This week, it turns out she is in the Bay Area and we will have an opportunity to interview her and capture the interview on video. I wish it could be a video-chat session, but we're going to catch up with her before she flies back east.
So, the next best thing is: What are your questions for Dr. Faustman. We will be interviewing her Thursday first thing, so I need you to please send in your questions by the end of Wednesday at the very latest.
I'd like to know if the treatment proves unsuccessful can I have all my donation money back? All kidding aside, my main question is being I am nearing forty years with diabetes do you feel its crucial for me to be involved with the treatment in the near future for it to have a chance to work for me or it likely wouldn't make a difference at this point anyway?
I have two questions. 1) Are there type 1's who are C-peptide negative even with the more sensitive test?
2)Will BCG work in diabetics who have insulin antibodies only?
One of my questions is that same as @Gary, as I'll have had type 1 for 40 years this coming September.
I know they're starting work on Phase 2 trials. Has she an estimate for how long it will take to complete those, and how long after that before we see the results? I'm guessing it will be around 2015 for the results, but I'm hoping it's before then.
Besides fund-raising is there anything else we can do to help move this research forward?
Q1: Can you elaborate a bit further on exactly how your most recent findings differ from those of Dr. Peter C. Butler (UCLA 2005 along with colleagues from the Mayo Clinic), or even the work done in 2006 on the Joslin 50-Year Medalists? In effect, each of these prior studies seemed to suggest some evidence of sustained islet turnover in patients with longstanding type 1 diabetes in a setting of continued inflammation. What I am really asking is whether you can articulate for us, in layman's terms, whether your most research findings have merely validated those prior research findings, or whether something truly different has been articulated?
Q2: Beyond this, the assays you have developed seem to be saying that in a majority of patients with longstanding type 1 diabetes (63%), that most patients have evidence of islet regeneration. Clearly, the new assay is more sensitive than prior measures, having detected beta cell functionality in approximately 63% of longstanding patients with type 1 diabetes. Do you plan to examine those who did not have detectible beta cell function to better understand WHY?
I enrolled in Dr. Faustman's trial in 2009 (or maybe 2010) while I lived in MA. I've been to her lab about 4 or 5 times. I'm currently back home in CO, and it's pretty tough for me to go back. I have another appt. in Oct. of this year (2012).
So, my first question for her is what the protocol is: Will I be needing to go back every six weeks or so for a shot? When will she start the actual shots? When I went back last Oct., I expected to get a shot, but I just had more blood drawn.
My second question is what they are looking for? I do not test positive for GAD antibodies. So, it seems that I do not have a current autoimmune attack going on. BTW, I was diagnosed with T1 27 years ago, and I've been told that after that length of time, it's not unusual not to present with antibodies. I asked her able assistant Nick about that. He said they were looking for specific markers on the "2A protein". He also told me that I was deficient in that protein. What is it they are looking for with that protein? The little bit of research I've done into it is that it is implicated in cancer.
My last question is how long will the trial continue for. I try to time my appts. at the lab with the pumpers support group in Boston. I hope to keep going back there just to see those folks - they are great. BTW, anybody in the Boston area who is pumping or interested in pumping should check that group out - they meet the second Sat. of every month in Woburn.
I wonder about this one too. My daughter has T1, Hashimoto's & vitiligo. She participated in the Defend 2 trial for otelixizumab, which tried to extend the honeymoon period. The trial doc said if it worked, it might also help the thyroid. So would this have the same potential?
I asked Dr. Faustman's assistant Nick about this. My daughter was recently dx'd with Grave's disease - like Hashimoto's, except hyperthyroidism instead of hypothyroidism like Hashimoto's.
Both diseases are autoimmune in nature, and Nick replied that they were specifically targeting both those conditions. I'm sure it will be a different protocol, but they should gain a lot of good info from this intitial trial with the BCG.
I admire Dr. Faustman's work tremendously and would love to help out in any way I can. I know she's looking for blood donations of both D and non-D donors. My questions are these:
1. What is the biggest obstacle to making progress towards the ultimate goal? Is it (a) lack of funds, (b) lack of biological donations/specimens, (c) regulatory environment, (d) challenges in actual scientific research, or (e) something else?
2. I often read theories (speculative and unsubstantiated, I should add) that the for-profit companies that profit through sales of diabetes care supplies are conspiring to suppress any sort of cure that will threaten their business. Do you believe this to be true, and have you specifically had anyone try to stop you from advancing your research?
3. So far in your research, have you been able to identify what characteristics might make someone a "favorable" recipient of BCG treatment? In other words, to follow Gary's earlier question, what could we as PWDs be doing NOW to qualify when the treatment does become available?
