GRACE :: News/Info

Wondering what the recent GRACE Website shaking and rumbling is all about?

GRACE Under ConstructionOkay, I was just kidding about the shaking and rumbling, but we have been making some significant changes to the GRACE website lately, thanks in part to your generous donations to our Website Rebuild fundraising campaign.
(Please keep ‘em comin’ – there’s a LOT left to do!)

Most of the changes have been “under the hood,” but some have been visible and are hopefully already improving your experience on the site, especially in terms of page loading times.

In order to keep you informed about these updates in a more timely fashion, we’ve created a GRACE Site Ongoing Improvements forum topic where I’ll be making periodic posts to share our progress. Registered members (free) can also discuss the changes there with the GRACE staff.

We’re always interested in your feedback and suggestions for the GRACE site and welcome your participation.

Thanks and Cheers!

 GRACE Webmaster & Podcast Engineer

Is the system of clinical trials fair for patients? Do you believe in it?

I just watched the movie “Dallas Buyers Club”, about the challenges of getting new drugs for HIV/AIRS just as the first effective treatments were being identified in early clinical trials. It portrays the DEA, FDA, and medical establishment as essentially obstructing the process of patients getting access to life-sustaining treatments, and it led me to wonder whether patients and caregivers feel that the system of novel agents being tested in clinical trials is fair or whether the medical establishment today seems to be protecting people from themselves in unwanted ways.  The movie takes its title from a legal workaround that facilitated people buying non-FDA approved drugs from outside sources outside of clinical trials, learning on the fly in a way that seems far more nimble than the sclerotic, formal trial system being practiced by the doctors.

In truth, the movie doesn’t make physicians clearly evil, as they debate the merits of placebo-controlled trials in order to determine whether treatments are safe and effective.  AZT is shown as having potential efficacy but also leading to severe, dangerous side effects in early testing as a single agent at a higher dose than used in later combinations, though I think the overall sense from the movie is that the people pursuing treatments based on collective experience (pre-social media sharing, mind you) were outpacing the pace of progress in the clinical trials system, with its ties to “big pharma” corporations that are suggested as pulling the strings of the puppets in the FDA. 

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A New Era of Growth for GRACE: Welcoming Carlea Bauman as Our First Executive Director!

CB head shot

One of the biggest steps in the development of a nonprofit organization is the transition from being founder-run to bringing in support of an experienced leader in the nonprofit world. On behalf of the GRACE organization, I’m thrilled to welcome Carlea Bauman as our first Executive Director, as she starts officially in early October.

Here is just a brief sketch of her professional history:

Carlea brings over 20 years of experience in nonprofit management and health advocacy. She joins The Global Resource for Advancing Cancer Education as its first executive director and will direct its growth in revenue, outreach and programs.

From 2006 to 2013, she led the patient advocacy group Fight Colorectal Cancer (formerly C3: Colorectal Cancer Coalition) as its first executive director and later, president. In that capacity, she testified before Congress and the Food and Drug Administration, led the organization through a rebranding, grew its revenue from $340,000 to $1.3 million annually, and increased its advocacy participation by over 200 percent.

Prior to working for Fight Colorectal Cancer, she worked as the National Director of Grassroots Advocacy for the American Diabetes Association and as Press Secretary for the groundbreaking Florida “Truth” Campaign, an initiative that resulted in a 10 percent drop in teen smoking within a single year.

Her passion for health advocacy is personal: Within a 14 month period between 1999 and 2000, she lost her mother to complications of Type 1 diabetes and her father to lung cancer and myelodysplastic syndrome.

Carlea’s career initially started in politics working for the late Florida Governor Lawton Chiles and later at the Democratic Congressional Campaign Committee in Washington, DC. She is a graduate of Florida State University and resides in Northern Virginia with her husband and children. Continue reading

Off to ASCO

ASCO 2013_1 I’m heading off to the ASCO Annual Conference in Chicago, IL, now, along with about 30,000 other cancer specialists from around the world. While there, I’ll be chairing an educational session about management options for acquired resistance, chairing the metastatic NSCLC oral session, speaking to the trainees (fellows) just completing their specialization in medical oncology about the highlights in the lung cancer track this year, tweeting updates in real time as new data are presented (@JackWestMD on twitter), hosting a GRACE reception for our faculty and other guest participants in the cancer community, and doing a videotaped round table discussion with Drs. Nate Pennell and Mary Pinder that will cover some of the highlights and be released as podcasts in the coming weeks.

With so much going on, I won’t be checking in the GRACE site that often, so while people should feel free to communicate with each other, offer updates, ask questions, cheer each other on, etc., I would say that the next 5 days is a particularly bad time to be looking for in-depth insights from me or any other faculty member. We’re all in meetings that go from 6 AM to 10 PM most days, then returning home to clinics full of patients who are anxious to continue with their care needs. I’ll check in as I can, but please forgive me and other faculty if we’re less reachable than usual.

How to Find the Latest Info Directly from ASCO 2013

We’re now in full-on pre-ASCO mode, with the conference just under two weeks away (May 31 to June 4th).  Between now and then, I’ll be working on some presentations I’ll be doing while there, as well as planning a round table with GRACE faculty members Nate Pennell (from Cleveland Clinic, Cleveland, OH) and Mary Pinder (from Moffitt Cancer Center in Tampa, FL).  On the morning of Tuesday, June 4th, I’ll be sitting down with them to discuss some of the most interesting and promising work in lung cancer that we’ll have just seen coming out of ASCO 2013.  This will be just preliminary impressions without all of the data or a lot of detail, but we’ll be putting out the video from this presentation as a series of podcasts as early as later that week (around June 7th) and continuing until it’s all available probably over a couple of weeks.  

We’ll then plan to follow with a live webinar on ASCO highlights with a couple of experts presenting the key results in more detail, probably in the first half of July.  Details to come.

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