## NAITBABIES ANNUAL REPORT 2021 News and events 1 June 2020 - 31 May 2021 ## **Fetal and neonatal alloimmune thrombocytopenia – FNAIT (NAIT/FMAIT)** ## **Reference and administrative details of the charity and its Trustees** Charity name: Naitbabies Other names we are known by: NAIT babies Charity 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 Company Secretary 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 **Type of governing document** : Constitution **How the charity is constituted** : Charitable Incorporated Organisation (CIO) Foundation **Date of governing document** : 15 May 2015 **Website** : www.naitbabies.org ## **Naitbabies are members of:** Genetic Alliance UK Rare Disease UK 1 Charitable Incorporated Organisation (Foundation}. Registered in England and Wales. No.1161698. ## **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 NAIT ‘neonatal alloimmune thrombocytopenia' also known as FNAIT or FMAIT. ## **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 genetic disorder neonatal alloimmune thrombocytopenia (also known as NAIT or 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 NAIT/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 are a small Charitable Incorporated Organisation run by families whose children have been affected by the severe bleeding disorder FNAIT – Fetal and neonatal alloimmune thrombocytopenia. Registered in the UK we are 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. Watch our FNAIT video _here_ 2 Charitable Incorporated Organisation (Foundation}. Registered in England and Wales. No.1161698. ## **What is FNAIT?** Fetal and neonatal alloimmune thrombocytopenia FNAIT (NAIT FMAIT) results from incompatibility between mother and baby for platelet-specific antigens that have been inherited from the father and are absent in mother. The maternal immune response may make antibodies to destroy her baby’s platelets which she sees as foreign. Platelet destruction may cause bleeding into all major organs e.g. 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. Platelets forming in bone marrow 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. Rarer diseases are also 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. ## **Our journey through the past year:** June 2020. The Covid-19 pandemic and restrictions that began in March are still in effect at the start of our fiscal year beginning 1[st] June 2020. Like many we have been getting used to working entirely from home at this time, scheduling and attending ‘virtual’ meetings and conferences. Our normal FNAIT stands/exhibitions for the year have been cancelled or postponed, as have our fundraising events. FNAIT Progress update, 1 June, by James B Bussel, MD. Pediatric Hematology & Oncology, New York, NY Read more here O8 – 10 June. We were due to exhibit at the BMFMS British Maternal and Fetal Medicine Society, the Neonatal Society and BAPM - British Association of Perinatal Medicine - Perinatal Conference being held in London, sadly this was our first conference to be postponed due to Covid-19. During June/July we embarked on some exciting new projects with FNAIT medical professionals and hope to bring more news at a later date. ## September. The European Symposium on Platelet & Granulocyte Immunobiology to have been held in Israel has been postponed until next year. August. Our online Parents Support Group membership continues to rise. We have also welcomed many new babies throughout the past year. ## September/November Rallybio are a biopharmaceutical company committed to identifying and accelerating the development of life-transforming therapies for patients with severe and rare disorders and who we have been collaborating with, released their brilliant FNAIT Animation, which can be seen on 4 Charitable Incorporated Organisation (Foundation}. Registered in England and Wales. No.1161698. ## this link - https://rallybio.com/ November 2020 Rallybio announced the following news First-in-Human Dosing in RLYB211 Phase 1/2 Study. RLYB211 is in Clinical Development for the Prevention of FNAIT. - Read more about the FNAIT programs. https://rallybio.com/pipeline/rlyb211 rlyb212/ December Meetings and Christmas! ## January/February 2021 9 February. UK NSC Stakeholders Focus Group Meeting 24 February. We connected with Monique Kinney from the US charity ‘Allo Hope Foundation, which support people with the alloimmune disease HDFN – haemolytic disease of the fetus and newborn. 28 Feb - Rare Disease Day. ## March 25 – 31 March FNAIT Awareness Week – Naitbabies 10 year anniversary. Thanks to all who told their stories and to all who generously donated! As our Board members are volunteers, all money raised goes to into our organisations work! https://www.naitbabies.org/events/ ## April On Thursday 18 April we attended the on-line Conference –‘Innovations in Fetal Therapy’, hosted by Dr D Oepkes, Leiden University Medical Center, Netherlands. May 31 End of Year. _**Many thanks to everyone for reading our 2021 review and for your continued support!!!!!**_ ## **Naitbabies.org** 5 Charitable Incorporated Organisation (Foundation}. Registered in England and Wales. No.1161698. Reglstered Charity no.. 1161698 Naitbabies.org Unaudited Report and Accounts 31 May 2021 Naltbables.ory Report and accoun Contants Pag8 General Infomwtion Trustees, report Independent Examinerfs Report Receipts and payments account statement of assets and Ilabiliti8S Notes to the a¢counts Naitbabies.org General information Trustees Y D Palmer S Corke M Minshall A Palmer Indgpendent Examlnor Mr Neil Hallam FCCA Crane & Johnston Chartered Certifiecl Accountants 11 Alverton Terrace Penzance Cornwall TR18 4JH Bankers HSBC 1 Green Market Penzance Cornwall TR18 2SD Contact address 13 RediTrnlck Terface Penzance Comwall TR184HR Webslte V￿￿.nalIbakn.e .or Charitablg Incorporated Organlsatlon Registration number- 1161698 Naitbabies.org Trustses. Report The Trustees present their report and accounts for the period 8fKled 31 May 2021. ACt￿lt￿8 Nailbabies.org is a non-profit making organisalion that has been created lo raise the knowledge and awareness of a Seve￿ bleeding disorder many have never heard of, neonatal alloimmune thromboGylopenia or NAIT. On 15 May 2015 Nailbabies became a registered charity and is now a GhaFltable incorporated organisalion. Its registered number with Charity Commission is '1161698'. Mlsslon Statement Our mission is lo be a strong volce for parents, children and families who have been diagnosed with, or suspect that they might have the genetic disorder neonatal alioimmune thrombocytopenia. We support research into NAITIFNAIT, ils causes. treatment and prevention. Commltteo The following persons served as committee members during the period.. Y D Palmer S Corke M Minshall A Palmer Charitablo objects The objects of the charity are as follows.. 1. The r8li8f of sickness and the preservation and prote￿On of good h6alth of parents, children and their familles and carers who have or are affected by the genetic disorder'Neonatal Alloimmune Thrombocytoponia, (also know as NAIT or FNAIT}- In particular by the provision of support, advocacy and pr8cltcal asststance as the trustees shall think fit.. 2. To cary out , or to provide funds to support research into NAITIFNAIT, Its causes. treatment and PTevenlion and publish the useful results of such research,. and 3. To advance the education of the public, in particular those involved in th& diagnosis, treatment and care of those suffering from NAITIFNAIT. This report was approved by the board on d signed on its behalf. DPa Truste& Naltbabies.org Independent examlnerfs report to tho frusts8s of NaltbabEe¥.org l Tgport on Ihe accounts of th8 ¢h•rity for tho year ended 31 May 2021, whlch ara 8et out on pag¥$ 4 Respectlve re8pon8ib511es of tru8tees and examlner The charfVs tmstaès #rè r•8pon$iNe fttr thè preparallgn of the accovnls. The charltys trustees conslder that an audit L8 not required for Ihls year under SeC￿n 14412) of the Charitles Act 2071 (the 2011 Act} and that an Independent examlnatlon Is needed. 11 is my responsSblllty to.. - examln& thè a¢￿Unts under sedion 145 oflhe 2011 Act. to follow the procedures lard down In the General Dlrectlons glven by the Charfty Comrnissloner nder secllon 14515llbl of the 2011 Act., and - to s*Ble whether partkular matter8 have come lo my att8nlltsn. Bas1$ of Independent èxamlnvT8 report My exawnlnation was carcled out In &ccordance with the General Directh)ns g5ven by the Char Commi8SToner. An ￿mInatIOn Includ￿ a revltrw of the accountlng rècords kept by the charity and a cornparlson of Ihtr arwunts presented with Iho8e records. It also Includes conslderatlon of any unsual items or dlsdosures In the accounts and Ihe seektng of ¥XFlanations from you as Iwustees £onceTnlng any such mattels. Th& proceduies undertaken do not provide all the &vld¢nro that would be ￿qUIred In an audtt and, consequently no oplnlon Is glven as lo whether the accounts present a 'lrue gnd f¥lr and the report is limlled lo thos6 m8iters set out In the statement bejow. Independènt •xamlngrfs statement In connection with my examlnatlon, nts mattèr ha$ come lo my attenlfon: - whlch 9Sve$ me reasonable cause lo bellevo that, In any mal¢rlal resped. th8 r&qvlrements- {0) to kogp a￿0￿￿tIng records In accordance wlth sectlon 130 of Ihe 2011 ACL. and (b) lo prepare accounts whlch 8ceord wrfh th• aeA)untkng records and to compty wlth tha acc(￿nting requlremenls oftha 2011 Act hav¢ not been mpl,. OT lo whl¢h, In my oplnlon, attenllon should be drawn th older lo enable a proper understanding of fha accounts lo b? reached. Nell Hallam FCCA Crane & Johnston Chartered Certffied Accountants f1 ￿vertOn Terrac8 Penzan¢e Comwa TR18 4JH 23rd Novemt*r 2021 Dalad Naitbabies.org Receipts & Payments Account for the year ended 31 May 2021 2021 2020 Recelpts Recolpts from charltable a¢tlvltlos: Donatpons Fund Raising Interest receivabl8 4,146 163 11,994 386 64 Totsl rocelpts 12.444 Less: Paymènts Costs of chaTllable activittes: Fundraising Telephone and fax Travel and subsistence stationery and printing Subscriptions Bank charges Insuranc8 Support Sundry expenses Accountancy fees AdvertSslng and PR 323 131 158 109 323 173 1,679 178 2,742 1.181 328 35 500 360 450 360 7,846 Sub totsl 1,893 15,056 Asset purchases Computer equipment & other equlpment 1,310 Sub total 1,893 16,386 Totsl payments 16,366 Net recelpts for the year 2,424 (3.922} Cash at bank and in hand brought forward 36,524 40,446 Cash at bank and In hand at 31 May 2021 36,524 Draft Naltbables.org statem¢nt of ass¢ts and Ilabllltles as at 31 May 2021 Notes 2021 2020 Monetary assets C8sh at b8nk and in hand 38,948 36,524 Total 38,948 36,524 Unrostrlcted funds 38,948 36.524 Assets retalned for the CIO'S own uso {estSmated wrftten down value) Computer equlpment & other 8quipment- unrestricted fund8 Computer equlpmenl & other equipment purchased durlng the year- unrestricted fund8 437 649 873 437 1,522 Llabllltl•s AccountanGyfee- unrestricted fund 360 360 The accounts were approved by the TNstees on ........... .lo.¥lnd Slgned on thelr beh8Ef Palm Trustee A R Palmer Trustee Naitbabies.org Notes to the Accounts for the yoar ended 31 May 2021 1 Accounllng pollcle$ Accountlng Convantlon The 8ccounts have been prepared on the receipts and payments basis. The accounts are In accordanoe wth appI￿able accounting standards and comply with the Charities (Aceounts and Reports) Regul8llDns issued under the Charities Act 2011. Recelpts Receipts are the total 8mounts received by the CIO for goods and servke5 provided to the PLfblk. Any donalltsns hav8 be8n included in the aocounts when re￿ived. Payments Expenditure 1$ Included on a payments basis, Inclusive of any VAT which cannot be recovered. 2 Funds 2021 At 1 June 2020 Net receipts for the period 36,524 2,424 At31 M8y2021 38,948 3 Guarantees The trustees confirm, in accordance with the Charllable Incorpor81ed Organisations (Ggneral) Regulallons 2012, that at the year endlng the CIO did rÈot have any outstanding guarantees to Ihlrd parties nor any debts secured on assets of the CIO. 4 Trustees None of the trustses (or any persons connected with them) recelved any remuneration during the period. One of the trustees was relmbursed expenses of £5 during the period.