Akari Foundation

TO EDUCATE EMPOWER AND ADVOCATE TO THE HISPANIC IMMIGRANT COMMUNITY HELP WITH RESOURCES ADVOCACY AND EDUCATION IN THE RARE DISEASES SPECIALIZING IN DUCHENNE MUSCULAR DYSTROPHY

HISPANIC COMMUNITY EDUCATION - AT AKARI WE RECOGNIZE THE IMPORTANCE OF PROVIDING THE HISPANIC COMMUNITY WITH A RELIABLE RESOURCE FOR ACCURATE MEDICAL ADVICE AND THE LATEST RESEARCH UPDATES ESPECIALLY WHEN DEALING WITH RARE DISEASES. OUR VIRTUAL EDUCATIONAL WEBINARS ARE DESIGNED TO ADDRESS THE UNMET NEEDS OF OUR COMMUNITY ENHANCING EDUCATION THAT IS OFTEN INACCESSIBLE TO THIS UNDERSERVED POPULATION. WE AIM TO BRIDGE HEALTHCARE LITERACY GAPS CAUSED BY INEQUALITY SYSTEMIC RACISM AND LANGUAGE BARRIERS WITHIN THE HEALTHCARE SYSTEM AND SOCIETY. THESE WEBINARS ARE CURATED TO BE CULTURALLY COMPETENT AND PATIENT-FOCUSED CATERING TO THE NEEDS OF FAMILIES. THEY ARE HOSTED ON ZOOM AND STREAMED LIVE ON FACEBOOK ALLOWING FAMILIES TO ASK QUESTIONS AND ENGAGE IN REAL-TIME DISCUSSIONS. EACH WEBINAR COVERS VARIOUS TOPICS INCLUDING MEDICAL ADVANCES CLINICAL TRIALS PSYCHOLOGY MENTAL HEALTH SUPPORT NUTRITION AND MORE. IN 2023 WE HOSTED 24 SPANISH-LANGUAGE WEBINARS AND A PRESENTATION BY A PHARMACEUTICAL PARTNER. OVER 1,100 INDIVIDUALS FROM THE HISPANIC COMMUNITY ACROSS 26 COUNTRIES REGISTERED TO PARTICIPATE. ATTENDEES JOINED FROM THE UNITED STATES MEXICO NEARLY EVERY COUNTRY IN LATIN AMERICA AND AS FAR AWAY AS SPAIN TURKEY AND ROMANIA. THE EDUCATIONAL VIDEOS AVAILABLE ONLINE AFTER THE LIVE EVENTS HAVE GARNERED OVER 850 ADDITIONAL VIEWS FROM 36 COUNTRIES.

FAMILY SUPPORT RESOURCES - FAMILIES NAVIGATING THE COMPLEXITIES OF CARING FOR THEIR CHILDREN OFTEN TURN TO THEIR COMMUNITY FOR SUPPORT. OUR RESOURCES PROGRAM OFFERS ASSISTANCE THROUGH PHONE CALLS TEXTS IN-PERSON MEETINGS AND OTHER NECESSARY MEANS TO HELP THOSE IN NEED. IN 2023 OUR RESOURCE PROGRAM ACCOMPLISHED THE FOLLOWING: - PROVIDED OVER 100 BACKPACKS TO NEWLY DIAGNOSED FAMILIES - OFFERED AROUND-THE-CLOCK ASSISTANCE TO 102 FAMILIES ACROSS 8 COUNTRIES - SUCCESSFULLY REFERRED 5 FAMILIES IN 33 COUNTRIES TO CLINICAL TRIALS - PROVIDED PSYCHOLOGICAL SUPPORT FREE SESSIONS WITH LICENSED PSYCHOLOGISTS TO OVER 25 FAMILIES IN 8 COUNTRIES REGARDLESS OF THE NEUROLOGICAL DISEASE. - OFFERED COMMUNITY SUPPORT AND NETWORKING FOR NEARLY 4,400 UNIQUE INDIVIDUALS WE PROVIDE FAMILIES WITH INVALUABLE GUIDANCE AND SUPPORT FROM OTHERS WHO HAVE ENCOUNTERED SIMILAR CHALLENGES. OUR PROGRAM OFFERS INFORMATION COPING STRATEGIES AND CONNECTIONS TO LEADING PHYSICIANS AND RESOURCES PROVIDED BY OUR PARTNERS. OPERATING AROUND THE CLOCK THE FAMILY RESOURCE PROGRAM ASSISTS INDIVIDUALS AND FAMILIES NAVIGATING THEIR JOURNEY WITH RARE DISEASES. WE FOCUS ENTIRELY ON SERVING OUR COMMUNITY IN SPANISH ADDRESSING TOPICS SUCH AS CARE COPING STRATEGIES CLINICAL TRIALS AND RESOURCES FROM VARIOUS ORGANIZATIONS. FAMILIES ARE PAIRED WITH COMPANIONS WHO OFFER ESSENTIAL SUPPORT BASED ON THEIR OWN EXPERIENCES.

WORKSHOPS - IN 2023 THE AKARI FOUNDATION SUPPORTED HUNDREDS OF HISPANIC FAMILIES AFFECTED BY DUCHENNE AND OTHER RARE CONDITIONS THROUGH FIVE SPANISH-LED IN-PERSON WORKSHOPS. EACH WORKSHOP WAS FREE WITH MEALS AND CHILDCARE PROVIDED ALLOWING PARENTS AND CAREGIVERS TO FULLY ENGAGE IN INVALUABLE EDUCATION NETWORKING AND ADVOCACY OPPORTUNITIES. THE AKARI IN-PERSON WORKSHOPS A UNIQUE INITIATIVE BROKE DOWN FINANCIAL LANGUAGE AND GEOGRAPHICAL BARRIERS. THIS ALLOWED FAMILIES TO MEET EXPERT PHYSICIANS SEEK MEDICAL ADVICE LEARN ABOUT CURRENT RESEARCH AND APPROVED THERAPIES AND CONNECT WITH A SUPPORTIVE COMMUNITY FOR THE FIRST TIME.