The mission of the Matthew and Andrew Akin Foundation is threefold:
1. To provide resources for children with HLH and their families going through the bone marrow transplant process.
In our opinion, the best resource for children diagnosed with HLH is Cincinnati Children's Hospital. They see more cases of HLH every year than any other hospital in the world. With that, comes knowledge and the ability to use what they learned yesterday, today. Cincinnati Children's has a dedicated team of doctors that are dedicated to Histiocytic disorders. Therefore, we want to direct as many families to Cincinnati Children's Hospital as possible. We purchase the keywords "Hemophagocytic Lymphohistiocytosis" and "HLH" on Google so that newly diagnosed families can find our website and start their journey where the experts are located.
Our big goal is to help build a new 55 room Ronald McDonald House apartment complex at Cincinnati Children’s Hospital so these families so can live in a “clean” environment outside the hospital pre- and post-transplant. The plans have already been drawn and now it is time to fundraise. Each one and two bedroom apartment will be completely self sufficient with its own dishwasher, washer and dryer, etc... Post transplant, the children don’t have functioning immune systems for many months, so it is imperative that they are protected from life-threatening infections. Plus, after their initial discharge they will be coming back to the hospital two to four times a week to be checked by the Doctors and for blood and platelet transfusions. So being able to stay across the street from the hospital is the ideal situation. Families come from all over to Cincinnati Children’s Hospital because they perform more pediatric bone marrow transplants yearly than any other hospital in the United States. The average stay in Cincinnati for a family going through the transplant process is 8 months. We lived in Cincinnati for seventeen months and would have gladly welcomed a structure like this to call home.
We currently provide a Toys R Us gift card to every newly diagnosed child with HLH at Cincinnati Children's Hospital. These children will be stuck in their rooms for weeks on end during the bone marrow transplant process and we want them to have some new toys to help pass the time. Each year, we also provide a scholarship to a Histio survivor who is graduating High School and starting a four year college.
2. To fund HLH research through the Histocytosis Association of America. This organization is leading the way in funding worthy scientific research projects in hopes of finding a cure for Hemophagocytic Lymphohistiocytosis.
3. To educate the public on the importance of joining the National Marrow Donor Program. This is the leading organization in the field of marrow and cord blood transplantation, working every day to connect patients, doctors, donors and researchers to the resources they need. We will 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.