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OURWEEKLYZOOM ME￿INGs ON A TUESDAY AThRACT APPROX 12 PEOPLE PER
WEEK. AND WE HAD 3 GUESTS DURING THE YEAR. THEYWERETHE PCC (PATIENT
AND CLIENTCOUNCIL) DR INGRID HOERWITZERAND PROFESSOR STONE. THESE
SESSIONSWERE AThENDED BY APPROX 30 PEOPLEWHO LISTENED TO EXCELLENT
DISCUSSIONS AND THE FEEDBACKWAS MORETHAN POSITIVE.
OUR DROP-INS CONTINUED AT LEAST 1 PER MONTH AT DIFFERENT LOCATIONS SUCH
AS BALLYMENA. BELFAST. LISBURN, MAGHERAFELT. NEwfowNARDS AND
PORTADOWN. AT LEAST 15 PEOPLE WERE IN A￿ENDANCE PER SESSION.
OUR YOUNG PEOPLES &YOUNG ADULTS ZOOM CALLS M￿ONcE A FORTNIGHT AND
ATCHRISTMAS WENT BOWLING TOG￿HER. THEf ALSO DURING THE YEARWITH
AN ARTISTWHO ALSO HAS FND AND PRODUCED A VIDEO EXPLAINING ABOUTTHEIR
CONDITION AND HOWTHEYCOPEDWITH IT.
THEYWERE ALSO PARTOFA GROUP AT STORMONTWHEN A DELEGATION OFYOUNG
PEOPLE SPOKE TO MLA'SABOUTTHEIR CONDITION AND THEIR EXPERIENCEWITH
THE HEALTH SERVICE. THEY EXPLAINEDTHAT NO PATHWAY FOR FND PATIENTSWAS
AVAILABLE AND THATTHEY HAVE BEEN TREATED POORLY BY HEALTH PROFESSIONALS
AS AWHOLE. THEY EMPHASISED THE NEED FOR BE￿ER PAEDIATRIC SERVICES FOR
YOUNG FND PATIENTS.
FEEDBACK FROM ALL THE ABOVEWAS MORETHAN POSITIVE AND WE ARE
ESPECIALLY DELIGHTED ABOUTTHE YOUNG PEOPLEASTHEY SEEM TO HAVE
BONDED OVER THEIR SHARED CONDITION. THEY HAVEALSO PROVED TO BE GREAT
FUNDRAISERS AND HAVE RAISED SEVERAL THOUSAND POUNDS FOR FND MArrERS

OUR COUNSELLING SERVICE IS GOINGWELL. THE 4 COUNSELLORS SPEAKTO
APPROX 10 CLIENTS PERWEEK. SINCE WE BEGAN OFFERING FREE COUNSELLING
FROM FNDTRAINED COUNSELLORS. TO DATE WE HAVE RECEIVED OVER 170
APPLICATIONS. SOME OFTHESE CLIENTS HAVE BEEN REFERRED TO US BY HEALTH
PROFESSIONALS BUT UNFORTUNATELYWE HAVE BEEN UNABLETO SECURE
FUNDING FROM THE DEFTOF HEALTH. FORTUNATELYWE HAVE SECURED £20,000
FROM THE NATIONAL LOThERY. ASTHEYEARLY COUNSELLING COST IS WORKING OUT
ABOUT£23.000. WE WERE INFORMED BY PROFESSOR STONETHAT FND mA￿ERs NI
ISTHEONLY FND CHARITYTO PROVIDETHISVALUABLEAND MUCH NEEDED SERVICE.
TRUSIEE.MEETING PRO.QRAMME
TWOTRUSTEES HAVE BEEN INVOLVED IN QUITE A FEW NWORK ME￿INGs AND ARE
PART OFTHE ALL PARfi GROUP ON NEUROLOGY AT STORMONT. WEWERE ABLE TO
EXPLAIN THAT NO PATHWAY ISAVAILABLE FOR FND PATIENTS AND THATTHEY FELT
THEY HAD BEEN DISMISSED BY MOST HEALTH PROFESSIONALS. THISWASTAKEN ON
BOARD BYTHE MLA'S.
WE ARE MEMBERS OF NINCA (NORTHERN IRELAND NEUROLOGICALCHARITIES
ALLIANCE)ANDAThEND mE￿INGsONcEA MONTH. MEMBERS INCLUDE MS
SOCIEtY. STROKE SOCIEfY, BRAIN INJURY AND PARKINSONS, ALONG SIDE OTHER
NEUROLOGICAL CHARITIES. THE ALLIANCE FOCUSES ON THE HEALTHCARE SYSTEM
AND HOW BROKEN IT IS.
OUR INPUT HAS BEEN VITAL WITH THE NEUROLOGY REVIEW AS ALONG WITH DR
NIGEL Ly￿LE WE HAVE BEEN INSTRUMENTAL IN PLANNING A PATHWAY FOR FND
PATIENTS. A PUBLIC CONSULTATION HAS BEEN PLANNED AND FOR THE FIRSTTIME
EVER FND HAS BEEN MENTIONED AND A PATHWAYWILL BE PUT IN PLACE WHEN
MONEY FROM THE DEPTOF HEALTH BECOMESAVAILABLE.
JEANErrE ISA MEMBER OFTHE FND SOCIETYWHICH INCLUDES PROFESSIONALS
FROM A NUMBER OF COUNTRIES IN THE WORLD. THEY HAVE REGULAR MEETINGS
AND PRESENTATIONS FROM WORLD FND SPECIALISTS.
WE ARE MEMBERS OFTHE NEUROALLIANCE CO-PRODUCTION WORKING GROUP
AND INSTRUMENTAL INTHE'BACKTHE 1 IN 6CAMPAIGN.

DISCUSSIONS HAVE BEEN TAKING PLACE BYTHETRUSTEESABOUT PLANS FOR
GOING FORWARD. WE HAVE DECIDED TO HOLD ANOTHER CONFERENCE WITH THE
EMPHASIS ON ENCOURAGING HEALTHCARE PROFESSIONALS TOAThEND. AS FND IS
0￿EN MISUNDERSTOOD. SUGGESTIONS FOR SPEAKERSWERE PUT FORWARD AND
WETENTATIVELY SUGGESTED IFWE COULD A PAEDIATRICIAN AS THE MAIN
SPEAKER AND POSSIBLYSOMEONE FROM SPEECH AND LANGUAGE AND A
PHYSIOTHERAPISTWOULD BE IDEAL.
A PROPOSAL FOR PUThING TOG￿HERA PLAN TO FORWARD TOTHE DEPTOF HEALTH
FOR FUNDING IS IN THE EARLYSTAGES. THISWOULD INVOLVEASKING FOR
PARTICIPANTS WHO HAVE AThENDED OUR COUNSELLING SERVICEAND LIVING IN
THE BELFASTTRUST AREA TO GIVE CONSENTTOACCESSTHEIR MEDICAL RECORDS
BY A HOSPITALCONSULTANT AND TO PRESENTTO THE DEPTOF HEALTH AS EVIDENCE
THAT FND MAThERS NI OFFER A SERVICETHAT MAKES A DIFFERENCETOTHE LIVES OF
THOSE LIVING WITH FND.
WE RECEIVED SEVERAL GRANTS DURING THEYEAR INCLUDING ONE FROM THE
NATIONAL LO￿ERy FOR £20,OOOTO BE USED SPECIFICALLY FOR COUNSELLING.
WE HAVE PARTNEREDWITH ENTHUSEWHICH IS A FUNDRAISING PLATFORM AND
THIS HAS CREATED SOME FUNDING AND THE NEWYEARWILLSEE USTRYING TO
OBTAIN MORE FUNDINGAND GRANTS.