Senate Commerce Subcommittee on Science, Technology, and Space – Testimony by Susan R. Fajt

Date: 07/14/2004

July 14, 2004

Ms. Susan R. Fajt

Spinal Cord Injured Recipient of Adult Stem Cell Therapy Using Olfactory Mucosa Transplantation

My name is Susan Fajt, and I want to thank Chairman Brownback and members of this Committee for this opportunity to tell you of the adult stem cell treatment I received for spinal cord injury in Portugal by Dr. Carlos Lima, and its results to date. But first, allow me to share with you some basic facts about spinal cord injury to explain why I chose Dr. Lima’s procedure.

On November 17, 2001, I suffered a spinal cord injury and became paralyzed in an auto accident. My life has changed in ways unfathomable. Emotions run strong and decisions must be made to end needless suffering. I chose to live and fight for a cure. Perhaps paralysis has robbed me of my freedom, but it can never take away my belief that a cure is attainable through research. There are currently no effective treatments available for spinal cord injury in the United States.

When I was injured I was twenty-four years old, and I loved life more than you can imagine!

Today, I have been given a great honor to tell you the story of my quest for a cure for this catastrophic condition. Once realizing that my injury was no longer a nightmare but a devastating reality, I set out to find the best possible treatment in hopes I would be cured, and recover everything I had lost.

After tears of pain and years of searching, I found, through my own research, Dr. Carlos Lima in Portugal. My treatment with Dr. Lima took place on June 17th, 2003. I was the 11th patient in the world, and the third from the United States, to receive this treatment.

Dr. Lima used an adult stem cell treatment that uses an Olfactory Muscosa graft to promote growth of axons to bridge the site of contusion, in my hopes that functional recovery would help me to once again walk, run, dance, and do everything I would love, not to mention normal daily activities which are so easily taken for granted, such as bowel and bladder control.

Only part of my dreams has been attained. But I have come farther than my American doctors ever thought. My most recent MRI took place 5 days ago. The doctors were in disbelief at the improvement they saw where my spinal cord had been injured. I have recovered some functional improvement through Dr. Lima’s procedure, such as the ability to hold my bladder and at times even void on my own. Sensation has been restored, though it is not completely normal. When concentrating I am now able to contract my thighs slightly; once again, this was also impossible before my surgery in Portugal.

But most important on my way to recovery is that I can now walk with the aid of braces. I am now preparing to shed the shell of this wheelchair, which has confined me for over two years, to more and more use my braces and walker for mobility. This is something my doctors here in America told me would never be possible with my level of injury and to accept my fate. With Dr. Lima’s adult stem cell based therapy, I have accomplished much more than my U.S. doctors said was possible. But this is only the first step to a complete cure.

The next step is to find combination treatments as well as an excellent rehabilitation program that will compliment the results of Dr. Lima’s surgery so that a complete recovery can be obtained from a spinal cord injury. I have literally gone all over the world in the quest for a program that will allow me to benefit as much as possible. Unfortunately, no such program exists to date. Through love and faith, my father and I have taken upon an endeavor of creating new devices that assist me in working two to three hours each day to reach my maximum potential. In the near future, I hope to open a rehabilitation program so that others can benefit from our innovative equipment.

Spinal cord injury is one of the cruelest injuries to affect the human condition. It causes extreme neurological pain, and excruciating psychological trauma amongst other things.

Fortunately, I am not built to accept failure, so I plead with you to hear my cry for funding and other support for therapies, such as the one I received, that will free me and millions of others who also suffer in this primitive wheelchair.

A cure for spinal cord injury will not be an easy task. However, where there is a will there is a way! In addition to increasing funding to record levels, increasing public awareness about spinal cord injury and about treatments such as Dr. Lima’s, which are showing real results, is imperative and desperately needed.

The U.S taxpayer pays over $30 million per day on care for spinal cord injury and only $68 million per year in a search for a cure. Common sense tells me that by taking away two days of our care and in its place use this money for a cure, time will inevitably be on our side.

Medical research in the United States is more advanced and far more superior to any other country in the world. Yet citizens, such as myself, risk their lives and are forced to seek treatment in foreign countries because this technique is unavailable in the United States.

Researchers need to be held accountable by the U.S. government to design and implement research that results in human clinical trials. No more research for the sake of research. Furthermore, research dollars need to be invested in staggering amounts for rehabilitation programs, as we have nothing of substance to help us recover after sustaining a spinal cord injury.

I ask you for just one moment to imagine if I where your daughter, wife or loved one. Would you help me with my quest and take the opportunity you have before you to promote and publicize this research, which has already helped me, so that I may one day dance the dance of life again, or would you allow me to suffer needlessly?

The matter of funding medical research is of great national importance, and I plead with you to do what your heart tells you. Please re-direct the research in this country so that more resources and public awareness is given to treatments like the one I received, treatments actually aimed at curing injuries, so people will not have to go to other countries for them. Free us, and in return at the end of your life you will know you have left this world a better place than what you have found it.

In closing, I will echo the words that the Honorable President Ronald Regan spoke to Gorbachev, “if you seek peace–tear down this wall!” Members of the committee, if you seek cures for the millions of Americans currently suffering from spinal cord injuries and diseases, tear down these walls and free us from our wheelchairs!

Thank you.