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Running For More…

The personal blog and website of Kristen Cincotta

Archive for the ‘Research Funding’ Category

Fundraising Lessons Learned from my #Run4Research

Sunday, September 8th, 2013

Early in the year, I decided that in 2013, I would try to raise $1000 for three different cancer organizations in conjunction with my three biggest races of theTime for Research Alarm Clock year. First, I ran for the ROC  at the Publix Georgia Half Marathon back in March and had AMAZING success with that fundraiser, ultimately raising $1513. Coming off of that high, I thought that my second fundraiser, my #Run4Results for the Breast Cancer Research Foundation (BCRF) in conjunction with the Peachtree Road Race 10k would be just as successful. However, that fundraiser just never took off the way I had hoped that it would. In the end, I was only able to raise $205. For my third fundraiser of the year, the #Run4Results, which I launched a week ago and which benefits the American Cancer Society, I wanted to make sure that I do everything I can to recreate the magic of my #Run4ROC rather than repeating my less than successful #Run4Research. To that end, I’m going to take some time here to hash through what I think were the major lessons of the #Run4Research fundraiser that kind of wasn’t.

Lesson 1 – It Takes Time, Time, Time

I launched the #Run4Research on June 17th. The Peachtree Road Race was on July 4th. That means that even though I planned to continue the fundraiser for a few weeks post-race (and, in fact, you can still make a donation here if you’d like!), I really only gave myself three weeks before the race to generate awareness of my fundraiser and pull in donations. Then I went and developed a killer infected tooth that required an emergency root canal about a week before the Peachtree. Honestly, with as much pain as I was in, I was just not in the right mental state to be promoting my fundraiser. At that point, I was hurting so much, I wasn’t even sure how well I was going to run. Ultimately, I promoted my fundraiser for about a week, let it falter for a week and a half, tried to pump it again right before the race, and then kind of gave up when the donations just weren’t there.

So the lessons here? Give myself more time, both before AND after the race. I know from my years with the Breast Cancer 3 Day that people need time to hear about your effort and decide to donate. Sometimes they want to save more to make a bigger donation. Some people like to wait for pay day or the next time they pay bills. Some people just plain forget. Plus, things are going to come up on my end (like that toothache) and I need to be prepared for that. So this time around, I gave myself a full month before the race to raise awareness of my #Run4Results (which is probably still not quite enough) and I’m committing myself to continuing to promote this cause for a full two weeks post-race as well. With the #Run4ROC, I got the majority of my donations in the week after my big race because seeing my tweets and Facebooks posts and Instagrams from the race reminded them to donate. I’m sure if I hadn’t gotten discouraged and basically given up, I could’ve pulled in some more donations immediately after the Peachtree as well. So – more time pre-race to raise awareness and more time post-race to let people make their donations.

Lesson 2 – Just Like Training, Consistency is Key!

I already touched on this, but I was just NOT consistent in promoting my #Run4Research. I would tweet and Facebook about it regularly for a few days, and then completely go silent for days. In this era of social media, you have to say something repeatedly and then say it again if you want it to stick. There are just too many other things vying for people’s attention. If I don’t mention my fundraiser in some capacity on a regular-to-constant basis, people who have every intention of donating will forget. I’m guilty of this as well – I see fundraisers that others are doing and think “I should donate to so-and-so’s fundraiser!” and then completely forget when I don’t see constant reminders. So – consistency, consistency, consistency. Look for lots of posts, tweets, Facebooks, Instagrams, emails, whatever. It’s coming!

Lesson 3 – Move Beyond Social Media

All of my most successful fundraisers have included one key element – I sent out fundraising letters through both email and snail mail. Heck, my parents used to make me write a letter about why their co-workers should buy my Girl Scout cookies before they would take the order form in to work. I have been writing fundraising letters and distributing them in any way I could think of since I was a tiny person. So, what did I NOT make time to do for the #Run4Research? Yeah, I never sent any fundraising letters. No emails and definitely no snail mail. I tried to do everything through social media and it didn’t work. I also didn’t bother to try to plan any other type of fundraiser either. No raffles, no contests, no events. I can’t say that I will have time to plan any big fundraising events for my #Run4Results, but I AM going to get back to what I know works the best for me – those fundraising letters. I just can’t expect everyone to come to my social media sites and make donations. I need to bring my cause to them. If I want my friends and family to go to the extra effort to support me, I need to go the extra mile to ask them directly.

Lesson 4 – Connect the Dots

And by connect the dots, I mean two things: I need to draw the connection between what I’m doing (running until my legs feel like spaghetti) and what I’m asking them to do (donate, donate, DONATE!) and I need to highlight my connection to the organization that I’m fundraising for. Let’s take each of these in pieces, starting with the second one.

When I set out to accomplish my three big races/three big fundraisers plan, I spent a lot of time deciding which organizations I wanted to fundraise for. I knew that I wanted my organizations of choice to be cancer organizations, and I wanted at least one of them to be explicitly a breast cancer organization. I wanted reputable organizations with solid track records of doing good work. I wanted at least one organization to focus primarily on research because I’m a research scientist and I wholeheartedly believe that research is our silver bullet to ending cancer forever. I wanted there to be some structure for running a fundraiser on behalf of each organization to already be in place. And I wanted to stay away from Komen, not because I don’t support them (because I obviously do) but because I’ve focused almost exclusively on them in the past and knowing the growing public fatigue towards Komen, I wanted to use my efforts to spotlight other organizations. So that is how I landed on my three organizations: the ROC (my mom’s oncology center), BCRF (a breast cancer foundation focused primarily on research), and the American Cancer Society (highly effective and diverse organization with a great structure in place for the fundraiser).

For the #Run4ROC, I had to put in a little extra effort to get the fundraiser itself set up since there wasn’t really a model already in place. However, my connection to the organization I was fundraising for was readily apparent. My mom has been getting her treatments at the ROC since 2007 and they have been tremendous to us. Many of my potential donors also had friends and/or family who had been treated there and those that didn’t wanted to extend their gratitude to the staff there for taking such excellent care of my mom. I didn’t have to work very hard to sell people on why donating to their capital campaign was a great thing to do.

For the #Run4Research, though, I over-estimated both the general awareness of BCRF AND the trust that folks had in them. A lot of the big breast cancer organizations have been hit pretty hard in the press lately and they are all feeling the pinch because of it. While I know that BCRF isn’t perfect, they are a VERY good organization. And they do put their money where their mouths are – in 2012, they donated 91 cents of every dollar raised to breast cancer research. In promoting my fundraiser, though, I never really made it clear why I had chosen them. This should have been an easy sell – I was a biomedical research scientist and I’m currently a public health research scientist. If I can’t sell people on the importance of funding research (especially under sequestration when federal funding for research is super tight!), then no one can. And somehow, I failed to make that connection. I can’t expect my potential donors to do the leg work to research an organization they’re not familiar with. I need to be the one to do the leg work and bring the facts to them if I want them to donate, especially since this was my second fundraiser of the year.

And speaking of leg work – I also think I need to draw the connection between my running and my fundraising a little better. With the 3 Day, it was fairly easy to draw that line – if I didn’t reach my fundraising minimum, I didn’t get to walk. I had skin in the game to make my fundraising successful, as it were. With the fundraisers I’m doing this year, that isn’t the case. I was running the Publix Half Marathon whether my #Run4ROC fundraiser was a success or not and I was running the Peachtree regardless of what happened with my #Run4Research. I tried to connect my fundraiser to my running by suggesting amounts for people to donate (like donations per mile or per minute of time), but I’m not sure that worked as well as I’d have liked.

For me, the connection between my running and my fundraising is this: I’m working HARD to prepare for this race. Because of social media and email and all of that, I can draw as much attention to my training efforts as I want (Hey! I ran 12 miles on Saturday!). And in drawing attention to my training efforts (Did I mention it was HOT when I ran 12 miles?!), I hope that I can take that little spotlight I’ve claimed for myself (TWELVE MILES!), and redirect it onto a cause that needs as much of a spotlight as it can get (How about a $12 donation for my twelve miles?). I’m not delusional here – I know that I don’t have the clout (or even Klout) of a celebrity when it comes to drawing attention to a cause or an organization that I care about. But through this blog, my many years volunteering for breast cancer organizations, and my personal experience as a researcher, I think I’ve built a little bit of credibility when it comes to highlighting organizations worth supporting. And, well, I’m really good at being loud. If I can use my loud voice and my legs to draw attention to a cause that matters deeply to me, I’m going to do it. I think I just need to make that more clear in my fundraising efforts!

Translating the Lessons to Action

So given all that, here’s what I’m going to do differently to make my #Run4Results just as successful as my #Run4ROC:

1. Start earlier and stick it out longer. The AllState 13.1 Half Marathon is on October 6th. I’ve already started raising awareness for my #Run4Results and I’m committed to keep it up for at least six weeks – four weeks pre-race and two weeks post-race.

2. Promote my fundraiser and highlight my efforts towards it more consistently. I’ve already been highlighting all of the training that I’m doing to prepare for this race in my weekly training posts. I’m also going to start including a brief fundraising update in each of those posts as well as dedicated fundraising updates every two weeks. I’ve also got at least three posts planned over the next four weeks highlighting the great work of the American Cancer Society. Which brings me to action item #3….

3. Highlight the great work of the American Cancer Society. I chose them for my third fundraiser for a reason. I’m going to use this blog to tell you why.

4. Send out fundraising letters. I’m planning to send out one set in the next week or so and one set in the week immediately following the race. I’m going to send primarily emails but I’m also going to use snail mail to reach some family members who aren’t as comfortable navigating the online world (aka: my grandmother!).

It’s going to take a bit more commitment to make this fundraiser a success than in the past but I’m ready to give it the same time and effort that I’m giving to my training. After all, while all this sweaty running might draw some eyeballs, it’s the donations that will ultimately lead us to a cure (or cures!) for cancer.

ACS Determination Logo 2

Please consider supporting me in my #Run4Results at the AllState 13.1 Half Marathon to benefit the American Cancer Society by making a donation today!

Running for Research with the Breast Cancer Research Foundation!

Monday, June 17th, 2013

Back in March, I ran for the ROC. Peachtree Road Race LogoThis July 4th, it’s time for my next big fundraising race of 2013 – I’ll be Running for Research at the Peachtree Road Race with the Breast Cancer Research Foundation!

For my second big fundraising race of the year, I am choosing to focus my efforts on raising money for breast cancer research. I chose BCRF for this fundraiser because while many breast organizations do great work and raise money for research, BCRF is one of the few to focus on funding research as their primary mission. In fact, this year, BCRF is funding $40 million dollars in breast cancer research, research that will change the future for all of us. As a scientist myself, I know the power of a dollar. Research is very expensive and sometimes the return on investment isn’t great. But when those breakthroughs happen, they are worth EVERY SINGLE PENNY. I firmly believe that the only thing that will end breast cancer as we know it is research. Research on prevention. Research on better diagnostics. Research on better, less devastating treatments. Research on survivorship. Research dollars will make all the difference.

So, let’s work together and raise some of those research dollars today! As I mentioned, I am doing this fundraiser in conjunction with my running of the Peachtree Road Race on the 4th of July, the world’s largest 10k. This will be my fourth year running this iconic Atlanta event, and my first time tying in a charitable component. Just as the race is huge (60,000 runners!), I want my fundraiser to be huge as well. That’s why I’m setting my goal for this race at $1000 by the end of July. Here are a few options for how you can help me get there:

  • Donate the amount of money needed to sponsor research for the time I’ll be running this race. Based on my training and previous races, I’m estimating it will take me about an hour to make my way from Buckhead to Piedmont Park. BCRF estimates that on average, one hour of research costs $50, so that’s a great starting point for a donation. If $50 isn’t right for you, you can sponsor 30 minutes for $25 (the minimum donation required through BCRF’s Time for Research program), two hours for $100, six hours for $300… you get the picture. This is an excellent way to give your donation a tangible value!
  • Donate per kilometer or per mile. The Peachtree is a 10k, which is the equivalent of 6.2 miles. You can donate $2.50 per km for a $25 donation, $5 per mile for a $31 donation, or hey – donate $62 and honor the distance both ways!
  • Donate to dedicate a mile. As with my previous fundraiser, if you donate $100 or more, you can dedicate one of my miles to anyone that you wish to honor. I will recognize them on my personal website (www.runningformore.com) as well as on my shirt on race morning (provided I have your info by July 1st). Because I am reserving the first mile for Marcia, my best friend’s mom, and the final mile for my mom, there are only four miles to claim, so if you want to do this, donate soon!

To support me in my Run4Research, please click on the link below to visit my personal fundraising page on BCRF’s Time for Research website and follow the instructions to make an online donation:

http://www.timeforresearch.org/run4research

It’s really as easy as that! 100% of the funds donated through Time for Research go to the BCRF, who currently spend 91 cents of every dollar on breast cancer research and awareness programs. All donations are tax deductible. Please be aware that Time for Research does not accept mailed in donations at this time.

Please donate whatever amount is right for you. Every donation is step towards an end to breast cancer forever. I know many of you donated to my Run4ROC in March, and I will be asking for donations again this fall when I run the Allstate 13.1 half marathon to benefit the American Cancer Society. I’m asking a lot of all of you this year, just as I’m asking a lot of myself as I sweat it out in the hot Atlanta sun training for each of these races. I appreciate every cent that we are able to raise together for this important cause and for this great organization that often gets overshadowed by some of the better known breast cancer groups.

As I noted with my Run4ROC fundraiser, this fundraiser is different than the fundraisers I’ve done in the past. While I am using the BCRF’s Time for Research structure to host this fundraiser, there are no fundraising minimums required for my race entry and I’m not trying to earn any awards or prizes. I simply want to raise some money for the most powerful weapon we have against breast cancer – RESEARCH. I have seen this power firsthand, both with my own work during my lab days and now with my mom – the chemo drug that she is currently on was only approved by the FDA this spring. Through research, we are literally building the path forward for those living with metastatic breast cancer as they are walking down it. I don’t want anyone to ever come to the end of that road because we didn’t fund critical research when we could have. No one should ever have to hear “I’m sorry, there are no more treatments for you” and yet, for too many women, that is still a reality. The ability to change that is in our hands right now.

Clicking on the image will take you to my fundraising page too!

Thank you for your continued support of me and my fundraising efforts – together, we will end breast cancer forever!

My BIG News – Dr. C Got a Job!

Monday, December 3rd, 2012

So… I sort of fell off the #NHBPM wagon. The goal was to write 30 blogs posts in 30 days. And I promise, I had every intention of doing just that. But yet, it’s now December 3rd and I only wrote/published 3 posts. I feel sort of bad about that. But not too bad, because I had a REALLY good reason for not posting:

I GOT A JOB!!!

It was a very long hiring process, one that honestly stretches back to last December when I applied for a public health policy research position on a team working on Traumatic Brain Injury (TBI) at the Center for Disease Control and Prevention (CDC). As it turns out, I didn’t get that job. But my resume did catch the eye of the team lead, who also serves as the acting branch chief for the Health Systems and Trauma Systems Branch in the Division of Unintentional Injury Prevention (DUIP), which is a part of the larger National Center for Injury Prevention and Control (NCIPC). When the next possible opening on the TBI team came up in May, she got in touch with me and we had a phone interview that went great.

And then I didn’t hear anything more all summer, other than assurances that NCIPC/DUIP were re-organizing and they’d be in touch. In the mean time, I continued applying for other jobs (and hearing nothing… ), researching possible fellowship opportunities, and networking, networking, NETWORKING. Anyone that I came into contact with who had even the most remote connection to a place I wanted to work or experience in the fields I’m interested in, I was all over it. In August, I spent over an hour chatting up a very nice woman who happened to work at the CDC while hanging out at my friend Kristin’s pool. And that conversation was where I learned about ORISE fellowships.

ORISE is an acronym, that stands for Oak Ridge Institute for Science and Education, a Department of Energy (DOE) institute focused on recruiting scientists and engineers to work on a whole host of health, science, and engineering issues. ORISE itself is a physical place located in Oak Ridge, Tennessee that is managed by the Oak Ridge Associated Universities (ORAU) consortium. However, not all ORISE scientists work in Tennessee. Rather, ORAU also sponsors a series of ORISE fellowships at a number of member institutions and partners, including at the CDC here in Atlanta.

So, what does this have to do with my new job? Well, as part of the big reorganization over in the NCIPC/DUIP, a team working on public health policy relating to prescription drug overdose (PDO) was relocated into the Health Systems Branch, which, as I noted above, is currently under the direction of the head of the TBI team that I interviewed with. The PDO team happened to have openings for two ORISE fellows to work on a two year project evaluating a series of state-run prescription drug monitoring programs (PDMPs). And my contact, who was still looking for a way to bring me in, recommended that I apply for the position, which I did.

And then I didn’t hear anything for over a month.

Thinking that the lack of communication meant the fellowship was a long shot at best, I soldiered on, pursuing networking opportunities with a commitment that could best be described as “relentless fervor”. As part of this pursuit, I figured out a way to attend the Network for Public Health Law Conference here in Atlanta in mid-October. The conference was awesome and I learned A LOT. But more importantly, I met A LOT of people who were generous with their time and really went out of their ways to help me build my networks within the public health field. As it turns out, one of the people that I met at the conference just so happened to work on the PDO team at the CDC. And he went back to his team lead and talked me up, effectively moving my resume to the top of the pile.

[Side note: When you are looking for a job, everyone, and I mean EVERYONE, will tell you “It’s all about who you know!“. I was told this three separate times at my dental cleaning in early October alone. Reluctantly, I admit that they’re right. But what people don’t tell you is that you, and you alone, control who you know. So if your current network isn’t generating promising leads, get out there and meet new people!]

Shortly after I got back home from my networking trip to DC (like I said, relentless fervor!), I had a phone interview with the PDO team lead and another senior member of the team. It was on a Friday morning, it lasted 27 minutes, and I had no idea if they liked me or not. After a weekend of trying to convince myself I didn’t blow it while simultaneously preparing for another networking meeting with a public health lawyer at the CDC the following Monday (RELENTLESS FERVOR), I received an email on Monday morning that basically said “Congratulations on being selected as an ORISE fellow! Here’s 800 pieces of paperwork we need to start working on to get your hiring approved and processed.”

I was FLOORED. But I was also cautious. In all of my networking meetings, I had learned that opportunities with the federal government can fall apart just as easily as they come together. So I tried my best not to say anything until everything was finalized (although my mom leaked it to my 94-year-old grandmother who then posted about it on my Facebook wall… ), which happened the Tuesday before Thanksgiving. So while I was stuffing my face with turkey and potatoes and pie, I was also incredibly grateful that after a long, frustrating search, I had FINALLY landed a fantastic position where I will get hands on experience learning how public health policy is set at the federal level.

I’ve now been at work for a little over a week and I’m still really excited, even though all I’ve gotten to do so far is paperwork and background reading. I hadn’t really considered working in drug abuse policy, but I’m finding the material stimulating and intriguing. Prescription drug misuse and abuse is a huge public health problem across the country right now and different states are trying different things to counter it. My job, then, in a nutshell, will be to help figure out which interventions and controls are working (and why) and which aren’t (and why). It should be a fun challenge and I know I’m going to learn a lot!

The one caveat, though, is that as a guest researcher at the CDC, my understanding is that I need to be careful what I choose to blog about here. In terms of “reporting” on the fundraising and awareness events that I try to take part in on a regular basis, I think I’m fine to keep blogging away. Likewise, fundraising for private organizations like American Cancer Society and Komen for the Cure. However, there are obviously confidentiality issues relating to the work I’ll be doing at the CDC, so beyond what I’ve shared in this post, I probably won’t write much about that specifically. Additionally, I need to be careful that any health and science posts (like my “cancer awareness month” series) are not misconstrued as approved by or representing any kind of official position by the CDC, ORISE, ORAU, or the Departments of Energy and Health and Human Services. A simple disclaimer should do the trick, but I’ll probably err on the side of caution for a while just to be safe.

Finally, I strongly suspect (although I haven’t seen it confirmed anywhere yet) that I am not supposed to do any public advocating or politicizing on issues pertaining to government-funded research, including the current state of said funding and the potentially detrimental effects of sequestration on it. It is something of a conflict of interest to be advocating for protecting/increasing CDC funding when said funding levels have huge implications for the future of my fellowship and whether or not I get hired on as a permanent CDC employee. So PLEASE. Since this is the only thing I’ll be writing publicly about sequestration from this point on, do me a favor and look it up. Look up the effects that an 8% across the board cut in funding will have on NIH, NSF, FDA, AHRQ, and yes, CDC. If you do nothing else, read through this report from Research!America. Read the info that AAAS (especially this report), CIBR, and the Society for Neuroscience have compiled on the issue (note, those links will take you to their sequestration pages). This letter by the Coalition for Health Funding is also worth a read, as is this ACS CAN blog post on sequestration and breast cancer research. Read the Cures Not Cuts! website. And CONTACT YOUR REPRESENTATIVES. The US government funds the vast majority of biomedical research in this country, research that will find the cures for Alzheimer’s, Parkinson’s, multiple sclerosis, muscular dystrophy, diabetes, and yes, someday, cancer. These potential cuts to research investments will have ramifications for decades. We’re falling behind already. We cannot afford any more budget cuts to our science and research budgets and everyone needs to make sure their representatives know it. This PDF from Research!America includes sample letters, tweets, and Facebook posts that you can use as inspiration. Do it for me. Call it a “Congratulations on the new job!” present.

So that’s my biggest news. But I do, actually, have other news as well, this time on the volunteering front. The day before I found out that my fellowship was approved and I had a start date in place, I was asked to be on not one, but TWO important committees at the Atlanta affiliate of Susan G. Komen for the Cure, with whom I’ve been volunteering at health fairs and fundraising events since late last winter.

First, I will be serving as the Safety Chair for the Atlanta Race for the Cure which will take place at Atlantic Station in May (registration is now open!). That means that I’m responsible for lining up the medical and ambulance support for the race as well as making sure everyone is where they should be and everything runs smoothly on race day. As I’ve gotten more involved with the local running community here in Atlanta and I’m pretty comfortable with the medical community here as well, it’s kind of a perfect fit! Organizing, race planning, and health care – it’s a perfect fit! I thought I had my first planning meeting for Race for the Cure committee tonight (we meet on the first Monday of each month), but it turns out that doesn’t start until next month. As best as I can, I’ll try to post updates and you can be sure that come spring, I’ll be recruiting as many people as possible to take part in the race!

Second, I will also be serving as a member of the Community Grants Review Board, something I’ve been wanting to do for years. For those who don’t know, 75% of the money that the Komen affiliates raise throughout the year (including through the Race for the Cure) stays with the affiliates and is redistributed throughout the local communities in the form of community support grants. The majority of these grants go to fund breast cancer initiatives and patient support work at local healthcare providers, community support centers (like YMCAs) and cancer support organizations. I’m thrilled that I now have the opportunity to help direct how Komen Atlanta chooses to use their funds. I have grant review training on Thursday and will have until early January to review my assigned grants. Then in late-ish January, I will get together with the rest of the reviewers to decide on which grants to fund for 2013-2014. I’m really looking forward to experiencing this aspect of Komen’s work from the inside and as best I can, I’ll try to keep everyone posted. However, to avoid conflicts of interest and all of that, I will need to keep the specifics of much of this work private as well.

So that’s how the end of 2012 and the beginning of 2013 are shaping up for me. After my defense last December, I thought my whole life would just start moving forward immediately. I fully expected to have a new job in place well before I graduated in May. I never anticipated that I would be unemployed for as long as I was. Moreover, I had no idea how restricted I would be financially because of my lack of a job, which, in turn, restricted the charitable work I was able to do. In short, throughout most of 2012, I felt stuck in the mud when I all I wanted was to be finally moving forward. Well, after almost a full year of fighting to get unstuck, I can proudly say: I AM UNSTUCK. I have a new job that I’m really fired up about where I’m going to learn a lot about public health policy, law, and hopefully communications from inside the federal government. I have two great volunteering gigs where I’m going to have a real influence on how a large breast cancer not-for-profit does their work. I honestly haven’t been this excited for the coming year in such a long time. It’s such a great feeling to finally be on my way!

#NHBPM Post 2: Where Do the Candidates Stand on Health, Science, and Research Issues?

Sunday, November 4th, 2012

Note: This post is a part of WeGo Health‘s National Health Blog Post Month: 30 posts in 30 days challenge. The prompt for Day 2 that I’m responding to is “Find a quote and use it for inspiration”. To see the rest of my #NHBPM posts, please click on the image at the bottom of this post.

“Whenever the people are well-informed, they can be trusted with their own government.” ~ Thomas Jefferson

Unless you live under a rock, you know that this coming Tuesday is Election Day here in the United States. While many people have already early or absentee voted, the bulk of Americans (including me) will be going to the polls to cast our votes for the next President of the United States, for our members of the House of Representatives, and for other elected officials at all levels of government. As a research scientist who has been funded by a federal grant from NIH, the platforms of our candidates on research investments and regulation are incredibly important to me. The US government is far and away the largest investor in science and health research in the country. As both advocates for and beneficiaries of this life changing (and economically stimulating!) research, I think it is important that everyone going to the polls takes a moment to understand where their chosen candidates stand on issues pertaining to science, health, and technology.

To help everyone be as informed voters as possible on the candidates’ positions on these issues, I’ve compiled a series of resources and reviews that I think present the candidates’ policies and positions as fairly as possible. If you feel that I’ve linked to a particularly biased source, please let me know in the comments. While I definitely have my own personal preferences for how this election will turn out, it is not my goal here to sway anyone’s vote towards or against a specific candidate. Rather, I just wanted to point out some solid resources for those looking to better understand the candidates’ positions before voting on Tuesday.

ScienceDebate.org

Science Debate is an initiative that was started a year ahead of the 2008 election by six concerned citizens (two screenwriters, a physicist, a marine biologist, a philosopher, and a science journalist) in order to help bring science and technology issues to the forefront of the political debate. As they note on their website, within weeks of its founding, the Science Debate initiative had been endorsed by more than 38,000 scientists (including me!), engineers, and other concerned Americans, including every major American science organization, dozens of Nobel laureates, elected officials, business leaders, and the presidents of over 100 major American universities.  Their “call to arms”, as it were, states:

“Given the many urgent scientific and technological challenges facing America and the rest of the world, the increasing need for accurate scientific information in political decision making, and the vital role scientific innovation plays in spurring economic growth and competitiveness, we call for public debates in which the US presidential and congressional candidates share their views on the issues of the environment, health, and medicine, and science and technology policy.”

While the movement has yet to persuade the candidates for President to take part in a physical debate on these issues, it has been successful at pushing the candidates to more clearly define their positions on science, technology, and research. Starting last year, the folks at Science Debate began crowd sourcing a collection of important science questions that scientists, engineers, and concerned citizens wanted to hear the candidates answer. Together with their partner organizations (you can find the list of these organizations on their website), Science Debate culled the list to 14 critical questions, which were then presented to President Obama and Governor Romney. A subset of 8 questions were also presented to 33 members of Congress who serve in leadership positions on committees or subcommittees dealing with science issues. The answers from both Obama and Romney can be found here and the list of Congress members who were surveyed along with links to their responses can be found here.

The questions that were asked cover a wide range of topics and include: Innovation and the Economy, Climate Change, Research and the Future, Pandemics and Biosecurity, Education, Energy, Food Safety, Water Safety and Availability, Internet Regulations, Ocean Health, Science in Public Policy, The Future of Our Space Program, Protection of Critical Natural Resources, and Vaccinations and Public Health. The responses from each candidate are presented side by side, making it easy to compare and contrast between their positions on these issues.

For more information, please visit the Science Debate website here. You can also find Science Debate on Facebook here.

AAAS.org and Science Magazine’s Review of the Republican and Democratic Party Platforms on Science

Following the completion of both the Republican and Democratic conventions in September, Science magazine, the primary publication of the American Association for the Advancement of Science (AAAS) and one of the pre-eminent science journals in the world, published this editorial reviewing the platforms of both the Republican and Democratic parties on issues relating to science, technology, and the environment. The article touches on the parties’ overall stance on research funding, as well as their positions on funding for embyronic stem cell research, climate change, the future of our space program, energy policy, immigrant scientists, the role of “politicized” science, and actual budgets for this work proposed by each party. I felt that this piece was both comprehensive and fair in its assessment of each party’s platform. Please note that while this article is free to read, you may need to register with the AAAS website in order to view it.

The same author also wrote this editorial for the ScienceInsider section of the AAAS website on Paul Ryan’s record on science and government following his selection as Mitt Romney’s running mate in August. This analysis focused heavily on the funding allotted for various science agencies and initiatives in the budgets that Congressman Ryan has proposed over the years in his position as the Chairman of the House Budget Committee. To my knowledge, this article does not require registration to view.

You can read more about AAAS on their website, here, and you can find the website for Science magazine here. You can follow AAAS on Twitter, here, while the Twitter feed for Science magazine is here.

Research!America’s Your Candidates – Your Health Initiative

Research!America is the nation’s largest not-for-profit public education and advocacy alliance committed to making research to improve health a higher national priority. Research!America recently completed some polling that showed that (to quote from their website) “while Americans consistently describe medical, health, and scientific research as important, just 8% of people say they are very well informed about their elected officials positions on these issues”. To help address this shortfall and to aggregate presidential and congressional candidates positions in one place for easy access, they launched the Your Candidates – Your Health questionnaire and website in 2006. In a similar vein to ScienceDebate.org, Research!America sent a letter explaining the initiative and a 13 question survey to every candidate for President or Congress who appears on the ballot this November. All of the responses that they’ve received to date have been published on their website unedited, where they are easily searchable by state, zip code, or name.

Questions in the Your Candidates – Your Health survey touch on: the role of health research investments in rising healthcare costs, investment in research and innovation as a job creation strategy, STEM (science, technology, engineering, and math) education, military investments in research, the budgets for science and technology agencies including the CDC, AHRQ, and the FDA, research and technology tax credits, the role of the government in prevention research, federal funding of embyronic stem research, and whether or not candidates have a science advisor.

It should be noted that Governor Romney chose not to answer each question individually, and instead released a statement summarizing his position on many of these issues, which can be found here. President Obama’s responses can be found here. You can find the responses of the candidates for congressional seats by searching here.

Starting in 2006, Research!America has also been collecting and posting the responses of the sitting members of Congress to these types of questions, on their Your Congress – Your Health website. It is worth noting the questions on the survey have changed over the years and some of the responses on the Your Congress – Your Health page are in response to questions that are no longer a part of the survey. For reference, you can find Congressman Ryan’s answers (submitted in June 2007) here. President Obama’s answers from when he was in the Senate (submitted in July 2007) can be found here. Vice President Biden did not respond the survey while he was still serving in the Senate.

You can find more information about Research!America on their website, here. You can follow Research!America on Facebook, here, and on Twitter, here.

CancerVotes.org

In recognition of the fact that cancer will kill more than half a million people in the United States this year alone, CancerVotes was started by the American Cancer Society’s Cancer Advocacy Network (ACS CAN) to help educate both the public and the candidates about the actions that lawmakers should take to make fighting cancer a national priority. As Chris Hansen, the president of ACS CAN, puts it:

“While we have made great progress against cancer, the disease continues to kill 1,500 people a day in this country. Lawmakers have the power to make decisions that directly impact the lives of cancer patients and their families, which is why it is important that the public understands where candidates for every office stand on issues critical to fighting and preventing this disease.”

As part of their work, CancerVotes presented Governor Romney and President Obama with four questions addressing the most pressing issues for cancer patients and their families prior to the first televised presidential debate. The candidates’ answers to these questions were then posted on the CancerVotes website, and can be viewed here under the title “US President Voter Guide”. The four topics covered in this guide are: the role of the government in leading the fight against cancer, cancer prevention, access to care, and protecting citizens from the dangers of tobacco consumption. The answers from each candidate are again presented side by side for easy comparison.

You can find more information on ACS CAN on their website, here. You can also follow ACS CAN on Facebook, here, and on Twitter, here. You can also follow CancerVotes on Twitter here.

I hope that everyone finds these resources informative and helpful as you all make your way to the voting booth on Tuesday. You are all going to vote, right?!

 

Susan G. Komen for the Cure – My Thoughts

Saturday, February 25th, 2012

A disclaimer: These thoughts and opinions are my own. This is a contentious subject for many. I have attempted to include sources for everything that I claim. Please be respectful in the comments!

Introduction

It has now been over three weeks since Susan G. Komen for the Cure first made headlines when it was announced that they would no longer be funding Community Access grants to Planned Parenthood. Over the interceding weeks, there have been a number of developments, including a reversal of that original decision and the subsequent resignation of Karen Handel, Komen’s Vice President of Public Affairs and former GOP candidate for the governor of Georgia. Over time, this story has fallen out of the headlines, with political debates over birth control, Whitney Houston and who knows what else taking center stage. This week, Komen quietly began sending out surveys to their longtime supporters regarding their management of this crisis and how they should move forward from here. I did not receive this survey, although a number of my close friends did. Many of them had a very difficult time completing that survey. They wanted to answer truthfully, but in reality, their feelings on continuing to support Komen going forward were very mixed and unclear. In discussions with those friends and others in the Breast Cancer 3 Day community this week it became obvious to me that while this debate has largely fallen off the radar of the mainstream media, our community of activists, advocates, and fundraisers is still very shaken. Therefore, I wanted to take some time to share my thoughts on this incredibly complex debate and where I stand as far as continuing to support Komen going forward at this time. This post is going to be long and possibly jumbled. I have a lot that I want to say and on many of these points, I remain just as conflicted as everyone else. This is my best attempt to honestly and objectively sort through those conflicted feelings.

A Few Words Regarding Non-Profit Organizations

Because my consideration of the ongoing debate has essentially evolved into my personal evaluation of Susan G. Komen for the Cure as a not for profit public health organization, it has been helpful for me to establish for myself why it is that I chose to support the organizations that I do and the principles that I expect those organizations to follow. This seems to be as good a place as any to start this discussion.

  1. I do not feel that the leaders of a given organization must share my political, religious, or personal beliefs on every single issue in order for us to work together for a cause that we both believe in. This is true of any future employer that I may be privileged to work for and this is true of any not for profit agency that I choose to support. If we are both dedicated to the same cause and share the same principles specifically regarding that cause, then I have no hesitation in working together.
  2. With the magnitude and scope of the challenges facing us today, we cannot expect one organization to do everything by themselves. Even within a cause that sounds focused, like “eradicating breast cancer”, there is still no possible way that one organization can fight that fight on every single front. Organizations have limited resources and must make decisions about how to best allocate those resources towards the mission that they have established for themselves. It is their prerogative to make those decisions how they see fit. It is our prerogative to support those organizations that make the decisions that are the closest to how we would make those same decisions, if we were in a position to do so.
  3. Related to the previous point, I feel that in most instances, it is somewhat unfair to criticize an organization for the work that it chooses not to do. As I said above, all organizations must make choices. If those choices are made in good faith in a way that that organization believes will best allow them to achieve the mission they have established from themselves, it is unfair to be upset at an organization for not doing something we think that they should. There are thousands and thousands of not for profit organizations doing good work towards a plethora of causes. Find the one that is doing the work that you think most needs to be done and put your support behind them rather than wasting time criticizing an organization that is doing alternative good work.

The Issue That Lit the Fire: Should Susan G. Komen for the Cure be Funding Planned Parenthood?

I will state up front that I consider myself to be a very liberal Democrat and that I believe in the work that Planned Parenthood does. I have never had an issue with Susan G. Komen granting money to Planned Parenthood for breast health services and was disappointed to read that they had reversed their position, especially in light of Ambassador Brinker’s strong defense of Komen’s support of Planned Parenthood in her memoir, Promise Me. In many communities, the only option that many women have for any kind of affordable health services is through Planned Parenthood. Many, many women only get breast exams when they go in for their annual exams in order to maintain a prescription for birth control. Because Planned Parenthood is such an important source of birth control and other family planning education for so many women, they end up performing a large number of breast exams as part of their everyday services. Having an organization like Komen supplementing their funding so that they can continue to provide these services is often critical to keeping their doors open in more rural, poor communities.

I was particularly troubled that based on the statements that were released by a number of Komen’s 120 community affiliates (including by both the Atlanta and CNY affiliates), this decision was made by solely by the Susan G. Komen central offices (herein Komen National), with no consultation from the affiliates. The local affiliates of Komen for the Cure are their own corporate entities that are distinct from Komen National. They are only tied together via their affiliate contracts (which, admittedly, I have not personally read). My understanding, though, is that in exchange for the use of the Susan G. Komen name and logo, the affiliates return 25% of the money that they raise locally to Komen National to fund education and research programs (not overhead or corporate salaries, per my local Atlanta affiliate representatives that I talked to). No money actually flows from Komen National to the affiliates. The remaining 75% of the money that is raised by the local affiliates through Race for the Cure and other fundraising events stays within those local communities. It is the affiliates that individually review and choose to reward every single community grant that is awarded by Komen. It really bothered me, then, that Komen National was making this important declaration of how those monies could be allocated without consulting the very people 1, who had actually raised those funds and 2, who best understood what was needed in their individual communities. To me, this represents a strong disconnect between the work being done by the Komen affiliates and the central Komen National offices.

Thankfully, the fallout of this decision on Planned Parenthood appears to be minimal. If anything, they may be stronger now than they were before, having seen an enormous uptick in direct donations following Komen’s decision. Likewise, before I even knew any of this was happening (as I was blissfully hanging out on a cruise ship in the Caribbean at the time), SGK International had also reversed its position, stating that Planned Parenthood’s eligibility to apply for future funding had been restored.

(As a side note, many in the media have claimed that there is some conspiracy in the way Komen’s reversal statement was worded. “Aha! But they haven’t actually committed to funding Planned Parenthood in the future! They only said that Planned Parenthood is eligible to apply again!” I see no such conspiracy in Komen’s statement. Community grants made by Komen affiliates are only approved for one year at a time. To my knowledge, no currently funded grant to Planned Parenthood was defunded. Committing to funding more grants for Planned Parenthood in future years is contrary to their granting model. No organization is guaranteed renewal of their community grants, nor should they be. That goes for Planned Parenthood too.)

Ultimately, this should have been the end of this debate. However, the conflicting reasons that Komen gave for changing their granting policies (which I discuss below) opened the floodgates for much more detailed scrutiny of Komen’s finances and business practices. And that, my friends, is where things get messy and where I get conflicted.

Truthfully, I haven’t invested all of this time into supporting and advocating for Susan G. Komen because of their community outreach work. I think it’s wonderful that are doing that important work, I really do. But I have supported them all of these years because of the education and awareness work that they do and most importantly, for the vast amounts of money that they have raised and invested in breast cancer research. I’m a scientist and I believe in science. Komen is the largest funder of breast cancer research outside of NIH and the federal government. That’s why I support Komen and that’s why I ask others to support them as well on my behalf. Period. While it was troubling, I didn’t initially see how this firestorm over Komen’s community grants criteria should affect my support for their work raising money for breast cancer research. Alas, further research into the motivations behind the Planned Parenthood decision has revealed that those same troubling motivations may be affecting their decisions regarding their greater business practices. And I fear that the scientific research grants that I was so proud to be helping to fund may be hurting as a result.

Susan G. Komen is NOT a Women’s Health Organization – STOP Saying That Is!

Please pardon me this brief interlude, if you will, relating to many of the articles that I’ve read discussing Susan G. Komen’s responsibility to women as a women’s health organization. I want to scream this from the top of every mountain and tattoo it on my forehead: SUSAN G. KOMEN FOR THE CURE IS NOT A WOMEN’S HEALTH ORGANIZATION. Yes, breast cancer affects breasts which happen be a body part found on women. Yes, 1 in 8 women will be touched by breast cancer. But do you know who else has breast tissue that can develop breast cancer? MEN. Trust me, I’ve met them. Per the Komen website, 2190 MEN will get breast cancer this year and more than 400 of them will die from it. That means that one in every five men who are diagnosed with breast cancer will die from the disease. You know why that percentage is so high? Because most men don’t have a clue that they can get breast cancer too, which means that they are often diagnosed at much later stages of the disease. Moreover, many men are so ashamed that they have a “women’s” disease that they won’t even get the proper treatments for it. This is UNACCEPTABLE. Breast cancer is a disease that can strike anyone, any time, any where. As a breast cancer advocacy organization, Susan G. Komen’s responsibility is to promoting the best public health knowledge and treatment available, regardless of whether that knowledge or treatment applies to men or women. Susan G. Komen shouldn’t have continued funding Planned Parenthood because they have an obligation to women. They should have continued funding Planned Parenthood because Planned Parenthood is doing good work. Period.

So Why Did Susan G. Komen Try To Stop Funding Planned Parenthood?

Well, that appears to depend on who you ask and on which sources you read. I don’t think I’ve read a single unbiased report about the real motivations behind Komen’s decision, but I have read pieces that were written from just about every side of this issue imaginable. As best as I can establish, it has been reported that Komen’s decision was based on either:

  1. A legitimate desire on the part of the organization to separate themselves from potentially contentious political issues such as abortion, especially in light of the negative press their ongoing collaboration with Planned Parenthood was generating. As such, a new rule was put in place to help them identify which organizations might be politically “trouble”. This rule established that no organization currently under federal investigation for mismanagement of funds or criminal wrong doing was eligible to receive community or research grants. This is essentially the rationale provided by Susan G. Komen’s own statements and representatives.
  2. A vast right wing conspiracy spearheaded by a GOP nutjob to secretly but explicitly screw over Planned Parenthood in the name of Pro-Lifers everywhere. This is what every liberal media piece seems to want to be true.
  3. A genuine change of community granting principles with the end goal being more direct accountability of the success of those grants. As a result, funds are being redirected from so called “pass through” organizations like Planned Parenthood (who only recommend women for further screening and treatment rather than providing it themselves) and to organizations that directly provide mammography and treatment services to women. Strangely, this is the reasoning that Ambassador Brinker made in her YouTube statement and in her interview with Andrea Mitchell.

To me, my best guess is that the real reason is somewhere hiding in the middle of all that. Were the ongoing grants to Planned Parenthood causing Komen headaches? Yes, definitely. While I haven’t experienced it directly, many of my fellow 3 Day walkers and Race for the Cure runners have been told explicitly by friends and family that they will not donate to an organization that supports Planned Parenthood. Komen also lost a number of corporate sponsors, like Curves Fitness, due to their ongoing support of Planned Parenthood. Moreover, it has been widely reported that many of the members of Komen’s corporate board of directors and major donors are conservatives who believed that abortion should be illegal. It is not a stretch to believe that Komen was looking for a reason to cut ties with Planned Parenthood. Abortion, and by extension, abortion providers like Planned Parenthood are lightening rods for controversy. I think it’s valid that Komen wanted to distance themselves not just from Planned Parenthood but from any organization that is likely to bring unneeded controversy into the cause of breast cancer advocacy, a cause that has plenty of its own controversy already.

Moreover, I do think that Karen Handel played a huge role in magnifying the controversy and coming up with the reasoning that was given for cutting ties with Planned Parenthood. I live in Georgia and am very familiar with Handel’s politics and positions. She and I don’t agree on much, that’s for sure. However, I will give her the extreme benefit of the doubt that she did not take a job at Komen specifically to screw over Planned Parenthood. My guess is that this is an issue that Komen was already debating and because it is a cause that is important to her, Handel jumped on it. I have read reports that she trumped up the relatively moderate baseline level of negative feedback that Komen was getting on this issue and that she personally helped draft a rule that would specifically exclude Planned Parenthood. Unfortunately, the rule that Handel and others came up with doesn’t really hold water, for two reasons:

  1. Susan G. Komen is currently funding $7.5 million dollars of breast cancer research at Penn State. Penn State, like Planned Parenthood, is currently under federal investigation for the mismanagement of the Jerry Sandusky scandal. As such, Penn State should likewise be excluded from receiving Komen grants, even under the newly modified rule that allows funding to Planned Parenthood (I think). That does not appear to be the case.
  2. Susan G. Komen is also still doing business with Bank of America. In fact, Bank of America is one of the largest corporate sponsors of Susan G. Komen. Bank of America also under investigation in a number of local, state, and federal courts for their role in the mortgage crisis, among other things. Which means Komen feels comfortable doing business with organizations that are under investigation when it benefits them but not when it causes harm to their brand?

So, yeah. The new rule appears to have crafted specifically to block funds to Planned Parenthood without a lot of consideration about how else it would applied.

Now, what about the reason Ambassador Brinker has given? Well, to me, that reason seems valid. Komen wants to be able to quantify the true impact of their dollar. It’s easier to do that if you’re directly funding screening, not recommendations. The question is, if that was the real reason for cutting funding to Planned Parenthood, why wasn’t it the only reason given? This is per conjecture on my part, but my guess is this is the reasoning Ambassador Brinker WANTED to give for the funding change all along, but that the rest of the board didn’t feel that it was the best way to structure their message. They should have listened to Nancy, I’m afraid. Instead, it just all goes to emphasize one very important thing about Susan G. Komen: they are no longer making decisions about how to best fight breast cancer based solely on what is best for the fight against breast cancer. Social politics and brand management seems to be growing in importance in the world of Susan G. Komen for the Cure. And that extends to more than just their community grant making policies.

The Work That Komen Chooses Not To Do May Be More Important Than The Work They Choose To Do

Yes, I know I said right at the top that in most instances, we should not criticize an organization for the work they don’t do because all organizations must make decisions about how to best allocate their resources. However, I also qualified that statement by saying that this only applied when “those choices are made in good faith in a way that that organization believes will best allow them to achieve the mission they have established from themselves.” From what I’ve read, I’m not sure that Komen National is making their business decisions in good faith at this time. The changing explanations regarding the Planned Parenthood grants suggests this is the case. I have a few other examples as well that have led me to question Komen’s motivations and I’m going to work through each of them here.

1. Susan G. Komen funding for breast cancer research has fallen to just 15% of their overall budget, down from 29% of their budget as recently as 2008. Meanwhile, more than 18% of their budget covers fundraising and administration.

As I said above, I have chosen to devote my time to Susan G. Komen because they are largest funder of breast cancer research outside of the federal government. And make no mistake, that 15% of their budget accounts for $63 million dollars of research funding this year alone that we otherwise would not have. I also fully acknowledge that Komen National is choosing to fight breast cancer on multiple fronts, with 43% of their annual budget in 2011 going towards education, 12% to screening and 5% to treatment. As such, the funding pie must be cut up into multiple slices. However, it is troubling to me that during a period when the annual revenue that Komen collects has increased from $100 million to close to $420 million, the relative amount allocated to research has gotten chopped in half. Education and screening are important and I will not deny that. But those programs will not find a cure for breast cancer. Only research will do that. And as another writer pointed out (and frustratingly I can’t find the link where I read this), how can an organization continue to brand itself as being “for the cure” when they are devoting less and less resources to the one area that could actually find said cure?

Frankly, these numbers were eye-opening to me as a scientist and a representative of Susan G. Komen. They also pissed me the hell off.

2. The research that Susan G. Komen is funding is only focused on screening technology and treatments, not prevention.

I’ve read this in a number of places (most clearly in this article by Dr. Susan Love) and I both find it troubling and I also don’t care. Truthfully. From what I have read, and this is an area I’m admittedly still actively reading and learning more about, it does appear that when it comes to setting funding priorities, Komen does value work on treatment and screening above prevention and the basic science of cancer. I am not going to get into the pros and cons of each type of research here. I intend to cover it more in much more depth in future blog posts because it’s both fascinating to consider and also really important. But it’s a bit beyond the scope of this already very long post. However, I do want to talk about the alleged motivations that appear to be behind Komen’s funding priorities.

It has been reported that many of Komen’s board members, including Ambassador Brinker herself, also sit on the boards of other pharmaceutical companies, biotechnology companies and the like potentially creating serious conflicts of interest. This is not a unique situation to Komen National (as evidenced by this similar critique of the American Cancer Society), although it does appear to more common here than on other boards. As a result, many in the media have alleged that Komen National chooses to fund screening and treatments because that is the type of research that benefits the other companies that they work for. Prevention, on the other hand, makes no money for anyone since you can’t make money off a disease that no one is getting anymore. (Just ask the people that make polio meds!) Moreover, I have read assertions that Komen chooses not to delve too deeply into the environmental causes of cancer because the large companies that the board members also work for are ardently opposed to stricter environmental restrictions and laws.

I have no idea how true any of these claims are and seeings as I’m not on the Komen Board of Directors myself, I have no way of finding out. These are certainly damning allegations to make of the organization and an incredibly troubling revelation if it is true. However, I think it’s unfair to draw big red Xs on Komen based on what is so far speculation and gossip. For now, though, this something I am also keeping my eyes on especially with regards to the Komen Advocacy Alliance‘s legislative priorities.

An important point, though, before I move on. At no point in this section have I said that the work that Komen is funding should not be funded. We need to be funding research into every aspect of breast cancer that we can think of. Genetic causes, environmental causes, biological causes, screening, diagnoses, predicting prognoses, treatments, ALL OF IT. Susan G. Komen is choosing to focus their efforts and their money primarily on two specific areas of research: screening and treatment. They cannot single-handedly fund all of the research that is needed on this disease and the work they are funding needs to be done. For me, it comes down to a question of if I believe they are funding the MOST valuable work and if not, is there another organization that is that I would prefer to support instead? That’s a question we all need to answer for ourselves and it’s still an open question for me.

3. Susan G. Komen is no longer funding embryonic stem cell research. Or something like that.

This is a topic that is important to me more for what it says about how Komen makes its funding decisions rather than the issue itself. It is also a topic that has been at the center of boatloads of misinformation. Let me try to walk through what has been reported and importantly, by whom.

In July of 2011, LifeNews.com (a Christian conservative pro-life website) reported that by their estimation, in 2010, Susan G. Komen had funded almost $11 million dollars of research that was taking place at institutions where embryonic stem cell (or ESC) research was also taking place. Not that Komen was directly funding the ESC research itself (which it wasn’t and has never funded, per Komen’s own reporting), but that Komen was funding other research at institutions where totally other researchers studying completely different things were using ESCs. In the fallout from the Planned Parenthood debacle, LifeNews.com reported that in addition to this massive “victory” over Planned Parenthood, the “pro-life” forces at Komen had also driven Komen to quietly change their policy on ESC back in November 2011. In particular, they referenced this particular quote from a statement that Komen no longer has on their website (but which I have a copy of and can share if anyone wants it):

Komen supports research on the isolation, derivation, production, and testing of stem cells that are capable of producing all or almost all of the cell types of the developing body and may result in improved understanding of or treatments for breast cancer, but are derived without creating a human embryo or destroying a human embryo.

Moreover, Lifenews.com (and other outlets that then picked up the story like Care2.com) somehow then claimed that Komen was straight up pulling funding from organizations like Johns Hopkins and the University of Kansas Medical Center because ESC research was being done at those organizations. Ultimately, it was being reported that as much as $12 million dollars in funding was being cut. (Or more accurately, “redistributed” to other researchers, I suppose.)

So, that’s troubling. If the most promising research for curing breast cancer happens to involve ESCs, Komen just isn’t going to fund it? Because of social issues? Or even worse, that if the most promising research for curing breast cancer happens to be taking place at an organization where ESC research is also taking place in a completely different lab then Komen’s not going to fund it either?! That’s not acceptable to me and in my estimation demonstrates that Komen is no longer making funding decisions based solely on what is best for their mission of curing breast cancer. This is, to put it bluntly, my ultimate dealbreaker with Komen.

But… that’s not the end of this debate because that doesn’t seem to actually be true. While the above quoted statement DID appear on Komen’s website in November of 2011, it is not their current stated policy, which was clarified in an updated statement that appeared on their website on February 5th. Rather, they stated emphatically that they had not defunded anyone over the use of ESCs, either by themselves directly or by other researchers at their institutions. They also again emphasized that they have never funded ESC research because it just hasn’t been promising for treating breast cancer. To quote the actual statement directly:

Embryonic stem cells are currently considered to have the most potential for use in the regeneration of diseased or injured tissues. Whether embryonic stem cells will have a role or will be of value in the fight against breast cancer has not been clearly determined. To this point, embryonic stem cell research has not shown promise for application in breast cancer. Contrary to circulating online reports, Komen has not “de-funded” any grantee based on human embryonic stem cell research conducted at their institution. Komen will continue to focus its research efforts on the most promising areas of science which have the greatest potential for breast cancer patients.

Moreover, the ScienceInsider (an online magazine by the American Association for the Advancement of Science or AAAS) reported that minimally, no funding had been pulled from the Komen funded researchers at Johns Hopkins, one of the main organizations mentioned in the various LifeNews.com reports.

Granted, the new statement posted on the Komen website does not state that Komen will fund ESC research in the future if it should prove valuable to do so. I hope that going forward, Komen considers grant applications for scientific funding solely based on their scientific merit regardless of social issues. They should operate as an objective disseminater of donated funds, not letting political pressure affect their decisions.  It is what is right for their cause and for the patients who have pinned their hopes on Komen actually finding a cure. Like I said about the percentage of Komen funds going to research each year, I’m going to be keeping my eye on this issue too.

4. Susan G. Komen is spending too much money on Nancy Brinker’s fancy lifestyle/suing smaller organizations/advertising themselves.

All legitimate complaints relating to Komen National’s business practices. Susan G. Komen claims to spend 83 cents of every dollar on “mission programs”, which includes that rather large 43% of the budget allocated for “education”. At least one analysis of this “education” budget reveals that it includes money allocated for things like postage and shipping, printing, salaries and a whole lot of “other” things. That seems like money that could possibly be better spent. Ambassador Brinker is paid A LOT of money as the CEO of the charitable organization that she founded. It should be noted that this seems to be on par with CEO compensation for other major not for profit agencies, per the quotes from the president of Charity Navigator in this interesting article. She also was apparently reimbursed by Komen for some $150,000 in expenses when she was employed by the Bush Administration, including paying for first class flights. Also falling under this category of potentially wasteful business practices is the huge debate last year around the amount of money Komen was spending suing smaller organizations that were infringing on their copyrights (which my friend Jay did a bang up job of summarizing here and here). Again, that money probably could have been better spent.

The reality is that not for profits that operate on the scale of Komen for the Cure are big businesses. For good or for bad, there are people whose livelihoods depend entirely on these organizations succeeding. There are costs associated with running businesses of this scale. Are Komen’s business practices established by what is best for their brand, their board, or their mission? I think each person has to make that decision for themselves. If you don’t think Komen’s business practices are in line with how you would run this business, then it is your right and responsibility  to find an organization to support that is more in line with your beliefs. All of these little things individually don’t bother me personally. I understand the cost of running a business. Hell, I’m trying to get hired by one of these organizations. But all together, in line with the other points we’ve discussed so far? I have serious concerns. I think Komen’s motivations have shifted a bit and that it would behoove them to re-examine their priorities and recent decisions. I am hopeful that this increased scrutiny on Komen will result in what was once a strong and trustworthy organization returning to former glory. I really am.

My Grave Concern and Where I Go From Here

In the end, whether you continue to support Susan G. Komen for the Cure or not, that is your decision. They are a good organization that is continuing to do good work and that cannot be contested. They are continuing to fund important community support programs. They are continuing to fund research into better treatments and improved screening and diagnostics. Komen has done amazing work at educating the public about breast cancer and they continue to do so. I am proud to support anyone who continues to advocate for them via the Race for the Cure, the Breast Cancer 3 Day or any other activity. In fact, after talking to some representatives from the Atlanta Komen Affiliate, I am proud to stand by them in support of their community outreach and education work. Be on the look out for posts about the upcoming Atlanta Race for the Cure soon!

That being said, as outlined in detail above, I am no longer convinced that Susan G. Komen for the Cure at the national level is the breast cancer advocacy organization that best reflects my personal beliefs for how to most effectively (and quickly) eradicate breast cancer once and for all. As such, I am strongly reconsidering if I want to continue advocating on their behalf. I have too many reservations about their business practices and funding decisions to ask others to donate to their organization in my name at this time. I think Komen is about to undergo some major internal renovations. I am hopeful that these changes will be for the better and that I can again stand with Komen in the future.

I am currently researching other breast cancer (and general cancer) organizations and will post again in the future about what I find. It would be unfair to put Komen through this level of scrutiny without doing the same to other breast cancer organizations that I am considering supporting instead. In the end, I may find that Komen is still the organization that is doing the most effective work against breast cancer. They may not be. I owe it to myself and those who have donated to me in the past (and hopefully in the future) to do that research.

Ultimately, my greatest fear is that the growing backlash against Komen is going to translate into millions of dollars that are lost from a cause that can’t afford to lose money or support. The one thing that Komen does better than anyone else is make it easy for regular people to get involved. Whether you want to run a marathon, walk 60 miles, run a 5K or just buy something pink, Komen has a way for you to contribute. If you want to raise $2300 or just $23 dollars, Komen makes fundraising on their behalf easy. Frustratingly, other organizations make it a lot harder, especially if, like me, you feel you can have more of an impact rallying others rather than writing a check. Please, if you have given up on Komen, don’t give up on this fight. Do your research and figure out how you can stay involved through other organizations, even if it’s hard to do. Keep checking back here as I’m planning to highlight other ways to get involved in the fight against breast cancer, just as I have always done. Whatever you do, STAY IN THIS FIGHT. People like my mom need you.

“Cancer doesn’t have a political affiliation, and is purely pro-death. Therefore I will remain steadfastly pro-cure.” ~ Julie Brock

Get Involved!

Tuesday, January 19th, 2010

In honor of today’s National Day of Service, I thought I would remind everyone of some of the many ways that you can get involved in the ongoing fight against breast cancer.  While there are many, many other ways to get involved, this post highlights just a few of the activities that I’ve been a part of that benefit Susan G. Komen for the Cure.

First and foremost, I encourage everyone to consider participating in the Breast Cancer 3 Day.  It is a lot of work to do the fundraising and the training to walk 60 miles, but it is one of the most rewarding experiences that I’ve ever had the opportunity to be a part of.  You can read more about it on the official Breast Cancer 3 Day website.  And if you can’t walk, consider getting involved with the crew.  They are an indispensable part of the 3 Day experience and I strongly encourage people to consider that as an alternative to walking in the 3 Day.  There are 3 Day events in 15 different cities, so even if you can’t join us in Boston, think about walking in your own city.

Also, if you do decide to take on the 3 Day challenge, consider becoming part of our team, Relentless Optimism.  We are always open to new members, regardless of what city you choose to walk in.

Melissa & I at the 2007 3 Day Finish Line (L) and Kelly & I at the end of Day 2 of the 2008 3 Day (R)

 

If you are looking for a less time-intensive commitment but still want to help raise money for Susan G. Komen for the Cure and breast cancer research, you should sign up for the Race for the Cure through your local Komen affiliate.  For those who don’t know, Race for the Cure is a 5K Run/Walk that benefits the local chapters of Komen for the Cure, with the majority of the money that is raised going directly back into your community.  I have walked and/or run in at least five separate Race for the Cure events in three cities and I can promise you, it is well worth the early Saturday morning.  Plus, free t-shirt!

For those that are in Upstate New York, the 2010 Race for the Cure will be held at the State Fairgrounds in Syracuse on Saturday, May 15th.  You can find all of the details about registering for the race and donating to participants at their official website.
Syracuse Race for the Cure 2007 (L) and 2008 (R)

 

 

With Marcia & Tommy at the 2007 Syracuse Race for the Cure

 

For those of you that are in Atlanta, like me, the 2010 Race for the Cure will be held on Saturday, May 8th at Atlantic Station.  All of the details about registering for the Atlanta Race for the Cure and donating to participants can be found at the official website.
Hannah, Anjali & Suzanne at the Atlanta Race for the Cure 2007 (L) and the balloons over Atlanta during the Atlanta Race for the Cure 2008 (R)

 

For everyone else, you can easily locate a Race for the Cure event near you at this website.  I can’t urge you to get involved in this great event enough.  If you don’t think you can handle a 5K, there’s almost always a 1 mile walk option instead!  If my 90 year old grandmother can do it, what’s your excuse? 

 

Mima (second from right) walking in the 2007 Syracuse Race for the Cure

 

If you are more interested in political activism that athletic activities, consider signing up for the Komen Advocacy Alliance.  The Advocacy Alliance is the legislative advocacy arm of Komen for the Cure.  This is a no-cost, no-commitment way to harness the most powerful tools we have for breast cancer advocacy: our voices as citizens.

Finally, I would be remiss if I didn’t mention the easiest way to get involved: DONATE!  You can use the widget at the top, right hand side of my blog to donate to my fundraising efforts for the 2010 Breast Cancer 3 Day.  Or, if you prefer, you can take part in one (or more!) of my fundraising contests which you can read all about on our team blog.

There are so many ways to get involved in the fight against breast cancer.  Try one of them, try all of them.  Just get out there and get involved!