There are those situations in life where you are destined to meet and for me, meeting Dr. Jahannaz Dastgir — “Naz for short” — was one of them. She is Director of the Pediatric Neuromuscular Medicine program at Goryeb Children’s Hospital in Morristown, NJ and an incredible physician dedicated to helping our CMT pediatric patient community. Her primary passion in life is the care of children with childhood onset neuromuscular disorders. It has been very clear to her in clinical practice that though there has been great emphasis on research and treatment of muscular dystrophies, myopathies and motor neuron disorders, inherited neuropathies have been somewhat overlooked and require more attention.
Over the past 7 years, she has worked on a number of clinical trials including the Ionis trials for spinal muscular atrophy (which led to the development of the now FDA approved Nusineren), Sarepta trials for the now FDA approved Exondys51, and many others. While a clinical research fellow, she was also involved with the development of a clinical protocol for the Giant Axonal Neuropathy trial – the first intrathecal vector mediated gene therapy currently underway at the National Institutes of Health.
Tell us about yourself?
A good friend of mine passed away from a brain tumor when I was in 2nd grade, and I was angry about her being taken away from me. It was truly from that point on that I became obsessed with the brain and neurology. In college, I majored in both neuroscience and philosophy in order to study how the nervous system works and how it thinks. I also had the opportunity to be a work-study student in Dr. Kurt Fishcbeck’s neurogenetics lab at NIH, just around the exciting time that he discovered the mutation in the androgen receptor gene which causes spinal and bulbar muscular atrophy.
In medical school rotations, I realized the joy and passion I had for the care of children because I spent a lot of time smiling in pediatric clinic. In pediatrics residency, I had the great fortune of treating children with CMT, SMA and muscular dystrophy. I also had nights on call with parents telling me about the frustrations of not having therapeutics in the neuromuscular field, which at that time was primarily palliative. I carried their concerns and grief with me as I slowly started to realize that I wanted to spend the rest of my life with and dedicated to these amazing individuals. I was inspired and given a reason to be who I am today.
Why is CMT your passion?
CMT and all hereditary neuropathies are of great importance to me. I still have many cases that are undiagnosed, and many patients who have a diagnosis, but I have nothing to offer them as treatment. This is an area in major need of attention, and I find it imperative to work toward the goal of therapeutics. If SMA and duchenne can do it, why not CMT?
Tell us what patients will experience when they come to pediatric neuromuscular program at Goryeb Children’s Hospital.
Firstly, you will be established under my care, which guarantees exposure to some probably bad jokes in an effort to make you smile…prepare yourselves! Then, in all seriousness, I’ll get cracking on the case. I will listen to your story and work to ensure that you have a genetic (or acquired) diagnosis. I will also make sure that you are plugged into the the multidisciplinary team that is necessary for your condition.
In cases of CMT, the team is primarily myself, a physiatrist, orthopedic surgeon, physical and occupational therapists and an orthotist. All of our specialists are located in an easily accessible building. I will make sure that you are registered with your appropriate registries, such as the one offered by the Hereditary Neuropathy Foundation. And, if there are any clinical research trials available for your diagnosis, you will know about it. At the end of the visit, I will make sure that our team’s plan is clearly explained to you as a family and to your pediatrician.
How can patients make an appointment at the Atlantic Health System?
Please call 973-971-5700 to set up an appointment with me first. You can also feel free to reach out to me over email: [email protected] Our office location is: 55 Madison Ave. Morristown, NJ 07960