What began as a scientific interest for D. Wade Clapp, MD, chair of the Department of Pediatrics at the Indiana University (IU) School of Medicine, has grown into a life-altering passion.
Dr. Clapp is a neonatologist who started in hematology, so pediatric sarcomas and genetic cancers are not his natural area of acumen. Yet, as he continued his research and began meeting patients and their families, the physician in him took over.
Dr. Clapp, who is focused on two rare genetic disorders called Neurofibromatosis type 1 (NF1) and Neurofibromatosis 2 (NF2), noted that almost a quarter million people ages 18 to 24 years old live with NF1 and 25,000 more individuals have NF2. However, NF2-linked tumors account for approximately 3 percent of all nervous system related tumors. Dr. Clapp and his colleagues have worked on NF1 for nearly 20 years and now have three drugs in clinical trials and one that is FDA approved. Their work in NF2 has begun much more recently.
NF2 is characterized by benign tumors of the nerves that transmit balance and sound impulses from the inner ears to the brain, leading to deafness, vertigo, facial muscle weakness and chronic neuropathic pain.
“The primary way to treat NF2,” Dr. Clapp said recently, “hasn’t changed since I was in medical school. These kids, who live in our community, deserve more.” He went on to say, “Surgery carries significant risks, yet no long-term effective therapies exist for these highly debilitating tumors. This is why it’s so important to me to work to develop pharmaceutical approaches to halt or reverse the progression of tumor growth in patients.”