BRAIN RECOVERY PROJECT

INFORMATION AND RESOURCES: IN 2025, THE ALLIANCE TRANSITIONED FROM PROVIDING GENERAL INFORMATION TO DELIVERING HIGH-STAKES SUPPORT AND EDUCATION FOR THE EPILEPSY COMMUNITY. OUR "EPILEPSY SURGERY SAVES LIVES" CAMPAIGN REACHED OVER 70,000 UNIQUE INDIVIDUALS, PROVIDING FAMILIES WITH THE CLINICAL CONTEXT NEEDED TO PURSUE SURGICAL TREATMENT OPTIONS THAT ARE KNOWN TO IMPROVE THE TEN-YEAR LIFE EXPECTANCY OF CHILDREN WITH DRUG-RESISTANT SEIZURES. THIS DIGITAL OUTREACH WAS SUPPORTED BY A ROBUST ONLINE RESOURCE HUB THAT SAW 80,000 PAGE VIEWS, ALONGSIDE NINE EXPERT-LED WEBINARS AND TEN TECHNICAL BLOG POSTS THAT TRANSLATED COMPLEX SEIZURE MANAGEMENT INTO ACTIONABLE GUIDANCE FOR CAREGIVERS. TO IMPROVE THE DAILY LIVES OF STUDENTS, WE TRAINED 140 SCHOOL STAFF MEMBERS ACROSS 16 STATES, MOVING BEYOND BASIC SAFETY TO ADDRESS THE SPECIFIC COGNITIVE AND EDUCATIONAL HURDLES CHILDREN WHO HAVE HAD EPILEPSY SURGERY FACE IN THE CLASSROOM. ON A DIRECT-SERVICE LEVEL, OUR PARENT SUPPORT NAVIGATOR PROGRAM MANAGED MORE THAN 150 REQUESTS FOR ASSISTANCE, PROVIDING A CLEAR ROADMAP FOR FAMILIES OVERWHELMED BY A NEW DIAGNOSIS OR A CHANGE IN CARE. BY FACILITATING ONE-ON-ONE PEER MENTORSHIP FOR 90+ PARENTS, WE ENSURED THAT CAREGIVERS HAD THE EMOTIONAL AND PRACTICAL FORTITUDE TO ADVOCATE FOR THEIR CHILDREN WITHIN BOTH THE MEDICAL AND SCHOOL SYSTEMS.

ADVOCACY AND COLLABORATION: THROUGH ACTIVE PARTICIPATION IN LEADING NATIONAL AND INTERNATIONAL NETWORKS, THE ALLIANCE ENSURES THE NEEDS OF FAMILIES NAVIGATING COMPLEX EPILEPSY ARE REPRESENTED WITHIN THE BROADER MEDICAL AND EDUCATIONAL SECTORS. IN 2025, WE CONTRIBUTED OUR EXPERTISE TO SEVERAL HIGH-IMPACT GROUPS, INCLUDING THE RARE EPILEPSIES NETWORK, THE INFANTILE SPASMS ACTION NETWORK, THE EPILEPSY LEADERSHIP COUNCIL OF THE AMERICAN EPILEPSY SOCIETY, AND PERKINS SCHOOL FOR THE BLIND. OUR STAFF PROVIDED TECHNICAL PRESENTATIONS AND ADVOCACY-FOCUSED SESSIONS AT MAJOR PROFESSIONAL MEETINGS, SUCH AS THE NATIONAL ASSOCIATION OF SCHOOL NURSES, THE COUNCIL OF PARENT ATTORNEYS AND ADVOCATES, THE AMERICAN EPILEPSY SOCIETY, AND THE AMERICAN ACADEMY OF AUDIOLOGY, DIRECTLY INFORMING THE CLINICIANS AND SCHOOL-BASED PROFESSIONALS WHO MANAGE PATIENT CARE AND SCHOLASTIC EDUCATION. FURTHERMORE, WE FACILITATED TWO IN-PERSON TRANSITION OF CARE MEETINGS, BRINGING TOGETHER CLINICIANS AND INDUSTRY STAKEHOLDERS TO ADDRESS THE SPECIFIC CHALLENGES YOUNG ADULTS WHO HAD EPILEPSY SURGERY FACE WHEN MOVING INTO ADULT HEALTHCARE SYSTEMS.