A Vital Perspective: Vito Grasso, Consumer Reviewer for NF Research

Author: Vito Grasso, published by CDMRP-NFRP

Published On: 09/08/2020

Neurofibromatosis (NF) is a unique and challenging disease. Most people are unaffected by it and, therefore, are unaware of how it impacts patients and their families. This disease has had a dramatic life-changing impact on our family. It is extremely difficult to witness our daughter Rebecca's struggle with NF; the endless medical appointments, surgeries, recovery, scans, and tests are a constant reminder of the disease and its serious consequences. We are continually looking for clinicians with NF knowledge and experience. We live in a suburb of Albany, NY, and although we have several reputable medical centers in the area, there are no clinicians with significant experience with NF nearby. For example, my daughter has had multiple surgeries to remove brain tumors; as a result of these surgeries, she has lost her hearing and has an auditory brainstem implant (ABI) to allow her to "hear" sound. We have not been able to find an audiologist or other hearing specialist in our area to provide the ongoing training and adjustments necessary to maximize the benefit of having an ABI. So we travel over 3 hours to Boston for our daughter's medical appointments and care at Massachusetts General Hospital and Massachusetts Eye and Ear Institute. The great distance makes it difficult for Rebecca to maintain her work schedule and has severely limited her ability to get the training and support she needs to enhance the value of her ABI. The emotional impact has been severe, and I cannot imagine how threatened she feels by the disease. I strongly recommend that people with NF or with a loved one who has NF become active in an NF advocacy organization to benefit from association with others who are dealing with this disease and its life-changing impact.

Read more about Vito's advocacy work and his involvement in the NF research review process here.