What We Do
Our Mission, Our Goals
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. We also give back to the organizations that supported our family during our journey in an effort to make a difference for those that will be following in our footsteps in the future.
Our foundation is currently involved in the following initiatives.
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.
Giving back to organizations that helped us during our journey.
- Be The Match Registry
- We fund bone marrow drives to get more people on the registry in hopes of finding a life-saving match. Our sons underwent four transplants and we are very grateful for this organization because it gave our sons a chance at life.
- We are both volunteer couriers for the Be The Match Registry and transport marrow between donors and recipients all over the United States.
- Kristin is the co-chair of the annual Be The Match 5k run/walk in St. Louis.
- American Red Cross
- We hold bi-annual blood drives in an effort to replenish the over 100 units of blood and platelets that were given to Matthew and Andrew.
- Ronald McDonald House Charities
- We support the HLH families staying at the Ronald McDonald House at Cincinnati Children's Hospital.
- Kristin volunteers at the Ronald McDonald House in St. Louis every Friday.
Finding a long term housing solution for HLH families is still a priority for our foundation. The Cincinnati Ronald McDonald house turned away over 1,200 families in 2013 because they simply didn't have room for them. We're looking at possibly renting apartment units for HLH families close to the hospital in an effort to help the situation.