Hi guys.
I just wanted to give a friendly update that as of late last night, I am back from Boston.
To be honest, I cannot tell you how nice it was to be able to sit and talk with people who not only believe us, but actually show great interest in our condition. Personally, I have had just horrendous luck with doctors, so this was a very different experience, to say the least.
Dr. B is a very nice man with a great “bedside manner”, and he was kind enough to answer all of the questions I had for him. When the question of treatments came up, he did say that this is designed so that we may understand how to properly understand and treat the damage that has occurred. He actually laughed a bit, and while I do not recall the precise wording, he said “This is Harvard. We would not be spending any time on this if we did not expect very important findings”. I feel he was being very sincere.
I really enjoyed working Allen P. He spends a very good amount of time with you, answers any and all questions you have about what is going on to the best of his ability, and it was nice to see just how interested he is in our situation. He made the whole experience much, much easier, and I really owe him a debt of gratitude. If you can participate in the Harvard study, this is the guy you want to reach out to.
In all honesty, I was overwhelmed in dealing with what I thought all of the details would be, but as it turns out, it was much more simplistic than I thought. There is a nice hotel right up the street from the clinic called the “Inn at Longwood Medical”, and they actually offer a discount if you are involved in any way with the hospital (just tell them Brigham & Women’s). You only go for three days total, which are the first day of the study, an off day so they can go over their initial results, and then the last day of the study. So, we are not required to keep going back and forth. It is just this one time trip. Also, Allen P informed me that they are set on skin biopsies, which is a positive.
I had the pleasure of meeting the brother and sister in law of D. Stewart. They are hurting an awful lot, but they are great people and have been extremely supportive of us. While the circumstances of them coming into our lives is just plain awful, there is no doubt that our cause is greatly strengthened by having people of this type of character on our side. They are absolutely wonderful.
The single most important thing is that we get the rest of the people needed as participants. I imagine a situation where when these research studies are announced, they actually have to start turning some of us down within the first few days because they are swarmed with people wanting to participate, and they have already filled up. There are enough of us for this to happen. Please, if you have not signed up for the Harvard or Baylor studies, do so ASAP. It is a process as you all know, so the quicker we do this, the quicker we find out what we need to know so we can start properly treating our condition.
I was able to sell some personal belongings to make the trip, but I know that others might not be int he exact same position to do so. If you have any questions about financial assistance, please contact the PFS Foundation and see if they are able to make any kind of contribution to your trip. I do not have any details on this, so they will have to answer those questions.
Anyways, guys, we must get these studies completed ASAP. If the process is slow, we will lose momentum, but if we bombard them asking to participate, it will help to create the snowball effect we are looking for.
If you have any questions you think I might be able to help you with, please feel free to send me a PM and I will do my best to answer.
Thank you.
Thank you for doing this, however, and thanks for your update!