Interim Report January-June 2020
NeuroVive will participate at the Champ Foundation's Virtual Pearson Syndrome Conference, on 29 May 2020.
"Pearson Syndrome (PS) is a multi-system disease caused by a deletion in mitochondrial DNA. The hallmark features are sideroblastic anemia and pancreatic insufficiency. PS is often fatal in infancy. In addition to the hematological and pancreatic symptoms, PS can impair the heart, kidneys, eyes, ears and brain. Survivors develop Kearns-Sayre Syndrome."
"The Champ Foundation was founded in 2015 in honor of William Reynolds, who was diagnosed with Pearson Syndrome when he was two months old. William was severely anemic and neutropenic for his first year, requiring many red blood transfusions. After a period of relatively stable health, William developed myelodysplastic syndrome (MDS) and required a bone marrow transplant when he was four. William was not the first child with Pearson Syndrome to receive a secondary diagnosis of MDS. More research and a better understanding of this disease is still needed. The Champ Foundation is committed to supporting this research."