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I went to Boston in May, and I asked if I could be considered for inclusion in a pig-cell study. I am so impressed both by your courage, and the progress you have made. The neurologist at Boston Univ. said that the pig-cell study wasn't open right now. Let me know if you hear of any changes. Continued good luck with the work you are doing to publicize what is happening to you. Ivan Suzman :-) On Tue, 27 Jul 1999 12:56:30 EDT Jim Finn <[log in to unmask]> writes: >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. > >START > > NeuroCell-PD Gives Parkinson's Patient a New Lease on Life > > 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 > length 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/SoHo/Village/6263/pienet/hithgang/hitjimf.html > > > > Contact: Christopher Comfort, corporate communications. > >END > >As always, feel free to write directly to me if you have any >questions. > >Regards - > >Jim Finn ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 49/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses deg. F :-) ********************************************************************