There is a non-profit, charitable foundation devoted to funding research and raising awareness about the dangers of fluoroquinolones and fluoroquinolone toxixity. It is called The Quinolone Vigilance Foundation (the QVF) – www.saferpills.org.
Following is some information about the QVF:
History and Purpose
The QVF was founded by 4 floxies in 2009. Their goals were to review the existing scientific literature that addressed adverse reactions to fluoroquinolones, recruit and network medical researchers, and stimulate new research into fluoroquinolone toxicity. It became apparent that a national non-profit was necessary to establish the professional credibility of the QVF and so that the QVF could act as a vehicle to raise the funds needed to drive scientific research. The QVF exists to stimulate and fund university-level peer-reviewed research that will inform the medical community about severe adverse reactions to quinolones/fluoroquinolones.
Since April, 2012, the QVF has been registered as a charitable organization, it has received its EIN from the IRS, registered with the State of New Jersey (where the QVF is headquartered), registered with the proper federal agencies, and written up and filed Articles of Incorporation. In April 2013, the QVF filed for 501(c)(3) status with the Internal Revenue Service, where its status as of 01/29/14 is pending. The QVF can operate as a non-profit while its 501(c)(3) status is pending. It is anticipated that receipt of the QVF’s 501(c)(3) status will be received in 2014.
While the QVF does do advocacy, the main focus of the foundation is research. When research contracts are entered into by the QVF, the QVF officers sign confidentiality agreements, which note that the research cannot be discussed publically. For this reason, much of what the QVF does is behind closed doors. The officers of the QVF ask for understanding among floxies in realizing that even though much of what goes on in the QVF cannot be public, much is going on. Per Rachel Brummert, Executive Director for the QVF:
“My day includes talking to the medical community, soliciting other major universities to do studies, reaching out to other agencies, making phone calls and doing e-mails. We give up our weekends, evenings, holidays, etc. to do our jobs, and we do not get paid for what we do. In everything we do, we keep in mind that the floxie community relies on us, and we are passionate about what we do for that very reason. We understand that it is frustrating that we cannot share more about what we do. We share that frustration, however, we do it to protect the community and the people we work closely with. Unfortunately, research is slow, and expensive. We are fully committed to doing what is necessary to fully fund the studies we initiate so that we can answer the questions of “why did this happen” and “how can we fix it”. The floxie community deserves those answers.”
As a research organization, QVF’s mission is to:
• Network medical professionals and researchers regarding adverse reactions to quinolone antibiotics.
• Foster, initiate, and direct fundamental research to discover underlying toxicity mechanisms.
• Fund research that will produce the most promising results.
• Translate new discoveries into effective medical practices and therapies to help alleviate individual suffering.
• Develop and apply discovered knowledge to educate the medical community and inform best practices for public health.
Information about some of the research that the QVF is involved in can be found through the following links:
Dr. Mark Noble site: http://www.urmc.rochester.edu/people/23095977-mark-david-noble
Dr. Beatrice A. Golomb’s C.V.: http://www.fqstudy.info/Fluoroquinolone_Effects_Study/About_Dr._Golomb.html
Advocacy and Outreach
Though the QVF is primarily focused on research, some advocacy and outreach activities have been conducted.
In November, 2012, the QVF partnered with another foundation to do a 5k walk/run, where awareness materials such as rack cards, wrist bands, awareness cards, etc. were distributed.
In November, 2013, Matt Sorrell, husband of QVF Treasurer Christina Mathos-Sorrell, ran the NYC marathon on behalf of the QVF. Matt was able to raise money for the QVF and increase awareness about fluoroquinolone toxicity through running the marathon and collecting donations.
In December, 2013, The QVF did an online auction, put together by Executive Director Rachel Brummert and QVF fundraising director Michelle Fewer.
The QVF plans to hold the events listed above annually, and discussions are being conducted about other ways to raise funds.
TheQVF also sells merchandise. The QVF store can be found at www.cafepress.com/quinvigil.
The founders of QVF reached out to fellow victims of fluoroquinolone toxicity to establish a presence in the online community. The board of directors was created, and ambassadors/advocates from all over the world began volunteering to help. Currently, the QVF is an international organization represented in six countries: the United States, Canada, Ireland, the United Kingdom, Belgium, and Australia.
The current volunteer staff positions are as follows:
Rachel Brummert – Executive Director and President of QVF
Matthew Arnold – Vice President
Alice Broussard – Corporate Secretary
Christina Manthos -Sorrell- Treasurer
Michelle Fewer – Fundraising Director
Dr. Deanna Minkler – General Board Member
Donna Schutz- Ambassador Coordinator
Lisa Bloomquist – Communications Director
Lori Boz- Consultant
More information about the QVF can be found on www.saferpills.org.