If you are a regular reader of my blog you already know I have been doing a great deal of writing on stroke awareness and PFO education. I gladly accept interviews when asked to talk more about this issue, especially when it can help further the discussion about stroke, migraine and the possibility of PFO closure. While I have been making consistent progress in gaining national awareness I have not yet reached my goal (Oprah Challenge) of speaking with Oprah. For example, I was interviewed recently for the NY Times by Barry Meier (Wed. January 14,2009) and my mug even appeared on the Cover of the Business Daily section
Why I am grateful, it is not enough:
Barry Meier’s NY Times article focused on the business end of the PFO/Stroke/FDA debate, but he did not cover the other side, the human side. Upon Mr. Meier’s request I had provided details of my own stroke journey which lead up to PFO closure, as well as other stroke survivors who gave me permission to share their contact info with Mr. Meier because they wanted to let others know about their experiences, again the human side. If you are one of these survivors, or want to imagine having to consider making a decision to close a PFO-please take the poll at the bottom of this post. I’d like to show more of the human side of perhaps why as Mr. Meier pointed out in his article “it has been difficult to find enough untreated patients to mount a study to prove their effectiveness and safety.” After speaking with many, many stroke survivors that have a confirmed PFO it is my consensus that they don’t want to wait around for another stroke to see if they can “opt in” for PFO closure. They want the hole fixed ASAP!
Here’s where you can help and where Mr. Meier’s article already may have provided a timely boost:
I continue to need your help to complete this journey. For example, I’ve sent articles to Dr. Oz (a cardiologist often seen on Oprah), contacted Oprah.com many,many times, and made my intentions known to Tedy’s Team, Tedy Bruschi and his wife, and the American Stroke Association (Boston and RI affiliates)- I still need your help. Sidebar:[ By the way, several good things followed from the NY Times Story: Other writers contacted me (topic for future post)and are considering stories, as well as the countless health bloggers that picked up the story worldwide and posted it internationally.
Just one example….
Here’s how one reader already helped without knowing it:
A reader from the “early days” of my blog who shared his story and frustrations with the medical delays and uncertainty he had experienced recently contacted me again. He originally read my story and my Oprah Challenge. He shared his frustrations with knowing he had a PFO and having to elect for medical management of his PFO or perhaps enroll in a clinical trial and either receive a septal occluder for PFO closure or receive a possible “sham” procedure as part of the study. (By the way, If you would have interviewed him Mr. Meier you would have known why the enrollment numbers in clinical trials are low…) Anyway, this reader recognized my name in the NY Times article, and instantly “morphed” me on to the Oprah show.
A reader from my blog noticed me in the NY Times and sent me this “touched up” photo to help me visualize my goals.
What can you do?
Please take a moment to post your own comments or ideas at this link.
While this page has a “fun” tone I hope you know I am serious with my stroke awareness plan and hope you can help me follow through with my plan. After all, the Oprah log worked for Dave Letterman.
With enough brains and motivation I believe anything is possible… Thank You Barry for giving this story your attention. By the way, do you know Oprah?
Summary of My Reaffirmed Goals:
My Goal: I have been working at trying to get through to Oprah and Dr. Oz to suggest a show about migraines,stroke and the heart connection and ideally developing a show for May 2008 or 2009 (May is Nat’l Stroke Awareness Month). Additionally, I have been working to try to get Tedy’s Team, and Tedy Bruschi of the New England Patriots to speak nationally (to Oprah) about his stroke and his new book Never Give Up.
I appreciate any and all comments, leads, ideas you would be willing to provide here:
Take this PFO Closure Poll