Tuesday, April 29, 2014

Running in the (Pouring) Rain: Myeloma Crowd raises $10k!

On Saturday, William and I joined other Myeloma supporters in Utah and we ran the Thanksgiving Point Tulip Festival Half Marathon/5k. It was super fun and very extremely wet. It poured rain. By the time we were done, we were drenched. But who cares? We had a lot of fun and, best yet, we raised $10k for the Myeloma Crowd to help support clinical trials for multiple myeloma.

The only way treatments and cures for disease are discovered is through clinical trials. Many patients do not participate in clinical trials because they don't want to get a placebo or be a guinea pig. But the reality is that if you participate in a clinical trial, you're getting the best treatment available or the next wave of "best" treatments. And oftentimes, patients don't participate in a clinical trial because there insurance won't cover the cost of treatment or the patient cannot afford to travel to where the clinical trial is taking place. Raising funds to support clinical trials is essential.

A few days prior, Jenny and I met with a professor at BYU to discuss getting an intern to help with the Myeloma Crowd efforts. To that end, we are giving a presentation to his students next week about multiple myeloma, how we were diagnosed, how the disease is treated, and our efforts to help find treatments and cures. We are crossing our fingers that we get some help!

And a few days before that, I had a very long chat with Senator Lee's (R-UT) office. Several weeks prior, I had called Senator Lee's office to discuss Obamacare. It took awhile because it was something the PR director wanted to discuss in depth with Senator Lee before she called me back. We spent close to an hour on the phone. It was a spirited debate but I sincerely appreciated her time. I am not a fan of Senator Lee. In fact, I have told people that if I ran into him at, say, an airport, it would be hard for me not to spit in his face. I find him arrogant and an obstructionist. But after the call with his PR director, I've slightly softened my stance. Yes, he wants a full repeal of Obamacare. But he proposes that Obamacare be phased out as a new/better plan is phased in. He recognizes that Obamacare cannot be repealed with nothing to replace it immediately. In my opinion, however, Obamacare is going nowhere and the Republicans should start helping to make it better and helping those who can't seem to navigate it instead of more political posturing. Such is politics.

No comments:

Post a Comment