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A peculiar blog post title, but one that I’ve been thinking about for a while now. A running joke, if you will, with several Congressmen and their staffs has been, “I’m never going to come in here to ask for your support for less funding, especially when it comes to biomedical research”. Although I’ve always considered myself to have conservative values, there is a reality that settles in when you are diagnosed with an incurable disease, and in my case two, Parkinson’s Disease and Essential Tremor. The realization that what you experience in your daily life with incessant diseases is not just about you, but about many more people in the United States and around the world who live their battles daily, some with no one to offer them support.

Through the years of advocating for what is important to the Parkinson’s community, and for the Parkinson’s community, I say that what I speak out on is not just about me, but with a collective voice, seek continued funding for biomedical research that will yield better therapies, treatments, and the eventual cure for all of us.

An important aspect that I focus on is the assurance that funding, federal and otherwise, that is provided to Parkinson’s Disease researchers in all parts of the country is being used in the best way possible, for the good of those seeking relief from incurable diseases and conditions. Having said this, and knowing that concessions have been made with my personal views of spending, the work that several of us (and hope that many more join the ranks) through the patient-developed and patient-led, Parkinson’s Movement (an initiative of the Cure Parkinson’s Trust in England) have been working on is an initiative that would require patient engagement throughout the clinical trial process. A coordinated effort that brings together the best resources available from national and international Parkinson’s Disease organizations brings the patient voice to the forefront, thus allowing to require that all clinical trials that recruit volunteers have a steering committee (otherwise known as a “recruiting committee”) from the inception of the trial so that an action plan is in place to help assure timeframes and benchmarks are on target in the recruitment and retention of trial volunteers.

As patients and advocates whom, at this point in time, are not involved in what grants are awarded, and to whom, through the peer-review process, being part of the research team through the steering committee is a huge step in helping build working relationships. Perhaps this is the slight change in thinking that will make clinical trials more effective and efficient, thus providing data that federal funding for biomedical research, that requires volunteers to participate, is being used for its intended purpose with no delays (which further increase the amount of funding needed).

Then, the issue of seeking support for federal funding for biomedical research, is one that gives us reason to believe that we had a part in the overarching goal of continued federal funding, but also in making sure that the funds are used wisely and for their intended purpose in clinical trials (without wasting what we have worked hard as advocates to obtain).

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One thought on “Conservative Values and Incurable Diseases – Not The Ideal Mix, But It’s Not Just About Me

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