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ResearchResearch News |
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From the Heart of NP-C Researchers For the many researchers who have dedicated their lives to solving the mystery of Niemann-Pick Type C disease and to finding a treatment and cure, NP-C is not simply an interesting scientific problem. These caring and brilliant scientists, many of whom are parents themselves, feel a deep pain and sorrow each time they receive news that another young person afflicted with NP-C has passed away. Each has a dream to find the answer to NP-C which will lead to a treatment as quickly as possible. The following are excerpts from a few of our researchers who have expressed their feelings in this regard: Steven Walkley, DVM, Ph.D., Albert Einstein College of Medicine, NY-"I have been involved in the study of storage diseases, including NP-C, for many years and have had the privilege of getting to know a number of families with an affected child, in some cases more than one. As the father of two young children, I readily identify with these parents. Time and time again, the greatest impact for me has been to get to know the mothers of affected kids. What I have come to believe is that there is nothing in this world more powerful, or more courageous, or more enduring, than a mother's love." David Marks, Ph.D., Mayo Clinic, MN-"As a parent, the connection I feel with the Parseghians and other affected NP-C families has touched me and brought me to tears many times. Receiving funds to work on NP-C, I bring back to the lab a commitment that our job is not just to study an interesting disease, but to make progress in a race against time with the goal of hopefully contributing to saving lives." Robert Erickson, M.D., University of Arizona, AZ-"I have been a medical researcher for 44 years. Seven years ago when I met Cindy and Mike Parseghian and their children, I became emotionally involved with my research in a new way." Steve Sturley, Ph.D., Columbia University, NY-"A day doesn't go by when I don't ask myself what more can be done to understand and cure this genetic disorder. When I look at what the Parseghians and the other affected families do each day, and as my own family builds, I just hope I would have the same courage and determination in the same situation." Elina Ikonen, M.D., Ph.D., National Public Health Institute, Finland-"When I have taken the trip to Tucson to the APMRF annual NP-C Scientific Meeting, I have told my daughters, 'There are two little girls in Arizona that need my help." When Christa passed away, I told Satu and Sonja about that and they asked, 'Mom. Why didn't you help her after all?' I replied, 'I did my best but sometimes that is not enough. But that does not mean we should give up. We will just have to keep working and one day we will succeed.'" Peter Pentchev, Ph.D., Retired, National Institutes of Health-"The parents of NP-C children take the lead in setting the example of how the scientific community should act. Their love, courage and devotion have certainly inspired many scientists to move beyond the arena of competitive research to establish a common meeting ground where the heart as well as the mind dictate their action." |
