It is my regret to inform those reading, as a founding member and first director of the Quinolone Vigilance Foundation (QVF), I am forced to withdraw my support of the QVF and have no confidence in its current leadership.
My history with the QVF goes back to a handful of floxed individuals who worked together fostering research and advocacy for Fluoroquinolone (FQ) Toxicity. We dreamt of starting a non-profit that would formally congeal this much needed research under one umbrella. Out of this dream the QVF was born and I was selected to be the first Director. Unfortunately, shortly after, changes at my job forced me to work long hours for many months, while floxed, in order to secure health insurance and income for my family. Doing this was detrimental to my health and forced me to step down and away from the QVF and FQ community. Leadership was turned over to others.
With that brief background as the context, my comments are being offered today knowing that I am intimately familiar with the impetus and goals that created the organization. The QVF, being a 501C3 established to foster research and advocacy for the entire FQ community, is held to a very high standard. My comments are not designed to disparage any of those hard working individuals who, in the past, have labored long in the establishment of the QVF or those who have and do support the QVF publically.
Starting in January of 2015 I embarked on a personal undertaking to take a look at the FQ community. My main goal was to look at the community from behind the scenes, to get an idea who the leaders are within the community, communicate with those leaders, what their differences of opinion are, and what was driving those opinions and directions. Next, I ascertained the current state of FQ research. Finally, I then took a hard, long, unbiased look at how the QVF fit into that picture both from a research standpoint and a social standpoint of view.
My original intent was to assist the QVF in re-establishing FQ research ties that had been lost over the last couple of years. It was certainly not my intent to stop supporting the organization. However, after looking at the totality of the information, I came to startling and sad conclusion; the problems being experienced by the QVF, I felt, were mainly internal, as opposed to external.
This discovery ran counter to what I had expected to find. I was led to believe and assumed that external problems, such as strong community opinions, personalities, and motivations were the driving forces that were hampering the QVF’s meaningful forward momentum as a research driven organization. Although there are plenty of conflicting personalities and motives and there always will be, I was wrong in my initial assumptions.
It is my opinion that the organization, in its current state, runs counter to its founding premise and goals, has suffered from a form of mission drift and has morphed into an organization counter to its founding purposes. Wanting to remain truthful, I did not want my perceived public perception of the organization to run counter to my private feelings of non-support.
Keeping in mind that the QVF was originally designed to primarily initiate and foster FQ based research and to a lesser extent participate in advocacy, I formed several opinions as to why I felt that the organization is running counter to its original designs.
- It is my opinion, that the current board, in its makeup and structure, creates an environment that does, and will, prohibit the fostering, creation, or support of viable FQ research, something that is needed to fulfill the goals of the organization.
- It is my opinion, that the current board is too nepotistic in its make-up and does not contain an accurate reflection of the FQ community (I now believe this is corrected but I cannot get anyone from the organization to confirm or deny this).
- It is my opinion, that the organization’s leadership did publically support WEGO Health, a company with ties to pharmaceutical companies that manufacture and sell both name brand and generic FQs.
- It is my opinion, that the current volatile state of the leadership has left many community leaders, former ambassadors, and participants feeling alienated and disenfranchised.
- It is my opinion, that the organization maintains relationships that are too closely aligned with several large law firms and could create unnecessary misconceptions and perceptions about credibility.
- It is my opinion, that the organization, is running too autonomously and lacks constructive ways to objectively look at critical feedback both internally and from the community and institute the necessary checks and balances in a fair manner to present factually accurate data regarding FQs in the public arena.
Although I found many, many more areas that I believe are in need of critical attention, these examples highlight some of the major issues.
At a time when we as an FQ community continue to expand our public recognition it is important for all entities in our community to explore collaborative approaches that promote the community’s goals.
The QVF was to undergird that process by acting as an umbrella to coalesce FQ research to support the community. It is my opinion that the QVF has failed in areas of community cooperation, research partnerships and transparency. Unfortunately, I believe, that the QVF’s public appearance runs counter to its actual current state, especially in the main area of FQ research, something I am very intimately familiar with. Unfortunately I believe the QVF’s problems, especially in the area of research, are irreparable without drastic organizational change.
I recognize that there are many good people who support and have contributed to the organization. I want them all to know that my regretful decision is not politically motivated but is based on my opinion of the ability of the organization to complete its mission as originally intended. I would be willing to civilly discuss my opinions with anyone who wishes more information or clarification.
Therefore, while withdrawing support for the QVF, I do support other groups and the many hard working women and men in our community that are working to end FQ toxicity, and advocate for the thousands of victims worldwide. I stand ready and willing to work constructively and cooperatively with those other entities to continue to promote the communities’ goals through a variety of means.
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