When I was asked to put together a quick article on my experience with the trial, I wasn’t really sure what to say. But I will give it a shot anyway. For the past 18 months, I have made numerous trips to Boston to participate in the two-year trial with the Serine supplement. I have become quite familiar with the process to get to and from the airport and the hospital on each end. The folks that are coordinating all of the Study do a great job getting all of our travel and visits scheduled out.
Since I have lived in Florida for the last eight years, going to Boston in November 2013 was a bit interesting. I had not experienced winter in seven years, and there were even some snow flurries to welcome my first visit. I don’t own a winter coat, so I am always the crazy looking person in the airport that isn’t dressed for the occasion.
The study itself is actually quite simple. I get to take this Serine supplement three times a day, that doesn’t really taste so great, but all in all a little bit of bad taste for the potential to stop or reverse any effects of HSAN1 are well worth it. I have not been a big fan of nerve conduction testing or skin biopsies, but it’s a very small price to pay for the doctors to get some quality research information. I have said from the start, that at 40 years old I am not participating in this study to necessarily help me but more to help future generations to come including possibly my children.
Research is quite expensive and I am very happy that the doctors in Boston are willing to do what they can to help generate funds and look for grants in order to continue research. The only way to ever figure this whole thing out is to continue research. I’m glad that the company I work for, Enterprise Holdings, has been willing to donate money each year for the last 9 or 10 years. In the grand scheme of things what they donate isn’t much, but every little bit helps.
Finally, I just want to thank all of the people who help with funding; the doctors that are doing research – especially Drs. Brown and Eichler; the study coordinators Diane, Elise and Kailey; those who give of their time and resources to assist and operate the Deater Foundation; and finally to my wife and kids whose support is vital to my participation.