Dr. Peter G. Pentchev - "Our Light in the Darkness"

Peter G. Pentchev, Ph.D.

30-Year Career as Senior Research Scientist
at NINDS
(National Institute of Neurological
Disorders and Stroke)
at the National Institutes of Health
1970-2000

Presentation at the 2009 NNPDF Family Support and Medical Conference in Seattle, Washington

July 30, 2009

Barb Vorpahl, Board Chair of the National Niemann-Pick Disease Foundation: 

“Tonight we have a special presentation - to the man fondly known to many as “Uncle Peter” -- Peter Pentchev.

My first contact with Peter goes back 20 years. Our daughter, Stacey, had just been diagnosed with NPD type C at age 2. 

There was very little information anywhere.  In a desperate call to find anyone who had even heard of the disease I was put in touch with NIH.  Peter took my call.  I will never forget that contact.  Peter was that spark of hope -- a little light in our dark tunnel.

At that time, Peter was Senior Research Scientist at the National Institute of Neurological Disorders at NIH, one of the few labs in the country working on NPC.   We got to know Peter very well as Stacey went through the clinical trial on cholesterol-lowering medications and diet… the first clinical trial for this disease.

When the trial wasn’t as successful as we had hoped, Peter encouraged the families taking part to take an active stance against this disease -- to become organized and start a foundation. So you might say he is the father of the NNPDF.  He has guided us through the years, shared in our hopes and joys, and grieved deeply with our family and every family when yet another life was lost to this disease.

Peter was the force behind finding the gene for NPC in 1997…unlocking the key and pushing the door wide open in our understanding of this disease ….leading us to where we are today with promising therapies.

Although retired after 30 years at NIH, Peter continues to be an integral part of the research. He has served on our Scientific Advisory Board for 17 years and continues to offer his guidance and expertise.

Peter could not be with us tonight because of health reasons but he sent this message:

‘I wanted very much to attend this meeting since over the years I have come to recognize more and more what a fundamentally important role this foundation plays in both family support activities and the scientific arenas. We have shared together a long and difficult journey and are now particularly beginning to see these efforts bear very tangible fruit that reflects both the mechanistic understanding as well as the evolution of promising therapeutic directions.  I wish you all a good and exciting meeting and will very much look forward to continuing to work with you all.’

In special recognition and to let Peter know how his life’s work has inspired so many we have named our fellowship grants after Peter – the Peter G. Pentchev Research Fellowships.

We are also presenting this sculpture to Peter.  Peter and his wife, Meryl, were never blessed with children. But we all know our children are Peter’s children. He holds our same vision where individuals with Niemann-Pick Disease will have the same chance as their siblings and peers to run and play, to hope and achieve, and to live out their dreams.

Peter has a fondness for good Scottish whiskey. I’m sorry to say Susan Green did not bring any along, but I would like to raise our glasses to Peter in continuing to be that spark of hope …our light in the darkness.”

Peter G. Pentchev, Ph. D., with the "Dancing Family" statue presented him by the NNPDF in honor of his lifetime contribution to the fight against Niemann-Pick Disease.  The statue is hand forged of carbon steel by sculptor Boris Kramer.

A note from Dr. Pentchev: Dear Folks: Thank you so much for the very kind and thoughtful honor you have bestowed on me. We go back a very long way and have traveled a familiar road that has brought us all to where we are today. I can not think of anything more important that I could have done with my life and it gives me great comfort to know we are still a team. Even though I miss greatly the challenges of doing the research myself now, I am immensely grateful that I still understand things enough to marvel at the truly great progress that is now being forged. This would never have been possible if you guys had just run away from the problems that had to be faced. With very warm regards, Peter

[Aug 20, 2009 mem]