Thanksgiving is my favorite holiday; the name itself verbalizes an action that we should all practice more frequently. Our personal family tradition is to gather with a group of friends we have known for over 40 years, and this Thursday marks our 35th annual celebration. Ironically, it was on Thanksgiving weekend 12 years ago that a flying wheel broke my son’s neck and introduced all of us to the world of spinal cord injury. Our second family, the ones with whom we share Thanksgiving, were the first responders and have been loyal supporters in the years since.
That Thanksgiving event forever changed my life, and in time led to the founding of Unite 2 Fight Paralysis. I am NOT thankful for my son’s injury, don’t believe it happened for a reason, and am not here to inspire anyone. But once SCI came into our lives, it became clear that I should use the skills I have to fight its devastating effects. I am grateful that U2FP has given me a way to do that.
Last week I attended the “Partnering for Cures” conference in New York City. As a first-time attendee, I was admittedly overwhelmed by the level of brilliance, passion, & expertise in the room. Presentations and panel discussions covered every stop along the continuum from basic research to clinical practice. Patients, advocates, funders, and regulators joined in lively conversations about how to achieve results. I met representatives from a variety of disease groups, including many working on behalf of so-called “rare diseases” with small patient populations as in SCI.
I am still processing all of the ideas and information from the conference, but my mind keeps coming back to the overriding theme of “patient-centeredness and participation”. We have entered an era where, thanks to patient demand, we are gaining a more influential voice in decision-making, from what research to fund all the way to designing clinical trial endpoints. It is now our responsibility to expand our knowledge and commitment in order to provide educated input to these processes.
What role can U2FP play in this evolving paradigm? In the world of spinal cord injury, the patient movement is just beginning. For a variety of reasons, other disease groups are farther along and many have successes to report. We have the opportunity to learn from their achievements as we chart a path for the future.
To date U2FP has dedicated most of its resources to patient education. And BTW for those of you who object to the word “patient”, if you want to be part of this movement you’d best get used to it. As one P4C panelist said, “Nobody wants to be a patient”, but I daresay it’s not worth quibbling over. Spend your energy learning about the details of SCI and what it will take to repair and recover.
U2FP has a bucket list of possible projects to get this community moving toward greater participation, including things like expanded education, data collection, increased partnering, and organizing advocate activities. We can’t undertake any of these projects without your help, however. At the moment our resources are stretched to the max, and we need more funding to take on anything new.
As we enter the season of “Giving” and “Thanks”, please consider donating to U2FP so we can continue to expand our services and lead the SCI community toward 21st century cures. Our “Giving Tuesday” (Dec. 2 ) campaign is now active, and you can support U2FP year-round (and especially at the holidays) by using our Amazon Smile gateway for all of your Amazon shopping.