The mission of the Matthew and Andrew Akin Foundation is to support the world-renowned experts at the HLH Center of Excellence at Cincinnati Children's Hospital and their core priorities of research, education and family support.
HLH Center of Excellence at Cincinnati Children's Hospital
- We are currently funding Dr. Rebecca Marsh's study on XLP and the XIAP deficiency. The goal is to understand why XIAP deficient patients develop HLH/fevers/inflammation and finding better treatment options for them. Research projects like this one will one day lead to the cure for for XLP and HLH.
- Education and Awareness
- We support the HLH Center of Excellence in strategies to increase awareness of HLH and the treatment options available at Cincinnati Children's to newly diagnosed families. We've given guest lectures at several pediatric medical centers and work closely with Cincinnati Children's to help families seeking information online connect with the experts there.
- Family Support
- We currently provide Toys R Us gift cards to every newly diagnosed child with HLH at Cincinnati Children's Hospital. These children will be stuck in their rooms for weeks or possibly months on end during the bone marrow transplant process.
- We provide Target gift cards to all the in-patient families battling HLH during the holidays.
- We continually reach out to the Physical, Occupational, Speech, Music Therapy and Child Life departments to help fulfill their needs.