of this report. -16- Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Independent Auditor's Report to the Members of Dravet Syndrome UK (¢oniints¢dJ Year Ended 31 January 2021 Other Infornlatlon The other infofmabon ¢omwises the infomiats'on included in the annual report, other than the financial statements and our auditor's report thereon. The trustees are responsible for the other infomation. Our opinion on the financial statements does not cover the othei information and. except lo the extent otherwise explicitty stated in our report. we do not express any fom of assurance conclusion Ihereon. In ¢onnection wrth our audtt of the financial ststements, our resp)nsibility is lo read the other information and. in doing $0, ¢onsider whether the other infonnabon is malerialty inconsistent with the financial statements or our knowledge obtsined in the audit or othemise appears to be materialty misstated. If we identify such material Inconsistencies or apparent material Misstatements, we are required to determine whether there is a material misstslement in the financial statements or a material misstalemenl of the other information. If. based on the work we have performed. we conclude that there is a material misstatement of this other Information, we are required to report that faet. We have nothing lo rewrt in this regard. Matters on which we are required to report by exception In the light of the knowledge and understsnding of the charity and its environment obtained in the course of the audit, we have not identified material misstatements in the tTUStees' report. We have nothing to report in ￿pect of the following matters in relation to which the Charities Act 2011 Tequires us to report to you if, in our Opin￿n.. the information given in the trustees. report is inconsistent in any matenal respect with the financial ststements". or adequate accounting records have not been kept." or the financial statements are not in agreerrEnt with the aceounb.ng records and retums," Of we have not received all the informakn.on and explanations we require for our audit. Responslbilities of trustees As explained more fulty in the trustees, responsibilities Statement, the trustees are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for Such Internal control as the trustees determine is necessary lo enable the preparation of fi'nancial statements that are free from material misstaterrent. whether due to fraud or error. In preparing the financial statements. the trustees are responsible for assessing the charity's ability lo Continue a$ a going eoncern. diselosing. as applicable. matters related lo going concern and using the going eoneern basis of accoLTrnting unless the trustees either intend lo liquidate the charity or lo cease operations, or have no realislK altemalNe but lo do so. 17- Docusign Envelope ID." DFE188C8487E4097-AEDF-2F9302D1201F Dravet Syndrome UK Independent Auditor's Report to the Members of Dravet Syndrome UK (contlnuots) Year Ended 31 January 2021 Audltorf8 responslbilitles for the audlt of the flnanclal Statements Our objectives are lo obtain reasonable assurance about whether the financial ststements as a whol8 are free from material mis51atemenl. whether due lo fraud or error, and lo issue an auditor's report that includes our opinion. Reasonable assurance is a high level of assurance but is not a guarantee that an audit conducted in accofdance with ISAS IUKI will aNvays detect a material misslalemenl when il exists. Misstatements can arise from fraud or error and a￿ Cons￿ered material rf. individually or in the aggregate. they Could reasonably be expected to Influence the economic decisions of users taken on the basis of these financial stalemenls. A fvrther descript￿n of our responsibilities for the audtt of the financial statements is located on the Financial Reporting Council's website at https.. www.frc.Ofg.uklauditorsresponsibililies. This description forms part of our audilorfs report. Audltor'8 rn8pon8lbllitles for det•cllng Irregularlto￿, Includlng fraud The objectives of our audit are to identify and assess the risks of material misstslement of the financial stslemenls due lo fraud and error, lo obtain sufficient appropriate audit evidence regarding the assessed risks of material misslatemenl due lo fraud and error.. and lo respond appropriately lo those risks Owing to the inherent limitations of an audit, there is an unavoidable nsk that material misslatemenls in the financial stslemenls may not be delecled. even though the audit is property planned and performed in accordance with the ISAS (UK). In identifying and assessing risks of material misstatement in respect of irregularitses, including fraud and non