Akari Foundation

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 2024 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 2024 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.

Events & Awareness Program - The Akari grassroots outreach and awareness program aims to conduct awareness marketing campaigns targeting authorities health professionals and the general population. Increasing public awareness is crucial due to the lack of recognition of rare diseases aiming to promote appropriate public policies professional medical care and healthcare systems. This comprehensive program integrates all our other initiatives to maximize awareness efforts across various platforms. To broaden our outreach our team participated in community exhibitions industry conferences and advocacy events including over 50 in the US 2 in Europe and 5 in Mexico.