## NAITBABIES ANNUAL REPORT 2022 News and events from 1 June 2021 – 31 May 2022 **Fetal and neonatal alloimmune thrombocytopenia - FNAIT** ## **Reference and administrative details of the Charity and its Trustees** Charity name: Naitbabies Other names we are known by: NAIT babies Charity Commission reg. number: 1161698 Principle address: 13 Redinnick Terrace Penzance Cornwall, TR18 4HR, England Members of the CIO are also the trustees who administer the charity. Thea Palmer Chair Michelle Minshall Treasurer Stacy Corke Trustee Andrea Palmer Trustee **Treasurer** : Michelle Minshall Minshall & Co. Bridge House Nantwich Cheshire, CW5 7JX **Independent examiner:** Mr. Neill Hallam FCCA Crane and Johnston Chartered Certified Accountants 11 Alverton Terrace Penzance Cornwall, TR18 4JH **Bankers** : HSBC, 1 Green Market Penzance Cornwall, TR18 2SD England **Type of governing document** : Constitution **How the charity is constituted** : Charitable Incorporated Organisation (CIO) Foundation. **Date of governing document** : 15 May 2015 **Website** : https://www.naitbabies.org 1 Charitable Incorporated Organisation (Foundation}. Registered in England and Wales No.1161698. ## **Naitbabies is a member of:** Genetic Alliance UK Rare Disease UK Genetic Disorders Charities & Patient Group Network Cambridge Rare Disease Network ## **Our Mission Statement** Our mission is to be a strong voice for parents, children and families who have been diagnosed with or suspect that they may have the severe bleeding disorder Fetal and neonatal alloimmune thrombocytopenia – FNAIT. ## **Objectives and Activities** ## **The objects of the charity as set out in the CIO’s constitution are:** The relief of sickness and the preservation and protection of good health of parents, children and their families and carers who have or are affected by the severe bleeding disorder Fetal and neonatal alloimmune thrombocytopenia – FNAIT; in particular by the provision of support, advocacy and practical assistance as the trustees shall think fit; To carry out, or to provide funds to support research into FNAIT, its causes, treatment and prevention and publish the useful results of such research; and To advance the education of the public, in particular those involved in the diagnosis, treatment and care of those suffering from FNAIT. ## **Summary of the main activities undertaken for the public benefit in relation to these** ## **objects.** Naitbabies is a small Charitable Incorporated Organisation run by families whose children have been affected by the severe bleeding disorder Foetal and neonatal alloimmune thrombocytopenia –FNAIT. Registered in the UK Naitbabies is the only organisation for this disorder. We provide information to the public in general. We run an international FNAIT Parents Support Group and advocate for parents worldwide. To date we have over 1,200 members. We support research into FNAIT and have contact with an expert medical panel of doctors who have a special interest in this devastating disease. 2 Charitable Incorporated Organisation (Foundation}. Registered in England and Wales No.1161698. ## **What is FNAIT?** Fetal and neonatal alloimmune thrombocytopenia results from incompatibility between mother and baby for platelet-specific antigens that have been inherited paternally. The maternal immune response may make antibodies to destroy her baby’s platelets which she sees as foreign. Platelet destruction can cause bleeding into major organs such as the stomach, spinal cord and lungs. The most feared is bleeding into the brain known as intracranial haemorrhage - ICH. Babies are at serious risk of death or permanent neurological impairment such as epilepsy, cortical blindness, cerebral palsy, precocious puberty, motor and cognitive delays and sensory processing disorders. NAIT is seen as the platelet equivalent of the red blood cell disease Hemolytic Disease of the Fetus and Newborn - HDFN more commonly known as Rhesus disease. Routine antenatal care has included screening of all expectant mothers for HDFN since the early 1970’s. No country carries out antenatal screening for NAIT although it has been known about since the 1950’s and is very well documented. Much rarer diseases are screened for. Treatment is available for mothers who have developed antibodies against their unborn baby’s platelets and the success rate is high. If subsequent pregnancies are not treated they may also be at risk. 3 Charitable Incorporated Organisation (Foundation}. Registered in England and Wales No.1161698. ## **Highlights from our FNAIT journey through the last year:** ## **June 2021** One of our lovely volunteers donating blood for Rallybio, the Connecticut based life science Company’s FNAIT Study. ## **July** Exciting milestone!! Rallybio Announces Clinical Proof of Concept for RLYB211, an Anti-HPA-1a Antibody for the Prevention of Fetal and Neonatal Alloimmune Thrombocytopenia (FNAIT) was presented on Monday 12 July, at the ISTH2021 International Society on Thrombosis and Hemostasis 2021 Virtual Congress. See the Rallybio conference poster below. 4 Charitable Incorporated Organisation (Foundation}. Registered in England and Wales No.1161698. ## **August** NHS Blood and Transplant August saw the start of the NHS Blood and Transplant plasma donation programme in England. Eleven plasma donation centers have been designated to date. Prior to this Plasma has been sourced from other countries. ## **September** 1-2 September 2021 saw the first ever ‘virtual’ European Platelet & Leucocyte Symposium. This year the conference was hosted by Israel and had been postponed from 2020 due to the covid-19 pandemic. After cancelling all our 2020 fundraising events due to the pandemic, Saturday 4 September saw another intrepid Naitbabies team complete the annual army assault course ‘The Nuts Challenge’ held in London. Photos on this link Sept 20. M4RD - Medics4RareDiseases hosted facts about FNAIT on their #RareDiseaseMonday Instagram portal. Only 28% of medics who took part had ever heard of this disease, which was quite shocking. ## **October** FNAIT survey questionnaire near completion. ## **November** AGM – 29 November ## **December** ## Wednesday 1[st] News release from Connecticut based life science Company Rallybio - ‘’Reports Positive Data in Its Clinical Program for the Prevention of Fetal and Neonatal Alloimmune Thrombocytopenia (FNAIT).’’ htps://investors.rallybio.com/news-releases/news-release-details/rallybio-reports-positve-data-itsclinical-program-preventon/ ## **January** Friday 21. UK NSC meeting. Tuesday Jan 25. Cambridge Rare Disease Network webinar. PLRH Patient led research hub ## **February** ## **28 Rare Disease Day** Unfortunately due to the ongoing pandemic, this year we were still unable to attend any live events for Awareness week. However we had a great response online!!! 5 Charitable Incorporated Organisation (Foundation}. Registered in England and Wales No.1161698. ## **MARCH** Thursday 3rd NHSBT Stakeholder meeting. Monday 28th NHSBT New Strategy Launch meeting. March 25 – 31 Awareness Week. Huge thanks to all who took part raising awareness around the world! ## **April – Easter Break** ## **May** 11/12 May PHC – Primary Health Care event at the NEC Birmingham UK. ## **May 31 End of Year.** _**Many thanks to everyone for reading our 2022 review**_ _**and for your continued support!!!!!**_ 6 Charitable Incorporated Organisation (Foundation}. Registered in England and Wales No.1161698. Regis￿red Charily no= 1161698 Naitbabies.org Unaudited Report and Accounts 31 May 2022 Naitbabi8s.oYg Report and accounts Contènts Page General Inlomiatlon Ttvste8s' report Indepandttftt Examinerts Report Re¢eipts and payments account Stalernènl ol 8ssets and liabilities Notes to thè ae£ounls Naltbablès.org Generdl inforniallon Trusteos Y D Palm6r S Corke M Minshall A Palmer Independenl Examlngr Mi Neil Hallam FCCA Crane & Johrbslon Cliartered Certified Accountanis I l Alverton Terr8C6 Pgnzance Comwall TR18 4JH Banker8 HSBC 1 Green Markel Penzance Cornwall TR182SD Contact addr•gS 13 Rèdinnick Teira Penzance Cornwall TR184HR Webslte nailb8bies.or ¢harltable In¢grporated Organlsatlon Registration number- 1161698 Naltbablo5.org Trust8e5' Report The Truslees present thelrreport and a¢counf$ for the perlod tnded 31 May 2022. Actlvltlfr8 Nallbables.oru Is 8 n0n-pn￿I maklng oruanlgatlon that hg> beèn ¢rtsated to r41se Ihg kttoWodoe and awarenoss ol a seveie bleodlng d160rder many hav6 naver hBard of. neDnal81 aD￿mmun￿ Ihrornbocytopenl8 or NAIT. Ckn 15 May 2015 NallbablBs became a reg13tered chafity and 48 how a charttatle Incorporaied 01galllsatlon." It¥ reglslered numb¥r wllh Charlly Comml8slon18'1161698'. Ml&8loh Stat8m8nt Our m18Ston Is lo bo 4 $tfong voke ftsr parents, Chlldren and famllles who have boen 1118gnosed th. or susppd th81 thgy ml9ht hgve tho gon911c dlsoTd8r neonatal allolmmune Ihrombocytopenla. We support researc* Inlo NAITIFNAIT, Its causes, tweglment #nd pp¥ventlon. ¢ommltlèe Th¢ l¢llowing persons 89rveiJ as committeè mmb$r8 durlnu Ihè ptsrtod.. Y D Pklmgr S Cork6 Mln5h8M A Pdrnèr Charltpblè obl¢ct8 The objects of tho ¢harlty are a$ follow8.. 1. The rdlef ol sickness and the F*eseNailon and WOtec￿0￿ of good health of parents, ¢hlkdren #nd Iholrfamillgs and carers who have ar 8ff8¢1od by Ihe genellc dlwrder'Nogn8ts1 lolmmuno ThroTnlwGytopenla' (also know as NAIT or FNAIT). In parilcula¥ by the prov151on of 8UPPOrt, 8dvooacy8nd pracUe31 asslstsn¢8 as Ihe Iru818es shall Ihlnk fil-, 2. To tatry out, orto provlde fuTids to support rese•xeh Into NAITIFNAIT,116 ¢8us&s. Ir¢almenl and preventlon and publlsh the us8lul results ol such research., and 3. To advan￿ the education ol thg pyblic. Ki p8rtI￿l8r tho$è involved in th8 dl8gnosls, Iroalmenl and ¢8￿ ol Ihose sufferln9 from NAITIFNAIT. er Trustee Naltbable$.org Indepejideiit exam1￿0￿3 r81)ortlo tlie Tru$tÈÈs of mallbgb18s￿r9 I report on the Èccounts of Ihè for the y98iended 31 May 2022, whiL* are set oul on pa9e$ 4 108. R8#pO¢t1￿ rètsp¢Jn51blllè8 of truste￿ and BxamlTre Th& chariiys Iw$lè•s are res￿￿8]b￿ for the prep8rolion of Ik accoun19. The ehfjrflvs trustees consldei Ihtl an audil Is not réqulred for Ihis ya0F under section 144121 of the Charfll88 Acl 2011 Ilha 2011 Actl a￿d Ihal 8n Independent exomlnatlon Is n6ed611. 1119 my reSpon￿bIll1Y lo.. - examlne the accounts unders8¢11w 145 ofthe 2011 Acl., to follow lh& prO￿dureS 191d di)wD In Ihe General Dlrecllons glven ty lh8 Charfly Commlsslonèr undersecllon 14515llbl of the 2011 A￿.. and to slal8 whelh8r partlcular maltats h2va comè io my aiteniion. Basls of Indthpéndènt ex8iYblneV¥ report kly 8xamlngUoii was carried out In 8c¢orJan¢e ￿th Iho Geneial Dlrecilons glvcn by Ihts Ch8111y CommlÈsltsnÈr. An é%ÈmlNalion in¢ludes 8 revlew ollhe accounllng racords kepl by Ihe charlly and a OMpar￿On ol lh8 8ccounls piesented Wlh Ihos8 records. li also Indudég consideration of 811y unsval Nems or disdosuras In Ihe aecounls artd IhÈ Éeeking of éxplanabon5 fvoitt you as Iruslees concerrrfw any such mall8rs. Th8 proc8durè$ undertaken do nol provlde 811 ihe evldeDce Ihalwou be required In 2n atsdlt Ènd. tonsequoniiy no opinlon Is gwell 86 to whetkEr accounts presenl a Irutr and lair vlgw, Ihe rgpotl Is Ifniled lo ihose mallers sel out In Ihe statement below. lndap0nde￿t examln6ffs Bt8temont In coDiieclion lwlh Iny ex8mln&lEon. llo maller h8s come lo my allaniion.. vthlch 9lves ma reasonable caus8 lo bellèvè11131, In Eny malerlal respeot, the requirem8nls-. lal 10 keep aGwunling reGords In 1Gcor￿anceWi1l7 gecllon 130 of Ihe 2011 Acl,. and Ibl lo prepore accounlswhlth accord vdth the accounllng records Ènd lo ¢omply wilh ihe 8¢ryJynllng reqvlieinanls ollh8 2011 Act have not Iieen moi,. or to whlch, In my oplnlon, all&niioii should bè drewn In orderio enable a proper underslandlng of Ih tcovnis 10 bé reachBd. Néil Flallam FCCA CrÈn& & JohnEion Ch8rtered Cer￿fied AccouTrlanls 11 Afverf(bn Terr8ee P8nzanr Cornwall TR18 4JH 'Z¥-I I I IL Dated Naltbables.org Recelpts & Paymgnts Account for tho year 8ndéd 31 Play 2022 2022 2021 Recelpf8 Recelpts from charltablè 8ctivl¢le8'. Dorialions Fund Raising Inlgrest receivable 8,847 4,146 163 Total recelpts 6.652 4,317 Less.. Paymentg Costs of charltable aCtI￿tIB8. Fundraising Telephone and fax Travel 2nd subsi5ten¢e Slalionery and printing Sub8ciiplion$ Bgnk charges Insurance Sundry expenses Accountancy fees Advertising and PR 323 131 158 109 323 173 163 358 31 230 152 123 360 450 Sub lotal 1.989 1,893 AsÉet purchases Compulerequipment & other equlpm8nt Sub lotsl 1,989 1,893 Totol payments 1.893 Net rètèlpt8 for th& year 6.663 2,424 C8sh al bank and in hend brought forward 38,948 38,524 Cash at bank and In hand at 31 May 2022 45,611 38.948 Naltbqbl08.org Statement of a&8ets and Ilabllltlgs a$ at 31 May 2022 Not•8 2022 2021 MonBlary Cash at bank and In hand 45,611 38,948 Total 45,611 Unr•strl¢t8dfund 46.611 38.948 A3set8 ietalned for the Cl¢Ys own u lesllmaled wdtlen dowts value) Compulor ¥ulpmenl & other equlpMonl- unMslrl¢kd funds Compulor equlpmwt & other oqulpment pvrchased durlno the year- unrestrlcied funds 437 437 LlabllllTe8 Aecoynl&ncyf8&- unrèstrletéd l￿d 378 360 . and slgned on Ihèlr bohalf Palmer Trust¢e A R P8lrrter Th￿te9 Naitbabl&s,org Notes to the Accounts for thè y88r endèd 31 May 2022 1 Accountlng pollclès Accountlng Convenllon The accounts hav& been prepared on the ree£ipls and paym8nts basis. Th9 accounts are in accordan￿ wllh applicabl& aceouniing sta￿l2rdS and comply with the Ch&iili85 (Accoun15 and Rgports) Regulations issued under the Charilies Act 2011. Recèlpts Receipts are Ihs lo131 amounts re￿Ived by the CIO lor goods and seMc6s provK18d lo th8 p￿11 Any donations have been ineluded In the accounts when r8cetved. Payments Expendiltfie is includgd on a p&ymenls basis. inclusive olany VATwhlch Cannot b8 r8covÈred. 2 Funds 2022 At 1 June 2021 Net receipts for the peri(xl 28,948 6,663 At 31 May 2¢Y22 45.611 3 Gu8rantee$ The trustees confimi. in accordan￿ with (he Chaiilable Incorporat8d Org8ni8ations IGen8rall Regulations 2012, that al the year endw Ihg CIO did not have atiy outstgnding ouar8nleè$ to third parties nor any debts secured on assets ol the CIO. 4 TrLJ8tèes Non6 01 th8 trustéès loi any peison8 connacted wth them) received any remuner8tion during Ihe period. None ol the iruslees were relmbursed lor any expenses durlng the ￿n(￿l.