Hi Group -

As many of you know, I recently had the privilege of speaking to the scientists and officials of Genzyme Corp. Genzyme, along with its corporate partner, Diacrin, is doing the research on xenotransplantation which resulted in my having the surgery for the implanting of pig cells into the brain.

That meeting has resulted in an article in their newsletter. I thought some of you might find it interesting. Here it is.

In September of 1996, Jim Finn, 51, of Newport, R.I., underwent surgery for Parkinson's disease using NeuroCell*-PD as part of a phase 1 clinical trial, sponsored by Genzyme Tissue Repair and Diacrin Corp. Recently, Jim visited Genzyme to describe how the NeuroCell procedure has made a number of positive changes in his life by helping him to do many things each day that had before been almost impossible.

Jim, a quick-witted man who credits his sense of humor in helping him to maintain a positive attitude, developed Parkinson's disease (PD) in his early 30's. The symptoms he began to suffer - with increasing severity over the years - included decreased manual dexterity and mobility, poor speech, inability to write clearly, extreme fatigue and mild muscular tremor. Since drug treatments for PD are only typically effective for a period between 6 and 12 years, Jim and other Parkinson's patients live with the fact that time usually isn't on their side.

Parkinson's disease is a chronic disorder in which certain brain cells, called neurons, deteriorate. The exact reason why this occurs is not known. These neurons are vital because they produce a substance called dopamine, a chemical "messenger'' in the brain that helps the nervous system control muscle activity. When these neurons are destroyed, dopamine is not produced at the normal rate causing a wide range of neurological problems for the patient.

Three years ago, after he had already been using a number of different medications for PD such as Sinemet CR and Amantadine, Jim's doctor suggested that he consider "xenotransplantation". Scientists at Diacrin Corp. discovered that the brain cells of pig fetuses are very similar to the brain cells of humans. In the xenotransplantation procedure, the fetal pig brain cells are transplanted into the patient's brain to replace cells destroyed by Parkinson's disease.

GTR and Diacrin formed a joint venture in 1996 to co-develop and market NeuroCell-PD which, to date, has been used in a phase 1 clinical trial involving 12 patients and a phase 2 clinical trial that is expected to include up to 18 patients. Jim said when he first learned about the experimental procedure, he was very anxious to try it.

"Medications help control the symptoms but they lose their efficacy over time," Jim said. "By the time of my xenotransplantation, I had been dealing with PD for about 17 years and was considered to be in the 'end stage', meaning there was nothing more that medical science could do." Because he was entering the end stage, Jim's doctor, Dr. Robert Feldman of the Boston University Medical Center, referred him to Dr. Samuel Ellias who works as the medical center's liaison to GTR and Diacrin. Due to Jim's ength of time with PD - an important indication point for NeuroCell-PD - and his willingness to undergo xenotransplantation, his doctors found him to be an excellent candidate for the procedure.

Prior to the procedure Jim had to undergo a battery of tests ranging from examinations of his motor skills to CAT scans, MRI scans and even a PET scan. ( A PET scan is a Positron Emission Tomography scan, an imaging technique used to detect information about body chemistry.) Jim said the PET scan is "similar to an MRI but your head is tied down for two-and-half-hours ... and they inject you in one arm while drawing blood out of the other. At the end of that day I was a complete wreck!"

But when the day of his operation finally arrived in September of 1996, Jim said he was grateful for how smoothly the procedure progressed considering the fact that it was, after all, brain surgery. Although it might seem hard to imagine, the patient must remain conscious during the operation. Jim, who was awake as Dr. James Schumacher performed the surgery at the Lahey Clinic in Burlington, MA, said he was surprised at how quickly he was released after surgery.

"The next morning - are you ready for this ? - I was discharged," he said. "It sounds impossible, doesn't it?" But then, after returning home, Jim began to suffer severe headaches and was unable to eat without becoming nauseous. His doctor told him this was to be expected and after a couple of weeks of headaches and weakness, Jim began a road to recovery that continues to this day.

He has chronicled his improvements on a web site which serves as an informational forum for other PD patients. While his doctors continue to monitor his progress with regular check ups and tests, Jim has been transformed from a person who could barely stand before the operation, to someone who is proud to say that his walker and wheel chair are now "happily collecting dust in my garage." Nearly three years now since his operation, Jim's progress - and his enthusiasm - is overwhelming.

"The differences are amazing!" he said. "This is a progressive disease. Well, that progression has stopped and, in fact, has been partially reversed. There was measurable improvement only three months after the operation. I don't think the doctors even believed it at that point but at the six month point, they were no longer skeptical. I can now do many tasks that I couldn't do before."

Although the tasks he talks about can be time-consuming, like being able to button a shirt even though it can take up to five minutes, the progression of his improvement has made an immeasurable difference in his life. Things that were difficult for him before the surgery - such as using utensils during meals, writing, tying his shoes - have continued to become more manageable over time.

Another benefit of the procedure was that at the 12-month review point, Dr. Ellias told Jim that his brain was showing bi-lateral improvement - meaning improvement on both sides of his brain - even though his NeuroCell-PD implant was uni-lateral, that is, performed on only one side of his brain.

"The fact that the results were bi-lateral was a great bonus," Jim said. "And the fact that there have been no side effects is obviously good for me, good for the Parkinson's community, and good for Genzyme and Diacrin. It's that simple."

Jim was recently invited to a NeuroCell Program Review meeting at Genzyme in which he spoke about his struggle with PD over the years and the progression of his improvement since his surgery. Displaying his unique sense of humor at the meeting, Jim wore a pink pig pin on his jacket and placed a toy pig he calls "Priscilla" on the table in front of him as he spoke to the group. During his presentation, Jim thanked the NeuroCell team for "allowing me to bask in the reflected glow of your achievements and I wish you Godspeed in your quest."

Among the more than 30 Genzyme and Diacrin employees in attendance during Jim's presentation were Tim Surgenor, president of Genzyme Tissue Repair and Alodia Ruiz, NeuroCell program director.

"You are our inspiration," Alodia said to Jim after his presentation. "You make us work harder and keep us dedicated to our mission."

After the meeting, Alodia said "We invited Jim because we knew there would be mutual gratification for all involved. Those of us that work in the NeuroCell program get a lift every time we talk to Jim and the other patients with PD. Jim and the other patients also feel good about having the opportunity to remind us that our work is very important and not complete by any means. They keep my spirit soaring when things get difficult in the program. We are proud of our work, mainly because this therapy has the potential to change so many lives for the better."

Tim Surgenor added, "This is why we are all here at Genzyme - for the patients. Many of us don't get to see the patients but it takes a lot of people at Genzyme to make a program like this happen. It takes people who are willing to be pioneers and willing to take a gamble on such a complicated and cutting-edge program. NeuroCell is not a typical biotech product."

While Jim's improvements since surgery mark one of the NeuroCell program's most successful cases to date, Tim said the phase 2 clinical trials will provide even more definitive information due to its prospective randomized design which includes a control group. He said there were at least three other patients in the phase 1 trial who showed "remarkable" improvements while three other patients showed some improvements. The remainder of the phase 1 patients did not show any improvement at all, Tim said, and one patient died due to complications not related to the operation. A study of that patient's brain provided evidence that long-term engraftment had occurred.

The last surgery in the phase 2 NeuroCell-PD clinical trial is scheduled for August. Results of the study, which will be used to formulate the program's next steps, will be available next year.

"We hope to see many more patients like Jim," Alodia said.

Jim, a sports car enthusiast and electronics buff, said the success of the NeuroCell-PD procedure has also allowed him to resume his favorite hobbies. He likes to tinker with antique radios as well as his convertible 1980 Triumph TR7, a classic British sports car.

"My radio hobby is natural," he said. " I have been very involved in electronics since I was a kid - and that's a long time ago! I was such a nerd with ham radios and science fairs. And I always liked the look of the TR7, there's nothing on the road like it. I bought mine in 1991 and spent six months getting it to run properly. I did all of the mechanics myself; new exhaust, water pump, alternator, brakes, and lots of repairs to the electrical system. The doctors said it wasn't possible - I guess they were wrong. By 1995, however, it was almost impossible for me to do anything to it - British cars need near-constant attention. But now, I can work on it again, albeit slowly."

Jim, whose case has been chronicled on CBS's 60 Minutes and PBS's Health Week, credits his family and friends for being at his side through his years of battling with PD. He particularly noted the long-time support of his good friend and care-giver, Ray Racine. Jim also said a lot of his strength to fight has come from within himself.

Although he is optimistic about the progress he has made, Jim is quick to point out that there is still much work ahead for scientists in the fight against Parkinson's disease.

"It is important to note that while my symptoms are much less pronounced, I am not cured," he said. "As I've often said, I believe this highly-experimental research may unlock the secrets of this horrid affliction. Let's hope."

A primary example of his positive attitude and use of humor to cope with the hand he has been dealt was made clear in a comment Jim made during his presentation to Genzyme employees in June:

"I consider myself to be very fortunate and there have been no side effects," he said. "Although I do have a tendency to wallow around in mud."

For more information re: Jim Finn's case, visit the web site at:
http://www.geocities.com/janet313/pienet/finn/

Contact: Christopher Comfort, corporate communications.

As always, feel free to write directly to me if you have any questions.

Regards -

Jim Finn