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Running For More…

The personal blog and website of Kristen Cincotta

Posts Tagged ‘Spotlight On’

Spotlight On: Stand Up 2 Cancer

Monday, September 10th, 2012

This past Friday night, September 7th, you couldn’t help but notice that the same thing was playing on all three major television networks as well as countless more cable networks: the Stand Up to Cancer telecast. This telecast was the third such “road block” telecast that SU2C (as it is commonly abbreviated) has put on since it was founded in 2008 (with the previous broadcasts taking place in Sept ’08 and Sept ’10). While the broadcast was airing, and for hours afterwards, Stand Up 2 Cancer and the #IStandUpFor Twitter hashtag were blowing up social media networks. Viewers were shown clips highlighting the research that SU2C has funded in the last four years and some of the patients that they’ve helped. As of Monday afternoon, the telecast had raised over $81 million. So, given that SU2C is at the forefront of everyone’s minds, I thought this would be the perfect time to take a closer look at this revolutionary initiative.

What is Stand Up 2 Cancer?

Contrary to popular belief, SU2C isn’t a charitable organization like, say, LiveStrong or Komen for the Cure. Instead, SU2C is a joint initiative that was founded in 2008 by a group of women who all had connections to the entertainment industry and who had all been personally touched by cancer. Their idea  to start a program focused on accelerating the time it takes for a scientific breakthrough to have a tangible effect on patients was brought to fruition by two organizations: the Entertainment Industry Foundation (or EIF), who took on the project from the start, and the American Association for Cancer Research (or AACR), who oversee the scientific aspects of SU2C. Since 2008, more than $260 million has been pledged to SU2C, funding 33 grants and more than 350 scientists across 85 institutions. Most impressively, because their leadership structure is primarily embedded within other pre-existing organizations, SU2C is able to donate 100% of publicly donated funds directly to cancer research.

The primary goal of Stand Up 2 Cancer is to take advantage of what we know about cancer today and turn it into effective treatments and diagnostics that will benefit cancer patients as soon as possible. Or to explain it more clearly, here’s how a recent  SU2C press release puts it:

SU2C was founded on the belief that we are at a pivotal juncture with the potential for transformative progress in cancer research because of two trends: breakthroughs made in our understanding of the basic science of cancer, and technological advances that enable us to translate them into new treatments.

In order to take optimal advantage of this “pivotal juncture”, SU2C is committed to funding the most promising translational research (that is, work that will take something a scientist figured out at a lab bench and translate it into something of use to the medical community) ongoing today. Moreover, SU2C strongly believes in (as their website puts it) “removing the bureaucratic obstacles” from scientists and clinicians and allowing them to work the way scientists have always worked best: collaboratively, rather than competitively, as dictated by traditional funding models. And the final piece of this puzzle that makes all of this work? The entertainment industry’s ability to unite and rally the general public around a cause that affects all of us. As the telecast on Friday reminded us, 1-in-2 men and 1-in-3 women will be diagnosed with some form of cancer in their lifetimes. Because of that, the founders of SU2C believed that just by providing an easy way to contribute and making it widely known, they could motivate us to give. And I’m excited to say: they were right.

The People Behind SU2C

While SU2C isn’t itself an organization, there are a number of groups of people who ultimately work together to make this venture a success, each of which are worth knowing a little bit about.

  1. Entertainment Industry Foundation: EIF, the primary organization behind SU2C, is a 501(c)3 non-profit that was founded in 1942 in order to unify Hollywood’s charitable giving around worthy causes and to make use of the entertainment industry’s uniquely loud voice to draw attention to deserving causes. EIF currently funds more than 300 charitable groups across the country and has a high three star rating on Charity Navigator. In 2010, EIF reported revenues of more than $128 million dollars and spent approximately 80% of those funds on programs, including oversight of SU2C. You can read more about EIF on their website, here, and you can view their financial statements here (Form 990s) and here (audited financials).
  2. American Association of Cancer Researchers: AACR, the scientific partner of SU2C, is the world’s oldest and largest professional organization dedicated specifically to advancing cancer research. AACR was founded in 1907 and currently has over 33, 000 members including basic, clinical, and translational researchers, health care professionals, cancer survivors and advocates. AACR is also a 501(c)3 non-profit and in 2010, they reported revenues of approximately $52 million dollars. They spent the majority of those funds on grants, fellowships, and scientific/career development awards for their members (~58%) and on hosting meetings and workshops (~ 27%). Remaining funds were spent on producing publications, legislative affairs, advocate support and training, and other scientific initiatives. AACR, like EIF, meets all 20 of the BBB’s Charity Standards for Accountability (I couldn’t find them on Charity Navigator). You can read more about AACR on their website, here.
In addition to the Executive Leadership Council (which includes the founding members of SU2C from the entertainment and business communities) who make all of the final decisions involving SU2C, there are three other lower committees that help to direct the work of SU2C, especially on the scientific front:
  1. The Scientific Advisory Committee: This group of highly accomplished scientists, physicians, and patient advocates dictates the scientific direction of SU2C. This work includes identifying areas of promising research or great need within the cancer research committee, deciding on funding priorities, and overseeing the implementation and review of scientific grants.
  2. The Executive Management Committee:  This committee advises the leadership on whether the things they are doing at the advisement of the Scientific Advisory Committee are working, especially as it pertains to cancer research philanthropy in general. My understanding is that they essentially act as a check on the power of the Scientific Advisory Committee. The EMC includes leaders in clinical and translational cancer research, oncology, and patient advocacy.
  3. The Advocate Advisory Council: Because the ultimate goal of SU2C is to help patients as quickly as possible, they highly value input from cancer patients and their families. This council elects representatives from this community to serve on the Scientific Advisory Committee and to participate in both Research Dream Teams and Innovative Research Grants (both of which are described much more below).

So that’s who makes up SU2C, in addition to all those celebrities that we see on the telecasts asking us to give to this worthy program. But how exactly do these folks come together to actually impact scientific research? Well, that comes down to…

The SU2C Research Funding Model

The SU2C Research Funding Model really comes down to two principles: collaboration between the top minds working on cancer research today and a laser-like focus on translational research to move basic research breakthroughs from the bench to the bedside as quickly as possible. To that end, SU2C funds research in two ways: through large, multi-faceted Dream Teams and through (slightly) more traditional Innovative Research Grants.

SU2C Dream Teams:

The Dream Team model is one that is, to my knowledge, completely unique to SU2C. Dream Teams are formed when the Scientific Advisory Committee (in response to input from the AACR community) identifies a specific area or topic of cancer research that they feel has a high likelihood of producing successful results while fulfilling a critical or high priority need in cancer care. These topics can be focused on a type of cancer (as in the Pancreatic Cancer Dream Team) or on a type of research (such as the Epigenetic Therapy Dream Team). Once a Dream Team topic has been selected by the Scientific Advisory Committee, proposals are solicited for specific projects and the teams that will perform them, again primarily from the AACR community. Because all of the work done by Dream Teams must be inherently translational, teams must include both laboratory and clinical researchers. The proposed work must be appropriate for specific projects performed by both senior investigators and young researchers. Teams are composed of 1-2 team leaders, up to 8 “Dream Team principals” (including the team leads), and at least two patient advocates. Importantly, all of the leaders and principals on a given team must be from different research institutions, ensuring a diversity of intellectual input into each team’s ongoing work. Because each principal represents their own research group, the total number of researchers on any given Dream Team is quite large, ensuring that the amount of work that can be done by each Dream Team in a relatively short amount of time is substantial. Ultimately, the Scientific Advisory Committee determines the most promising project for each selected topic and the Dream Teams are finalized. There is no pre-determined limit for funding levels for each Dream Team. Instead, SU2C provides what they deem “sufficient resources” for the proposed scope of work. Note that indirect costs by institutions participating in Dream Teams is capped at 10% of the total project budget, thus making sure that money donated by the public is truly being used for cancer research.

To date, SU2C has funded seven distinct Dream Teams, which you can read more about by clicking their names below:

In addition, SU2C has announced in March that they have begun the process of establishing a CRI Dream Team (focusing on Cancer Immunology) and, following the successful telethon last Friday, will also be establishing a Pediatric Cancer Dream Team as well. Many of these Dream Teams have been founded through the help of other cancer advocacy non-profit groups like The St. Baldrick’s Foundation. When SU2C says they believe in collaborative research, they truly mean it on all levels, bringing together researchers, patients, and even other cancer organizations to end cancer forever.

SU2C Innovative Research Grants

Unlike the Dream Teams, Innovative Research Grants follow more of a traditional model for research funding. That is, each grant is issued to one research group, rather than a multi-faceted team working in concert. However, where these grants differ from traditional grants is that they are focused specifically on funding the type of “high-risk, high-reward” research that federal granting agencies and commercial life sciences companies in particular shy away from. Proposals for these grants are accepted and reviewed annually by a special multi-disciplenary Innovative Research Grants Committee that is appointed by the Scientific Advisory Committee. Priority is given to projects from young researchers just starting out in their careers, many of whom are the most up to speed with the latest developments within their fields but who are lacking a long record of successful projects, something that often leads traditional funding agencies to reject them. Priority is also given to proposals with the potential to grow into future Dream Teams, which is SU2C’s ultimate hope for these Innovative Research Grants. Each grant is for up to $250,000 per year and can last for up to three years (which is a fairly standard length of time for a grant to last). To date, SU2C has funded 26 Innovative Research Grants. You can the list of grants that have been funded thus far here.

SU2C Fundraising and How You Can Get Involved

While SU2C has some significant corporate partnerships that help to fund some of its work (including Major League Baseball, Mastercard, the Safeway Foundation, Genentech, and GlaxoSmithKline), the majority of the revenue that SU2C raises comes from charitable donations from the general public like you and me. Much of this giving is generated through the program’s three telethons, but donations are accepted year round. If you would like to support SU2C and the important cancer research that they fund, you can make a donation here. Remember – 100% of the money that you donate goes directly to support research that will accelerate the end of cancer!

Disclaimer and important links: I don’t work for SU2C, EIF, or the AACR. I just think SU2C is worthwhile program and wanted to highlight their work. You can read more about SU2C at their website, here. You can also “like” SU2C on Facebook here and follow @SU2C on Twitter here. You can read more about EIF at their website, here. You can find the Charity Navigator review of EIF here and EIF’s BBB Charity Review here. You can read more about AACR at their website, here and on their BBB Charity Review here. Finally, if you missed the 2012 SU2C telecast or just want to watch it again, you can do so on HULU, here

Spotlight on: CURE Childhood Cancer

Friday, September 7th, 2012

Everyone knows that breast cancer awareness gets it’s own month: October. But for many other diseases, and especially for other forms of cancer, they end up sharing awareness months. In fact, according to this calendar of public health observances, September is Leukemia and Lymphoma Awareness Month, Ovarian Cancer Awareness Month, Prostate Cancer Awareness Month, AND Thyroid Cancer Awareness Month. Among other observances. It is my goal to touch upon each of these types of cancer during the course of this month, adding some diversity into my content before the inundation of all things pink in October. But first, I wanted to touch on possibly the most important cancer awareness month observance that’s happening right now: Childhood Cancer Month. And to mark this observance, I thought I would write the first of what will become the first of many “Spotlight On” posts on a local Atlanta organization called CURE Childhood Cancer and their month long fundraising and awareness campaign “Kids Conquer Cancer One Day at a Time“.

About CURE Childhood Cancer

CURE Childhood Cancer was founded right in Atlanta in 1975, at a time when the five-year survival rates from childhood cancers were less than 10%. Seeing that something needed to be done, Emory University’s first pediatric oncologist, Dr. Abdel Ragab organized a group of parents of his patients and CURE Childhood Cancer was born. At the time of their founding, CURE’s goal was simple: to improve the care and quality of life – as well as survival rates – of children with cancer.

Through the work of CURE, and other childhood cancer organizations like them, that five-year survival rate stands at higher than 80% today. However, cancers that disproportionately and/or primarily affect children under the age of 20 (namely leukemia and lymphoma, nervous system cancers including neuroblastomas, gliomas, and medulloblastomas, and a whole host of bone and soft tissue sarcomas) remain the number one cause of death by disease for children (and number two overall after car accidents). A newborn male has a 1-in-300 chance and a newborn female has a 1-in-333 chance of being diagnosed with cancer before they are old enough to buy a drink in a bar. And 20% of those kids won’t live more than five years after their initial diagnosis. There is still much work to be done, and CURE Childhood Cancer remains a major force in this fight.

CURE Childhood Cancer’s Mission Statement: “CURE Childhood Cancer is dedicated to conquering childhood cancer through funding targeted research and through support of patients and their families.”

CURE Childhood Cancer’s Vision: “CURE Childhood Cancer believes that childhood cancer can be cured in our lifetime.”

Wouldn’t that be awesome?

CURE Childhood Cancer and Research

If there is one thing that defines me as a cancer advocate, it is my steadfast belief in the power of research to eradicate cancer once and for all. CURE Childhood Cancer believes that too, and it’s one of the reasons I’m proud to support them. During the 2010-2011 fiscal year, CURE Childhood Cancer raised approximately $2.4 million dollars. In that same time, CURE spent just over $1.2 million (that’s nearly half of what they raised!) on funding research (including both basic and translational research) and on fellowship training. That’s AMAZING.

CURE Childhood Cancer is currently funding work at four institutions: the AFLAC Cancer Center and Blood Disorders Service of the Children’s Hospital of Atlanta, the MD Anderson Cancer Center, St. Jude Children’s Research Hospital, and Emory University (my grad school alma mater!). This funded work covers 13 ongoing research projects that are designed to investigate a range of topics including almost every type of childhood cancer listed above, survivorship (that is, the long term effects of treatment on survivors after they are in remission), and a phase II clinical trial to improve stem cell transplants and decrease viral infections in pediatric cancer patients. While this work is all focused on childhood cancers, the true reality is that many of the advances made in adult cancers originated from work done on these same childhood cancers. Cancer research funding is truly the rising tide that lifts all boats. This work will help us cure not just childhood cancer in our lifetimes, but ALL cancers. You can read more about the individual projects being funded by CURE here.

In addition to the research that CURE is funding, they also fully fund two pediatric oncology fellows at Emory University each year. These fellows are individuals who have completed their medical school training and are currently receiving additional frontline training in how to conduct research in addition to their ongoing medical service. That means that not only is CURE helping to fund the research that these individuals are doing now, but that CURE’s impact will be multiplied as these individuals move forward in their careers. When I was at Emory, I worked alongside several neurology fellows and I can say from experience that they are some of the smartest, most driven people that I had the pleasure to work with. They desire to not just heal people, but to heal people better via better treatments and a deeper understanding of the diseases themselves. I can’t think of a better way for CURE Childhood Cancer to make an impact on childhood cancer survival rates than through their support of these fellows. You can read more about CURE’s current fellows here.

CURE Childhood Cancer Patient Support Programs

Beyond their primary focus on supporting research, CURE also goes above and beyond to support childhood cancer patients as well as their families and caregivers. CURE reaches out to patients and their families shortly after diagnosis and continues to support them throughout each stage of their journey. They offer emergency financial assistance for families in need so that they can focus on healing their families instead of their bills. Through their Open Arms and Brown Bag lunch programs, they provide meals and companionship to inpatient families and their caregivers. And through their Bereavement Care programs, including their annual Bereavement Weekend, they offer support and comfort to those who have lost their children far too young to this ugly disease. The breadth of support that CURE is able to offer in addition to the research they support is outstanding. Ultimately, together with their research funding, CURE spent 86.4% of the money they raised in 2010-2011 on mission programs. That stellar record earned them the Independent Charities Seal of Excellence and a four-star ranking on Charity Navigator. You can read more about CURE’s Patient Support programs here.

CURE Childhood Cancer Fundraisers

In addition to soliciting for donations from the public, CURE has three big fundraisers each year:

1. Lauren’s Run, an annual 5K run/walk that coincides with the CURE Childhood Cancer Annual picnic, which serves as a respite for families affected by Childhood Cancer. The 18th annual Lauren’s Run took place on April 29th, 2012. Stay tuned to this blog for updates on the 2013 run next spring. You can read more about Lauren’s Run here.

2. The Tribute to Quiet Heroes, a yearly luncheon that honors the mothers of children with cancer. The 2012 event, which will take place on September 29th at 11am at the Grand Hyatt Atlanta in Buckhead, will feature an extensive silent auction to raise funds for CURE. Tickets for this event are $150 and can be purchased at www.quietheroes.org. You can read more about the Tribute to Quiet Heroes here and here.

3. Kid’s Conquer Cancer One Day at a Time initiative, which is currently ongoing and which you can read more about below.

About CURE’s Kids Conquer Cancer One Day at a Time

Part of the reason I wanted to write this post at the beginning of Childhood Cancer Awareness Month was to draw attention to this fabulous awareness and fundraising initiative of CURE’s that was designed to give these young cancer patients a voice and a position of action in the larger fight against cancer. Each day for the month of September, CURE is highlighting two or three inspiring kids who have faced childhood cancer. As CURE says in their most recent annual report:

“Some of the featured children, or CURE’s Kids, are in the midst of their fight. Some have conquered the disease. And some have died battling this dreaded disease. Each day in September, we share the stories of two [or sometimes three!] featured children and ask the community to honor these brave warriors with their donations.”

If you follow me on Twitter, you may have noticed that each morning, I’ve been retweeting links that read something to the effect of “CURE Childhood Cancer honors _____” with a link. And if you’ve clicked on those links, you’ve been directed to blog posts highlighting the kids that are currently participating in this inspiring campaign. Today, those kids are Cole Carter, Abby Boone, and Elena and Olivia Tate. Tomorrow there will be new kids featured. And there will continue to be new kids each day throughout the month of September. You can read about all of them on the CURE Childhood Cancer blog. I encourage you to read and share the stories of these brave kids and if you can, please consider making a donation in their honor. Each family that is highlighted over the course of the month is challenged to raise at least $1000 for CURE’s research initiatives. If you can, please consider helping them reach their fundraising goals. And if you can’t swing it financially, please take a minute and help me spread the word about what CURE and these incredible kids and their families are trying to do. I can’t think of a better way to honor Childhood Cancer Awareness Month.

Disclaimer and Important Links: I was not paid by nor do I work for CURE Childhood Cancer. I just think they’re a wonderful organization and I’m proud to support them. To read more about this fine organization and their great work, please visit their website, here. I particularly recommend  CURE’s Annual Reports, the most recent three years of which can be found here. You can find their Facebook page here and you can follow them on Twitter (which I highly recommend) here. As I noted above, you can find their profile on Charity Navigator here. For more detailed information about the fiscal responsibility of CURE, you can find links to their financial records here. To learn more about childhood cancer in general, I highly recommend CURE’s white paper on the topic, which was the primary source for all of the statistics cited in this post.