THE SPINAL CEREBROSPINAL FLUID (CSF)LEAK OF CANADA

FUNDED A $3 000.00 GRANT TO DR. FARNAZ AMOOZEGAR FOR INCEPTION OF CANADIAN SIH DATABASE REGISTRY-MARCH 27 2023 PARTICIPATED IN SPINAL CSF LEAK WEEK CAMPAIGN DURING WEEK OF JUNE 4-10 2023. THE FOLLOWING WAS ACCOMPLISHED THROUGH CAMPAIGN: SECURED PROCLAMATION FORM CITY OF TORONTO RECOGNIZING JUNE 4-10 AS SPINAL CSF LEAK AWARENESS WEEK WITH HELP FROM VOLUNTEERS WE WERE INVOLVED ILLUMINATING NUMEROUS LANDMARKS NATIONWIDE IN PURPLE THE COLOUR ASSOCIATED WITHT SIH AND IH. ILLUMINATED LANDMARKS INCLUDED THE FALLS IN NIAGARA THE CN TOWER AND GOVERNMENT HOUSE IN ST. JOHN’S. THESE LANDMARKS WERE ILLUMINATED IN PURPLE IN RECOGNITION OF SPINAL CSF LEAK AWARENESS WEEK EXHIBITED IN PERSON AND VIRTUALLY AT THE CANADIAN WOMEN IN MEDICINE (CWIM) CONFERENCE – IN MONTREAL – MAY 20-21 2023. CURRENTLY WORKING ON ORGANIZING THE FIRST NATIONAL IN-PERSON + VIRTUAL SIH CONFERENCE. CURRENTLY WORKING ON ORGANIZING THE NEXT SIH CASE ROUNDS FOR PHYSICIANS. PUBLISHING THE RESULT OF CROSS-SECTIONAL ANONYMOUS ONLINE SURVEY ON PATIENT EXPERIENCE OF DIAGNOSIS AND TREATMENT OF SPONTANEOUS INTRACRANIAL HYPOTENSION IN CANADA. THE DATA FROM THE SURVEY WILL BE USED TO EXPLORE THE NEED FOR SPECIALIZED MULTIDISCIPLINARY CENTERS AND PROGRAMS WITHIN HOSPITALS IN CANADA TO TREAT PATIENTS AFFECTED BY THIS CONDITION. THIS SURVEY WILL BE HELPFUL IN ASSESSING THE QUALITY-OF-LIFE MEASURES AND WILL ASSESS HOW MANY PATIENTS NEED TO TRAVEL ABROAD TO OBTAIN PROPER TREATMENT.

HOSTED THE FIRST CANADIAN SIH CONFERENCE FOR PHYSICIANS PATIENTS AND CAREGIVERS HELD INN TORONTO (IN-PERSON + VIRTUAL FORMAT) – MAY 4 2024. ALSO ORGANIZED A FREE WEBINAR FOR PHYSICIANS AND PATIENTS ON 'DIAGNOSIS AND TREATMENT OF SPINAL CSF LEAK AND CSF VENOUS FISTUAL 'ALGORITHMIC MULTIMODALITY APPROACH' – NOVEMBER 14 2023 : WE CREATED THE FIRST ISSUE OF OUR NEWSLETTER; 'THE CSF LEAK TIMES.' THIS NEWSLETTER IS AN EXTENSION OF OUR MISSION TO PROVIDE EDUCATION CREATE A STRONG COMMUNITY AND DRIVE POSITIVE CHANGE. IN EACH ISSUE WE WILL SHARE RECENT KEY PUBLICATIONS UPDATES ON CANADIAN RESEARCH AND ACTIVE PROJECTS OUR UPCOMING EDUCATIONAL EVENTS EDUCATIONAL OPPORTUNITIES ADVOCACY INITIATIVE AND FUNDRAISING EFFORTS. PROVIDE FUNDING TO THE UNIVERSITY OF CALGARY ('THE GOVERNORS OF THE UNIVERSITY OF CALGARY') FOR THE SIH OUTCOMES STUDY: 'PROSPECTIVE OBSERVATIONAL STUDY': THE ISH OUTCOMES STUDY IS A PROSPECTIVE LONGITUDINAL OBSERVATIONAL STUDY THAT AIMS TO ASSESS OUTCOMES FOR SIH PATIENTS TREATED BY VARIOUS INTERVENTIONS. THIS STUDY WILL ALSO ASSESS A NUMBER OF FACTORS INCLUDING DISABILITY QUALITY OF LIFE MENTAL HEALTH AND A GLOBAL ASSESSMENT OF CHANGE ALL COLLECTED PROSPECTIVELY AT MULTIPLE TIME INTERVALS FROM PRIOR TO TREATMENT TO FIVE YEARS FOLLOWING TREATMENT. IN ORDER TO ASSESS DISABILITY A SPECIFIC SPINAL CSF LEAK DISABILITY SCALE HAS BEEN CREATED WITH THE HOPE OF BECOMING A VALIDATED SCALE IN TIME FOR THIS CONDITION.