<?xml version='1.0' encoding='UTF-8'?><?xml-stylesheet href="http://www.blogger.com/styles/atom.css" type="text/css"?><feed xmlns='http://www.w3.org/2005/Atom' xmlns:openSearch='http://a9.com/-/spec/opensearchrss/1.0/' xmlns:georss='http://www.georss.org/georss'><id>tag:blogger.com,1999:blog-2715382590709147295</id><updated>2009-10-22T20:25:15.808-04:00</updated><title type='text'>Children's Cause for Cancer Advocacy</title><subtitle type='html'>Mobilizing to Conquer Childhood Cancer</subtitle><link rel='http://schemas.google.com/g/2005#feed' type='application/atom+xml' href='http://childrenscause.blogspot.com/feeds/posts/default'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default'/><link rel='alternate' type='text/html' href='http://childrenscause.blogspot.com/'/><link rel='hub' href='http://pubsubhubbub.appspot.com/'/><author><name>Craig</name><uri>http://www.blogger.com/profile/00510487325083406846</uri><email>noreply@blogger.com</email></author><generator version='7.00' uri='http://www.blogger.com'>Blogger</generator><openSearch:totalResults>12</openSearch:totalResults><openSearch:startIndex>1</openSearch:startIndex><openSearch:itemsPerPage>25</openSearch:itemsPerPage><entry><id>tag:blogger.com,1999:blog-2715382590709147295.post-2140848261935062004</id><published>2009-08-04T15:59:00.002-04:00</published><updated>2009-08-04T16:00:22.383-04:00</updated><title type='text'>DC Summer Camp</title><content type='html'>The early summer was unusual here in your nation's capital.  A cool and very rainy Spring, which made even the gardens of those with not-very-green thumbs, like me, colorful and vibrant.  June and July were cool dry, lacking the swampiness that is among the lasting memories for the numerous tourists in town for summer vacation.  For the few DC residents who haven't fled to beach or mountains, the joys of cool mornings, warm, dry evenings, fewer cars on the road and easy access to restaurants, lead one to dream...can Congress actually pass health care reform?&lt;br /&gt;&lt;br /&gt;We were woken from this dream, thrown out of our hammocks and brought back to reality when August arrived.  90's and humid, every day.  And...Congress fails to finish work on health care reform bills and leaves for the month-long "district work period."&lt;br /&gt;&lt;br /&gt;Health care is an easy issue to demagogue - remember those "Harry and Louise" ads opposing President Clinton's health care reform efforts (btw - Harry and Louise are back on, in FAVOR of health reform).  And of course, the ranting about "socialized medicine," and "European-style health care."  Polls suggest that many Americans are concerned about the state of the health care system, but all this propaganda is aimed at scaring the public into supporting the status quo.&lt;br /&gt;&lt;br /&gt;I believe that the Administration has done a weak job of communicating with the public, especially those who HAVE decent health insurance, why they should support change.  NBC's Chuck Todd commented about a recent the President's performance at a recent AARP town hall on health care, "Perhaps the biggest thing that stood out to us at President Obama’s AARP town hall yesterday was that the White House appears to be losing the message war on health care. How do we know? Just listen to the questions the AARP callers had. Several of them asked about "rumors,” and they also brought up GOP talking points on "rationing" or the government coming to your house to ask how you want to die (!!!)." (http://firstread.msnbc.msn.com/archive/2009/07/29/2013177.aspx).&lt;br /&gt;&lt;br /&gt;My glumness about the sad state of this effort suddenly turned to hope with an opinion piece by Kathleen Sebilius (Health and Human Services Secretary) in the August 4 Washington Post.  Among her points, she said, "The current health-care system gives insurance companies all the power. They get to pick and choose who gets a policy. They can deny coverage because of a preexisting condition. They can offer coverage only at exorbitant rates -- or offer coverage so thin that it's no coverage at all. Americans are left to worry about whether they'll get laid off and lose their insurance or wake up from surgery with a $10,000 bill because they didn't read the fine print on their policy." (http://www.washingtonpost.com/wp-dyn/content/article/2009/08/03/AR2009080302223.html) You go Kathleen.&lt;br /&gt;&lt;br /&gt;I hope that the President and his team will use August to communicate with Americans about what the real implications are of inaction, how the different proposals in Congress will effect them and that doing nothing is not an option.&lt;br /&gt;&lt;br /&gt;It shouldn't be hard to get our attention.  He's competing with reruns!&lt;br /&gt;-craig&lt;div class="blogger-post-footer"&gt;&lt;img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2715382590709147295-2140848261935062004?l=childrenscause.blogspot.com'/&gt;&lt;/div&gt;</content><link rel='replies' type='application/atom+xml' href='http://childrenscause.blogspot.com/feeds/2140848261935062004/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='https://www.blogger.com/comment.g?blogID=2715382590709147295&amp;postID=2140848261935062004' title='1 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/2140848261935062004'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/2140848261935062004'/><link rel='alternate' type='text/html' href='http://childrenscause.blogspot.com/2009/08/dc-summer-camp.html' title='DC Summer Camp'/><author><name>Craig</name><uri>http://www.blogger.com/profile/00510487325083406846</uri><email>noreply@blogger.com</email><gd:extendedProperty xmlns:gd='http://schemas.google.com/g/2005' name='OpenSocialUserId' value='17030430221670765910'/></author><thr:total xmlns:thr='http://purl.org/syndication/thread/1.0'>1</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2715382590709147295.post-3385031663065304840</id><published>2009-06-26T16:57:00.004-04:00</published><updated>2009-06-26T17:24:15.129-04:00</updated><title type='text'>From my notes with Mickey Mouse</title><content type='html'>I spent the early part of June in lovely Orlando, FL, at the annual meeting of the American Society of Clinical Oncology (ASCO).  This is an enormous conference or 30,000 cancer docs and other healthcare providers, advocates, and pharmaceutical industry people from all over the planet.  This was my fifth time attending this meeting, and it always seems to take a few weeks to recover.&lt;br /&gt;&lt;br /&gt;This year I had the opportunity to be part of a program for advocates, giving us tools and information to be better able to understand the content of scientific sessions and ultimately communicate this information to the communities we represent.  Among the sessions was one called, "The Economics of Cancer care: It's Everyone's Problem."  Among the key messages of the session were that we spend a lot of money delivering health care that doesn't really improve the health of the population.  Why?  The primary reason is that our system is set up to pay physicians and other providers NOT to ensure better health for their patients, not to spend time listening to patients concerns, but to deliver treatments.  &lt;br /&gt;&lt;br /&gt;In childhood cancer, any survivor or family member will tell you that the doctors, nurses, and other professionals that are part of the care team, spend lots of time with the patient.  A lot of this time isn't paid for by insurance companies, so hospitals have to provide it at a loss.  They see the value in time, in listening, in the value of the patient and family voice.  I don't have the data, but I'd make the anecdotal observation that outcomes for kids with cancer are better because of the time spent with the patient, not just the treatments they receive.&lt;br /&gt;&lt;br /&gt;I am frequently told that pediatric oncology is viewed as a model for the delivery of cancer care - 70%+ participation of patients in clinical trials, a multi-disciplinary team approach to delivering care, and ultimately great success in improving survival rates for many childhood cancers, DESPITE the fact that there is almost no pharmaceutical company interest in R&amp;D for childhood cancers.&lt;br /&gt;&lt;br /&gt;So all this good work in pediatric is happening on the cheap.  Think of what we could achieve in improving healthcare and reducing costs if we could fix the payment incentives for all healthcare providers!  Let's hope our President and Congress consider the model for childhood cancer as they assemble health reform plans.&lt;div class="blogger-post-footer"&gt;&lt;img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2715382590709147295-3385031663065304840?l=childrenscause.blogspot.com'/&gt;&lt;/div&gt;</content><link rel='replies' type='application/atom+xml' href='http://childrenscause.blogspot.com/feeds/3385031663065304840/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='https://www.blogger.com/comment.g?blogID=2715382590709147295&amp;postID=3385031663065304840' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/3385031663065304840'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/3385031663065304840'/><link rel='alternate' type='text/html' href='http://childrenscause.blogspot.com/2009/06/from-my-notes-with-mickey-mouse.html' title='From my notes with Mickey Mouse'/><author><name>Craig</name><uri>http://www.blogger.com/profile/00510487325083406846</uri><email>noreply@blogger.com</email><gd:extendedProperty xmlns:gd='http://schemas.google.com/g/2005' name='OpenSocialUserId' value='17030430221670765910'/></author><thr:total xmlns:thr='http://purl.org/syndication/thread/1.0'>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2715382590709147295.post-391054535060666978</id><published>2009-06-09T22:34:00.004-04:00</published><updated>2009-06-09T23:58:36.718-04:00</updated><title type='text'>CCCA Lobby Day 2009</title><content type='html'>&lt;object width="320" height="266" class="BLOG_video_class" id="BLOG_video-817ee781a4723827" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0"&gt;&lt;param name="movie" value="http://www.blogger.com/img/videoplayer.swf?videoUrl=http%3A%2F%2Fvp.video.google.com%2Fvideodownload%3Fversion%3D0%26secureurl%3DqAAAADbdx0ctBZ6r0jjgHMEoxaYRX9z8RTNCqj12QDwmQ_RLJ_Vc1dTN2D8cetlWumiq4ah83JXVUVEmJwkQ6p1AqXf3mgSBRQ18GyTXHQrDpoTtEnIe3hLp_lFGCaojIYBpFFUf5JM7Ms9egeDjVnQXzKq6MMGfTgZl4XGb83hQ2ZRT8kPLP-5nfFRnUKTbexjAYjbkEXqzrNxuBYV_7U0YsRNnz39KRZZaCHWIe7s1yWac%26sigh%3D4sDw929CRViIYdp9uMyWB1Kadmo%26begin%3D0%26len%3D86400000%26docid%3D0&amp;amp;nogvlm=1&amp;amp;thumbnailUrl=http%3A%2F%2Fvideo.google.com%2FThumbnailServer2%3Fapp%3Dblogger%26contentid%3D817ee781a4723827%26offsetms%3D5000%26itag%3Dw320%26sigh%3DGdpu1n9r35wcpsYZTDGCVkerY6I&amp;amp;messagesUrl=video.google.com%2FFlashUiStrings.xlb%3Fframe%3Dflashstrings%26hl%3Den"&gt;&lt;param name="bgcolor" value="#FFFFFF"&gt;&lt;embed width="320" height="266" src="http://www.blogger.com/img/videoplayer.swf?videoUrl=http%3A%2F%2Fvp.video.google.com%2Fvideodownload%3Fversion%3D0%26secureurl%3DqAAAADbdx0ctBZ6r0jjgHMEoxaYRX9z8RTNCqj12QDwmQ_RLJ_Vc1dTN2D8cetlWumiq4ah83JXVUVEmJwkQ6p1AqXf3mgSBRQ18GyTXHQrDpoTtEnIe3hLp_lFGCaojIYBpFFUf5JM7Ms9egeDjVnQXzKq6MMGfTgZl4XGb83hQ2ZRT8kPLP-5nfFRnUKTbexjAYjbkEXqzrNxuBYV_7U0YsRNnz39KRZZaCHWIe7s1yWac%26sigh%3D4sDw929CRViIYdp9uMyWB1Kadmo%26begin%3D0%26len%3D86400000%26docid%3D0&amp;amp;nogvlm=1&amp;amp;thumbnailUrl=http%3A%2F%2Fvideo.google.com%2FThumbnailServer2%3Fapp%3Dblogger%26contentid%3D817ee781a4723827%26offsetms%3D5000%26itag%3Dw320%26sigh%3DGdpu1n9r35wcpsYZTDGCVkerY6I&amp;amp;messagesUrl=video.google.com%2FFlashUiStrings.xlb%3Fframe%3Dflashstrings%26hl%3Den" type="application/x-shockwave-flash"&gt;&lt;/embed&gt;&lt;/object&gt;&lt;br /&gt;&lt;br /&gt;Join these childhood cancer survivors in advocating for HR2109, the Childhood Cancer Survivorship Research and Quality of Life Act of 2009. Visit our &lt;a href="http://www.childrenscause.org/gac"&gt;Grassroots Action Center&lt;/a&gt; to write to your Congressman today!&lt;div class="blogger-post-footer"&gt;&lt;img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2715382590709147295-391054535060666978?l=childrenscause.blogspot.com'/&gt;&lt;/div&gt;</content><link rel='related' href='http://www.childrenscause.org/gac' title='CCCA Lobby Day 2009'/><link rel='enclosure' type='video/mp4' href='http://www.blogger.com/video-play.mp4?contentId=817ee781a4723827&amp;type=video%2Fmp4' length='0'/><link rel='replies' type='application/atom+xml' href='http://childrenscause.blogspot.com/feeds/391054535060666978/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='https://www.blogger.com/comment.g?blogID=2715382590709147295&amp;postID=391054535060666978' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/391054535060666978'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/391054535060666978'/><link rel='alternate' type='text/html' href='http://childrenscause.blogspot.com/2009/06/ccca-lobby-day-2009.html' title='CCCA Lobby Day 2009'/><author><name>Craig</name><uri>http://www.blogger.com/profile/00510487325083406846</uri><email>noreply@blogger.com</email><gd:extendedProperty xmlns:gd='http://schemas.google.com/g/2005' name='OpenSocialUserId' value='17030430221670765910'/></author><thr:total xmlns:thr='http://purl.org/syndication/thread/1.0'>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2715382590709147295.post-1855034885412264776</id><published>2009-05-21T14:24:00.005-04:00</published><updated>2009-05-21T15:30:58.852-04:00</updated><title type='text'>Cookies, cancer and camp</title><content type='html'>I spent the better part of last week in Gold Creek, Montana, about an hour outside of Missoula.  If you've never been to Montana, add it to your bucket list.&lt;br /&gt;&lt;br /&gt;My journey to Montana was as a presenter, on the topic of advocacy, at the Young Adult Survivors Conference (YASC) at Camp Mak A Dream.  There are lots of cancer camps around the US, but Camp Mak A Dream is unique in presenting this program, which is part recreational, part community-building, and part education.&lt;br /&gt;&lt;br /&gt;And when I was first invited, I really didn't want to go.&lt;br /&gt;&lt;br /&gt;I already had too much scheduled for May, this would come right after CCCA's lobby day and fundraiser, and board meeting. And, I thought, "you're too old for camp."&lt;br /&gt;&lt;br /&gt;But, I got the 7:00am plane and went to Missoula, and was reminded that despite a tough economy impacting CCCA, along with most other non-profits, and tons of other work to do, Camp Mak A Dream is what it's all about - &lt;span style="font-weight:bold;"&gt;Making a Difference.&lt;/span&gt;  Had I not gotten on that plane,  CCCA would have missed an opportunity to share our knowledge about advocacy and how young adult survivors can engage in the process, and I would have missed the opportunity to meet 19 extraordinary survivors from the US and Canada, along with colleagues from the cancer community and the dedicated staff at Camp.&lt;br /&gt;&lt;br /&gt;What's really brilliant about the YASC experience, is how over just a few days, through activities as varied as making paper mache masks, archery, yoga, hikes up the butte, discussions of health insurance, late-effects, survivor guilt (I'll add this one to my Jewish guilt - if you don't know what that is, send me a message and I'll explain), and yes, advocacy, 19 individual survivors bond with each other (and the presenters and staff) and are transformed into a powerful community, and the ability to better advocate for themselves, and the tools and motivation to advocate for each other.&lt;br /&gt;&lt;a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_iCxpqMeJ6qc/ShWrzvHGFvI/AAAAAAAAAB8/hWljbZ6jnug/s1600-h/Camp+Mak-A-Cookies+Entry.jpg"&gt;&lt;img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="http://4.bp.blogspot.com/_iCxpqMeJ6qc/ShWrzvHGFvI/AAAAAAAAAB8/hWljbZ6jnug/s200/Camp+Mak-A-Cookies+Entry.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5338361838625494770" /&gt;&lt;/a&gt;&lt;br /&gt;&lt;br /&gt;One of my favorite activities was the cookie-baking contest.  Divided into three teams (all of us!), we were given a basic recipe and went to work.  Each group exhibited fine team work, leadership and the outcome was pretty tasty.  What a great model for how we can collaborate to make positive change in the lives of kids, adolescents and young adults with cancer.&lt;br /&gt;&lt;br /&gt;So, my advice, get to Montana.  They really mean it when they call it big sky country.  And if you can't get there, invite some friends over to bake cookies - chocolate chips can change the world!&lt;div class="blogger-post-footer"&gt;&lt;img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2715382590709147295-1855034885412264776?l=childrenscause.blogspot.com'/&gt;&lt;/div&gt;</content><link rel='replies' type='application/atom+xml' href='http://childrenscause.blogspot.com/feeds/1855034885412264776/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='https://www.blogger.com/comment.g?blogID=2715382590709147295&amp;postID=1855034885412264776' title='2 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/1855034885412264776'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/1855034885412264776'/><link rel='alternate' type='text/html' href='http://childrenscause.blogspot.com/2009/05/cookies-cancer-and-camp.html' title='Cookies, cancer and camp'/><author><name>Craig</name><uri>http://www.blogger.com/profile/00510487325083406846</uri><email>noreply@blogger.com</email><gd:extendedProperty xmlns:gd='http://schemas.google.com/g/2005' name='OpenSocialUserId' value='17030430221670765910'/></author><media:thumbnail xmlns:media='http://search.yahoo.com/mrss/' url='http://4.bp.blogspot.com/_iCxpqMeJ6qc/ShWrzvHGFvI/AAAAAAAAAB8/hWljbZ6jnug/s72-c/Camp+Mak-A-Cookies+Entry.jpg' height='72' width='72'/><thr:total xmlns:thr='http://purl.org/syndication/thread/1.0'>2</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2715382590709147295.post-3147392733746261236</id><published>2009-02-04T04:15:00.004-05:00</published><updated>2009-02-04T05:05:18.279-05:00</updated><title type='text'>T-4 and counting</title><content type='html'>Four days to go until Rise to Action LA.  If you are not familiar with RTA, check out the link I've provided.  This is the 6th regional conference for young adult survivors that CCCA has developed, in partnership with hospitals and cancer patient advocacy organizations, and it looks to be the best yet.  Registration is exceeding goal, and we have a terrific collaboration with hospitals like Children's Hospital LA and City of Hope, and great partners like USC, WeCan Pediatric Brain Tumor Network, LLS, the Ulman Fund for Young Adults with Cancer and Vital Options.  From this response, it's clear to me that survivors and families are hungry for information that empowers them to advocate for their long-term survivorship care, a day that celebrates their survivorship, and builds relationships among survivors and a community interested in making change.&lt;br /&gt;&lt;br /&gt;Looking back, what did it take to get here?  CCCA's effort in LA began almost 2 1/2 years ago when I met Kathy Riley, a passionate parent of a survivor and advocate at a brain tumor conference in LA.  Kathy knew the docs and other staff at CHLA really well and importantly, knew how to get their attention.  I made the first of several presentations about RTA to key staff in pediatric oncology.  CHLA has tremendous clinical and community programs for survivors, so it wasn't surprising that the initial response to my proposal for a collaboration was...tepid.  But Kathy and I didn't give up talking about RTA at to the folks at CHLA.  2+ years later we've developed a strong partnership with CHLA.  Dr. David Freyer, Medical Director of the Hope Survivorship program at CHLA has been extraordinary in his commitment to making RTA LA a reality.&lt;br /&gt;&lt;br /&gt;In my experience, this story isn't unique.  CCCA spends months and months developing relationships that can ultimately build the program.  I've come to understand that, if there's reluctance to work with us, it's likely not driven by suspicion or competition, but simply that all the well meaning clinicians, and non-profit professionals are at their capacity taking care of patients and families, and often there are elements of the RTA program already in their institution or organization.&lt;br /&gt;&lt;br /&gt;Could this be an easier, or at least shorter road?  Well, I do think that there is an increasing recognition of the value of an advocate-driven program, like RTA.  And CCCA is small, so perhaps is reasonable to assume we can't pull it off.  But, awareness of the program is growing and there is recognition of our ability to lead this effort.&lt;br /&gt;&lt;br /&gt;I know that ultimately all of us involved with patient care, pscyhosocial care and advocacy share the goal of ensuring the best outcome for every survivor.  In a world of shrinking resources all of us need to be open to the notion that the total can be greater than the sum of its parts, that sharing is caring (as my partner would say), and that we all need to embrace the value collaboration for a greater good.&lt;br /&gt;&lt;br /&gt;Hopefully Jess Reamy, CCCA's phenomal Program Associate, who is responsible for much of RTA LA, or I will post a short blog or tweet (I'm still struggling with this concept) with updates over the next couple of days.&lt;br /&gt;&lt;br /&gt;You still have time to buy your plane ticket and join us!&lt;br /&gt;&lt;br /&gt;-craig&lt;div class="blogger-post-footer"&gt;&lt;img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2715382590709147295-3147392733746261236?l=childrenscause.blogspot.com'/&gt;&lt;/div&gt;</content><link rel='related' href='http://www.childrenscause.org/news.php?id=201' title='T-4 and counting'/><link rel='replies' type='application/atom+xml' href='http://childrenscause.blogspot.com/feeds/3147392733746261236/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='https://www.blogger.com/comment.g?blogID=2715382590709147295&amp;postID=3147392733746261236' title='1 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/3147392733746261236'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/3147392733746261236'/><link rel='alternate' type='text/html' href='http://childrenscause.blogspot.com/2009/02/t-4-and-counting.html' title='T-4 and counting'/><author><name>Craig</name><uri>http://www.blogger.com/profile/00510487325083406846</uri><email>noreply@blogger.com</email><gd:extendedProperty xmlns:gd='http://schemas.google.com/g/2005' name='OpenSocialUserId' value='17030430221670765910'/></author><thr:total xmlns:thr='http://purl.org/syndication/thread/1.0'>1</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2715382590709147295.post-3941292236250443694</id><published>2008-10-01T10:04:00.009-04:00</published><updated>2008-10-24T12:53:11.615-04:00</updated><title type='text'>Get with the Plan</title><content type='html'>&lt;div&gt;I realize that our nation has a lot on its plate; a financial meltdown, a couple of wars, and numerous other challenges, but as the saying goes, nothing else really matters if you don't have your health.&lt;/div&gt;&lt;div&gt; &lt;/div&gt;&lt;br /&gt;&lt;div&gt;So I turn to the proposals around cancer from the Democratic and Republican candidates for president.  I think context is important, so I provide the following data:&lt;br /&gt;- cancer is the #1 cause of death in the US, surpassing heart disease.&lt;br /&gt;- cancer is the #1 cause of death by disease in children, and has been for a long time.&lt;br /&gt;- people diagnosed as children, adolescents or young adults account for 10% of the 10 million cancer survivors.&lt;br /&gt;- even with the high rates of survival for some childhood cancers, these survivors pay a high price - 2/3 of them will be affected by a "late-effect" of their disease or treatment, such as toxicity to the heart or lungs from chemotherapy, impact on IQ or memory function from cranial radiation, and increased risk of being diagnosed with a second cancer.&lt;br /&gt;&lt;/div&gt;&lt;div&gt; &lt;/div&gt;&lt;br /&gt;Here are links from the candidates on how they would address cancer care as President.&lt;br /&gt;&lt;div&gt;McCain - &lt;a href="http://www.johnmccain.com/Issues/HealthCare/FC.htm"&gt;http://www.johnmccain.com/Issues/HealthCare/FC.htm&lt;/a&gt;&lt;/div&gt;&lt;div&gt; &lt;/div&gt;&lt;br /&gt;&lt;div&gt;Obama - &lt;a href="http://obama.3cdn.net/f8a8d6b8b4b370d888_24lmvygeu.pdf"&gt;http://obama.3cdn.net/f8a8d6b8b4b370d888_24lmvygeu.pdf&lt;/a&gt;&lt;br /&gt;&lt;br /&gt;My analysis is that both plans need improvement to assure they meet the needs of all cancer patients, survivors and caregivers.  Both plans are broad, and that is to be expected, but I hoped to see some mention of the unique needs of young people, who have different cancers than older adults, biological differences, and different life experience at their time of diagnosis and treatment.&lt;br /&gt;&lt;br /&gt;Where is the discussion of the needs of children and adolescents?  How will we address the need to more rapidly develop new therapies for pediatric cancers, which are typically rare diseases and receive limited attention from drug companies?  The model of taking drugs developed for adult cancers, modifying doses and testing them on pediatric cancers is no longer yielding significant increases in survival.  Where is the imperative to identify new models to develop targeted therapies, which are the future of cancer treatment?&lt;br /&gt;&lt;br /&gt;How will we address the needs of young adult survivors who will, in many cases, live decades beyond their initial diagnosis and treatment?  What are the medical interventions, along with recognition of the psycho-social, financial and educational needs to keep these survivors healthy and productive in our society?  And importantly, how can we help families who care for these survivors, advocating for their care and long-term needs, many years after diagnosis?&lt;br /&gt;&lt;br /&gt;Seniors vote, and therefore have significant clout.  And certainly, as the majority of cancer patients and survivors, seniors should get a lot of attention from policy-makers.  But if young people are our future, I don't think it is too much to expect our next President to consider the needs of children, adolescents and young adults with cancer.&lt;br /&gt;&lt;br /&gt;I had hoped for greater emphasis on children with cancer in the candidates' proposals.  The lack of focus should be signal to childhood cancer patients, families, and advocates.  We need to work hard to raise awareness of children with cancer and demand a commitment to enact policies to address the needs of this population, whomever is the next resident of the White House.&lt;br /&gt;&lt;br /&gt;&lt;br /&gt;&lt;/div&gt;&lt;div class="blogger-post-footer"&gt;&lt;img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2715382590709147295-3941292236250443694?l=childrenscause.blogspot.com'/&gt;&lt;/div&gt;</content><link rel='replies' type='application/atom+xml' href='http://childrenscause.blogspot.com/feeds/3941292236250443694/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='https://www.blogger.com/comment.g?blogID=2715382590709147295&amp;postID=3941292236250443694' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/3941292236250443694'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/3941292236250443694'/><link rel='alternate' type='text/html' href='http://childrenscause.blogspot.com/2008/10/get-with-plan.html' title='Get with the Plan'/><author><name>Craig</name><uri>http://www.blogger.com/profile/00510487325083406846</uri><email>noreply@blogger.com</email><gd:extendedProperty xmlns:gd='http://schemas.google.com/g/2005' name='OpenSocialUserId' value='17030430221670765910'/></author><thr:total xmlns:thr='http://purl.org/syndication/thread/1.0'>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2715382590709147295.post-6083487539221204958</id><published>2008-07-29T15:06:00.014-04:00</published><updated>2008-07-30T16:20:09.551-04:00</updated><title type='text'>Rainy days, Mondays, and redefining quality cancer care</title><content type='html'>&lt;a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_iCxpqMeJ6qc/SJDMkYN623I/AAAAAAAAAA4/LKCHMnJo9J4/s1600-h/DSC_0091.jpg"&gt;&lt;img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer;" src="http://2.bp.blogspot.com/_iCxpqMeJ6qc/SJDMkYN623I/AAAAAAAAAA4/LKCHMnJo9J4/s200/DSC_0091.jpg" alt="" id="BLOGGER_PHOTO_ID_5228904092725336946" border="0" /&gt;&lt;/a&gt;&lt;br /&gt;&lt;br /&gt;&lt;span style="font-family:arial;"&gt;Warning, I need to rant.  You can move onto some other activity than reading my blog if you choose.    I have generally resisted ranting, but yesterday, Monday, calls for it.   Just a musical setting for my  rant; "Monday, Monday," the 1966 hit from the Mommas and the Papas.&lt;/span&gt;  &lt;span style="font-style: italic;font-family:arial;" &gt; Monday Monday, can't trust that day,&lt;/span&gt; &lt;span style=";font-family:arial;font-size:100%;"  &gt;&lt;span style="font-style: italic;"&gt; Monday Monday, sometimes it just turns out that way&lt;/span&gt; &lt;span style="font-style: italic;"&gt; Oh Monday morning, you gave me no warning of what was to be&lt;/span&gt; &lt;span style="font-style: italic;"&gt; Oh Monday Monday, how could you leave and not take me.&lt;/span&gt;&lt;/span&gt;&lt;br /&gt;&lt;span style=";font-family:arial;font-size:100%;"  &gt;&lt;span style="font-style: italic;"&gt;&lt;br /&gt;&lt;/span&gt;Another, early 70's take on Mondays from the Carpenters...&lt;/span&gt;&lt;span style="font-style: italic;font-family:arial;font-size:100%;"  &gt;&lt;br /&gt;&lt;/span&gt;&lt;pre  style="font-family:arial;"&gt;&lt;span style="font-size:100%;"&gt;&lt;span style=";font-family:arial;font-size:100%;"  &gt;&lt;span style="font-style: italic;"&gt;Talkin' to myself and feelin' old&lt;/span&gt; &lt;span style="font-style: italic;"&gt;Sometimes I'd like to quit&lt;/span&gt; &lt;span style="font-style: italic;"&gt;Nothing ever seems to fit&lt;/span&gt; &lt;span style="font-style: italic;"&gt;&lt;br /&gt;Hangin' around&lt;/span&gt; &lt;span style="font-style: italic;"&gt;Nothing to do but frown&lt;/span&gt; &lt;span style="font-style: italic;"&gt;Rainy Days and Mondays always get me down.&lt;/span&gt;  &lt;span style="font-style: italic;"&gt;&lt;br /&gt;What I've got they used to call the blues&lt;/span&gt; &lt;span style="font-style: italic;"&gt;Nothin' is really wrong&lt;/span&gt; &lt;span style="font-style: italic;"&gt;&lt;br /&gt;Feelin' like I don't belong&lt;/span&gt; &lt;span style="font-style: italic;"&gt;Walkin' around&lt;/span&gt; &lt;span style="font-style: italic;"&gt;Some kind of lonely clown&lt;/span&gt; &lt;span style="font-style: italic;"&gt;&lt;br /&gt;Rainy Days and Mondays always get me down.&lt;/span&gt;&lt;/span&gt;&lt;br /&gt;&lt;br /&gt;I won't attempt to provide a deep interpretation of either song, but hearing these songs always&lt;br /&gt;made me a bit melancholy, a bit helpless and anxious for the end of the day.&lt;br /&gt;&lt;/span&gt;&lt;/pre&gt;&lt;span style="font-family:arial;"&gt;This past Monday, I received three calls from family members of three young people with cancer, from three different locations around the country.  The reason for their calls was the same; a child in the family had cancer, and while they had found the specialized pediatric oncology care to treat their &lt;/span&gt;&lt;span style="font-family:arial;"&gt;child, the ripple effect on the family has resulted in financial crisis.  "I can't pay my rent because I have to take my child to the hospital and lost my job. I have two other kids.  Can you help?"&lt;br /&gt;&lt;br /&gt;That was just one family's story, but the other families had similar challenges.  I had little help to offer.  There are few organizations that provide direct financial assistance, they are likely to be in the local community and often it requires a lot of digging to identify them.  I dug, and dug some more, with minimal success.  I felt like I had failed these families, perhaps their communities had failed them, certainly the health care and family services systems had failed them.&lt;br /&gt;&lt;/span&gt;&lt;a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_iCxpqMeJ6qc/SJDKOFxofdI/AAAAAAAAAAw/qPgMyk0DDzQ/s1600-h/DSC_0247.jpg"&gt;&lt;img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer;" src="http://3.bp.blogspot.com/_iCxpqMeJ6qc/SJDKOFxofdI/AAAAAAAAAAw/qPgMyk0DDzQ/s200/DSC_0247.jpg" alt="" id="BLOGGER_PHOTO_ID_5228901510794477010" border="0" /&gt;&lt;/a&gt;&lt;br /&gt;&lt;span style="font-family:arial;"&gt;The Children's Cause typically receives two or three calls in a MONTH seeking financial assistance, this was three calls in a DAY!  I realize that this isn't a statistically significant sample, but I've heard similar stories from my colleagues in the cancer community.  Whether these family crises are brought about by the current economic downturn or the necessity in many families for both parents to work, which becomes unsustainable if one parent must reduce their hours or leave their job in order to take care of a child with cancer, I have trouble understanding how it is acceptable for our society to not provide support for children with cancer and their families through the extended impact of the disease.&lt;br /&gt;&lt;br /&gt;There are approximately 12,500 new diagnoses of childhood cancer in the US each year.  Thankfully, a rare number, and through research investments, many childhood cancers have high rates of survival.  But, as the calls I received well illustrate, eliminating the disease is only one piece of the picture.  Be it the late effects of toxic treatments, post-traumatic that can impact patients and family members for years after treatment, or the financial hardship that a family may face as a result of their effort to ensure that their child receives quality cancer care, it's a fallacy to believe that providing funds for research and treatment is where our societal obligation to these children ends.&lt;br /&gt;&lt;br /&gt;Our debate about health reform in the next administration, regardless of which candidate or party you support, should reflect the fact that cancer is a chronic disease that impacts patients and families.  If you don't believe that as a society we have a moral obligation to provide resources to ensure the long-term wellness childhood cancer patients, then look at it in parallel to the debate of recent years about education in the US.  If it is in the economic best interest of our nation and our society's obligation to have an educated population, and that all children should receive a quality education, regardless of their socio-economic status or other individual challenges, why is it OK to allow to a family to declare bankruptcy in the pursuit of saving their child's life?  Why is it OK to deny access to follow-up care for a survivor, limiting their potential and contributions to the greater community?&lt;br /&gt;&lt;br /&gt;The odds are better for kids with cancer and their families fight to beat the disease, in large part because of our collective commitment through our government, to fund research.  Why aren't we willing to help pay the rent?&lt;br /&gt;&lt;br /&gt;Be well.  I hope your coming Monday is a good one.&lt;br /&gt;&lt;/span&gt;&lt;span style="font-style: italic;font-family:arial;" &gt;&lt;/span&gt;&lt;div class="blogger-post-footer"&gt;&lt;img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2715382590709147295-6083487539221204958?l=childrenscause.blogspot.com'/&gt;&lt;/div&gt;</content><link rel='replies' type='application/atom+xml' href='http://childrenscause.blogspot.com/feeds/6083487539221204958/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='https://www.blogger.com/comment.g?blogID=2715382590709147295&amp;postID=6083487539221204958' title='2 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/6083487539221204958'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/6083487539221204958'/><link rel='alternate' type='text/html' href='http://childrenscause.blogspot.com/2008/07/rainy-days-mondays-and-redefining.html' title='Rainy days, Mondays, and redefining quality cancer care'/><author><name>Craig</name><uri>http://www.blogger.com/profile/00510487325083406846</uri><email>noreply@blogger.com</email><gd:extendedProperty xmlns:gd='http://schemas.google.com/g/2005' name='OpenSocialUserId' value='17030430221670765910'/></author><media:thumbnail xmlns:media='http://search.yahoo.com/mrss/' url='http://2.bp.blogspot.com/_iCxpqMeJ6qc/SJDMkYN623I/AAAAAAAAAA4/LKCHMnJo9J4/s72-c/DSC_0091.jpg' height='72' width='72'/><thr:total xmlns:thr='http://purl.org/syndication/thread/1.0'>2</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2715382590709147295.post-2737798004879258062</id><published>2008-06-27T16:15:00.002-04:00</published><updated>2008-06-27T17:28:49.863-04:00</updated><title type='text'>June  is Science, Schmoozing, and Agoraphobia</title><content type='html'>If you're a fan of musicals (stop groaning), you probably know the song, "June is bustin' out all over" from Carousel.  The lyrics talk of how, "you can feel it in your heart, you can see it in the ground," and buds, saplings and romping rivers.  Makes you want to run barefoot through the meadow, or in my case, through the small, weed-filled park where I take my dog.&lt;br /&gt;&lt;br /&gt;June is nearly over and I can't say that I've seen much of buds, saplings, and romping rivers, unless you count my visit to the Buckingham fountain in Chicago.  I was at the annual meeting of ASCO, that's the American Society of Clinical Oncology, BIO, followed by the Biotechnology Industry Organization in San Diego, and most recently, and most recently, a meeting of the IOM, Institute of Medicine, titled, "Drug Development for Rare and Neglected Diseases and Individualized Therapies."&lt;br /&gt;&lt;br /&gt;There were common features of all these gatherings.  I attended interesting, if occasionally incomprehensible, presentations on advances in medical research, science and technology  that hold the promise of getting new therapies to cancer patients, saving more lives and leaving survivors with fewer long-term effects.  Lots of networking, networking, networking - aka, schmoozing; patient advocates and docs and researchers and drug company folks using these gatherings to share information, meet, and promote their cause.  The exhibit halls at ASCO and BIO are like adult carnivals, complete with frozen yogurt and espresso.  But heck,  the vast majority of people in the cancer world, docs, nurses, social workers, advocates, and yes, those evil drug people, have the best intentions to improve the lives of people with cancer, and work very hard to make that happen.  So who am I to question a crab cake hors d'oeuvre and a glass of pinot grigio.  Finally, there are the crowds.  ASCO has 35,000+ cancer docs from around the world!  These meetings were a test for those, like me, who feel even mild anxiety from the crush of people, the occasional  spilling of drinks, and rush for the carving station.&lt;br /&gt;&lt;br /&gt;I came away from this month of meetings exhausted, inspired by a small number new drugs for rare cancers  under development, and the potential, with advances in research technology to get studies done and new therapies for rare cancers brought to market more quickly.  And I was sobered by presentations of research reporting the significant medical challenges that many long-term childhood cancer survivors face.&lt;br /&gt;&lt;br /&gt;I couldn't finish without recognizing, with great sadness, the loss of two extraordinary advocates.  Patty Delaney, associate director of the FDA's Cancer Liaison Program, died of ALL on June 2.  Patty was one of my first mentors in patient advocacy.  She was a great teacher, passionate advocate, articulate and had great style and knew good food.&lt;br /&gt;&lt;br /&gt;Allan Goldberg was a childhood cancer survivor and went on to become Executive Director of First Descents, a group that sponsors kayaking and outdoor experiences for young adults with cancer.  I didn't know him well, but his positive perspective and persistence in achieving personal and professional goals is model to all of us.&lt;br /&gt;&lt;br /&gt;So, while I didn't see much natural light during the longer days of June, and it's hard not to be a melancholy at the loss of Patty and Allan, I do feel renewed to forge ahead, with the inspiration of all that Patty and Allan did for their fellow survivors, the possibility of saving more lives and and the partnership of my fellow cancer advocates.&lt;div class="blogger-post-footer"&gt;&lt;img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2715382590709147295-2737798004879258062?l=childrenscause.blogspot.com'/&gt;&lt;/div&gt;</content><link rel='replies' type='application/atom+xml' href='http://childrenscause.blogspot.com/feeds/2737798004879258062/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='https://www.blogger.com/comment.g?blogID=2715382590709147295&amp;postID=2737798004879258062' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/2737798004879258062'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/2737798004879258062'/><link rel='alternate' type='text/html' href='http://childrenscause.blogspot.com/2008/06/june-is-science-schmoozing-and.html' title='June  is Science, Schmoozing, and Agoraphobia'/><author><name>Craig</name><uri>http://www.blogger.com/profile/00510487325083406846</uri><email>noreply@blogger.com</email><gd:extendedProperty xmlns:gd='http://schemas.google.com/g/2005' name='OpenSocialUserId' value='17030430221670765910'/></author><thr:total xmlns:thr='http://purl.org/syndication/thread/1.0'>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2715382590709147295.post-2923741681643660822</id><published>2008-05-23T11:25:00.004-04:00</published><updated>2008-05-27T16:01:56.834-04:00</updated><title type='text'>Note to self: politics and cancer are personal</title><content type='html'>&lt;a href="http://1.bp.blogspot.com/_iCxpqMeJ6qc/SDxor2oH9AI/AAAAAAAAAAo/6Y8JnkOz7Is/s1600-h/kennedy.jpg"&gt;&lt;img id="BLOGGER_PHOTO_ID_5205150371940922370" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; CURSOR: hand" alt="" src="http://1.bp.blogspot.com/_iCxpqMeJ6qc/SDxor2oH9AI/AAAAAAAAAAo/6Y8JnkOz7Is/s200/kennedy.jpg" border="0" /&gt;&lt;/a&gt;&lt;br /&gt;&lt;div&gt;&lt;a href="http://4.bp.blogspot.com/_iCxpqMeJ6qc/SDxoHmoH8_I/AAAAAAAAAAg/xuN92C2oYxY/s1600-h/kennedy.jpg"&gt;&lt;/a&gt;&lt;br /&gt;&lt;br /&gt;&lt;div&gt;Admission - I'm a brain tumor survivor, a cancer patient advocate, and I go to a lot of meetings. I feel passionate about my work and sometimes take a strange pride when a meeting, particularly one that I lead, is successful. Saying, "boy, that was a good meeting!" is a surrogate for "we had a robust (one of my favorite words) policy discussion which might (after numerous additional meetings) result in additional research dollars for the National Institutes of Health,"&lt;br /&gt;or "we brought together hospitals and organizations to discuss a program for young adult survivors and just getting them in the same room at the same time is really great."&lt;br /&gt;&lt;br /&gt;I realize that this is how the world works, particularly the non-profit world.&lt;br /&gt;&lt;br /&gt;Then Senator Edward Kennedy was diagnosed with a brain tumor days after he led a Senate hearing about new cancer legislation he is proposing. It was a pretty good meeting.&lt;br /&gt;&lt;br /&gt;Senator Kennedy's diagnosis reminded me of how fortunate I am to have survived 14 years, and knowing the variety of painful treatments ahead for the Senator, great sympathy for the him and his family. Suddenly, I saw him less as a champion of quality health care in the US and more as a fellow brain tumor survivor.&lt;br /&gt;&lt;br /&gt;Senator Kennedy's illness has brought significant media attention to brain tumors. The New York Times had an article today, "Hints of Progress in Drugs Treating Brain Cancer." The article discusses two new brain tumor treatments. One doubles brain tumor survival from 15 months to 30 months. The other adds 2-3 months to a patient's life. Among childhood cancers, which, like brain tumors are considered a group of rare diseases, only one new drug has been developed in 15 years. Sorry, that's just not good enough.&lt;br /&gt;&lt;br /&gt;I know that it takes time, years, to develop new cancer therapies. And rare cancers including brain tumors are at a disadvantage because of limited investment from pharmaceutical companies. But more meetings, even when we "do good meeting," isn't enough. Senator Kennedy's cancer diagnosis and every time we interact with a person dealing with cancer, or the challenges of being a survivor, is a reminder. We must bring the urgency of the needs that cancer patients are facing TODAY.&lt;br /&gt;&lt;br /&gt;Let's keep Senator Kennedy and every cancer patient in our thoughts and remember them when we walk into the conference room for the next meeting.&lt;br /&gt;&lt;br /&gt;-craig&lt;/div&gt;&lt;/div&gt;&lt;div class="blogger-post-footer"&gt;&lt;img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2715382590709147295-2923741681643660822?l=childrenscause.blogspot.com'/&gt;&lt;/div&gt;</content><link rel='replies' type='application/atom+xml' href='http://childrenscause.blogspot.com/feeds/2923741681643660822/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='https://www.blogger.com/comment.g?blogID=2715382590709147295&amp;postID=2923741681643660822' title='1 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/2923741681643660822'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/2923741681643660822'/><link rel='alternate' type='text/html' href='http://childrenscause.blogspot.com/2008/05/note-to-self-politics-and-cancer-are.html' title='Note to self: politics and cancer are personal'/><author><name>Craig</name><uri>http://www.blogger.com/profile/00510487325083406846</uri><email>noreply@blogger.com</email><gd:extendedProperty xmlns:gd='http://schemas.google.com/g/2005' name='OpenSocialUserId' value='17030430221670765910'/></author><media:thumbnail xmlns:media='http://search.yahoo.com/mrss/' url='http://1.bp.blogspot.com/_iCxpqMeJ6qc/SDxor2oH9AI/AAAAAAAAAAo/6Y8JnkOz7Is/s72-c/kennedy.jpg' height='72' width='72'/><thr:total xmlns:thr='http://purl.org/syndication/thread/1.0'>1</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2715382590709147295.post-4708264141712640852</id><published>2008-05-02T11:56:00.005-04:00</published><updated>2008-05-02T14:46:16.895-04:00</updated><title type='text'>Baseball and Congress; ya gotta believe</title><content type='html'>&lt;a href="http://3.bp.blogspot.com/_iCxpqMeJ6qc/SBtb1wqy5VI/AAAAAAAAAAY/Noqm9swW-8Q/s1600-h/LOBBY+DAY+-+HALL+MTG.JPG"&gt;&lt;img id="BLOGGER_PHOTO_ID_5195847574257591634" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 227px; CURSOR: hand; HEIGHT: 167px" height="188" alt="" src="http://3.bp.blogspot.com/_iCxpqMeJ6qc/SBtb1wqy5VI/AAAAAAAAAAY/Noqm9swW-8Q/s320/LOBBY+DAY+-+HALL+MTG.JPG" width="260" border="0" /&gt;&lt;/a&gt;&lt;br /&gt;&lt;div&gt;I'm not much of an athlete, but I've always been a baseball fan. Growing up in the suburbs of New York City, I was fortunate to spend many weekends at Shea Stadium, watching the New York Mets. My parents, like many Mets fans of their generation, had been Brooklyn Dodger fans until the Dodgers deserted Brooklyn for LA. Being a real Brooklyn Dodger fan meant sticking with a team year in and year out, that frequently disappointed. My parents always told me that becoming Mets fans once the Dodgers were gone was logical for two reasons; they weren't the detested Yankees, and there was always hope for a winning season, but they would frequently let you down, like their Dodger predecessors.&lt;br /&gt;&lt;br /&gt;I was there, on a very cold October night at Shea Stadium, during the 1973 World Series. It was so exciting, and there was so much hope, with Tug McGraw's cheer of "ya gotta believe." But ultimately the Mets lost the series.&lt;br /&gt;&lt;br /&gt;Making change in Washington can be a bit like being a Mets fan. But April 14 and the weeks since, have been a winning streak for childhood cancer survivors and their families. You'll remember from my previous blog that the Children's Cause for Cancer Advocacy had it's first lobby day on April 14. 42 survivors and parents went to Capitol Hill to ask members of Congress to support HR 4450, Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act. The meetings that these advocates made had a direct impact, with 7 additional members of Congress agreeing to co-sponsor the bill since April 14! And, a Senate version of HR 4450 was also just introduced, by Senator Hilary Clinton.&lt;br /&gt;&lt;br /&gt;This is really just the beginning for this bill. All of us can make a difference and it will take the collective voices of survivors, friends and families to move this bill through Congress. We have to be patient and PERSISTENT. 42 advocates told their stories, and members of Congress listened. So, we can like those fans who only care about their teams when they are winners. There will be loses, and there will be wins, but "ya gotta believe."&lt;br /&gt;&lt;br /&gt;As a side note, since I have been in Washington, DC for almost 10 years, my adopted baseball team is the Nationals (I still root for the Mets too). The Nats started this season with a miserable record of 7 consecutive loses. Now, they won 7 out of their last 9 games.&lt;br /&gt;&lt;br /&gt;Tug McGraw had it right.&lt;/div&gt;&lt;br /&gt;&lt;div&gt;&lt;/div&gt;&lt;div class="blogger-post-footer"&gt;&lt;img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2715382590709147295-4708264141712640852?l=childrenscause.blogspot.com'/&gt;&lt;/div&gt;</content><link rel='replies' type='application/atom+xml' href='http://childrenscause.blogspot.com/feeds/4708264141712640852/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='https://www.blogger.com/comment.g?blogID=2715382590709147295&amp;postID=4708264141712640852' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/4708264141712640852'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/4708264141712640852'/><link rel='alternate' type='text/html' href='http://childrenscause.blogspot.com/2008/05/baseball-and-congress-ya-gotta-believe.html' title='Baseball and Congress; ya gotta believe'/><author><name>Craig</name><uri>http://www.blogger.com/profile/00510487325083406846</uri><email>noreply@blogger.com</email><gd:extendedProperty xmlns:gd='http://schemas.google.com/g/2005' name='OpenSocialUserId' value='17030430221670765910'/></author><media:thumbnail xmlns:media='http://search.yahoo.com/mrss/' url='http://3.bp.blogspot.com/_iCxpqMeJ6qc/SBtb1wqy5VI/AAAAAAAAAAY/Noqm9swW-8Q/s72-c/LOBBY+DAY+-+HALL+MTG.JPG' height='72' width='72'/><thr:total xmlns:thr='http://purl.org/syndication/thread/1.0'>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2715382590709147295.post-2442243229045595374</id><published>2008-04-16T11:55:00.002-04:00</published><updated>2008-04-16T17:26:51.189-04:00</updated><title type='text'>Survivors make a difference on Capitol Hill and even the cynics smile!</title><content type='html'>&lt;span style="font-family: arial;"&gt;Monday was a a beautiful Spring day in Washington, DC and a great day for young adult cancer survivors and the Children's Cause for Cancer Advocacy (CCCA).   CCCA held its first lobby day, which brought together 42 survivors and family members meeting with 20 House members or their staffs.  The lobby day followed a great weekend of learning, networking and fun - our second Rise to Action - DC conference, held on the Georgetown University campus, and attended by 130 survivors in their teens, 20's and 30's, plus family members.&lt;/span&gt;&lt;br /&gt;&lt;br /&gt;&lt;span style="font-family: arial;"&gt;As a former New Yorker and having lived in DC for almost 10 years, I'll admit a tendency to be a bit cynical (I like to say I'm a realist) about politics and the opportunity for individual citizens to have an impact in an environment that is cluttered with numerous advocates working for lots of worthy causes and professional lobbyists.&lt;/span&gt;&lt;br /&gt;&lt;br /&gt;&lt;span style="font-family: arial;"&gt;But CCCA's lobby day showed, to paraphrase Margaret Mead, that a small group of passionate survivors can go to Capitol Hill, share their stories, and motivate members of Congress to take action.  The primary bill that the advocates brought to Capitol Hill was HR 4450, the Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act.  Several of the meetings that advocates held with members of Congress or their staff yielded commitments to support the legislation.  This is just the beginning of a long process, but the voices and stories of young adult survivors created great momentum, and we need to continue building on their efforts.&lt;br /&gt;&lt;br /&gt;I'll provide updates as more news on this bill and other legislation important to survivors moves through Congress.&lt;br /&gt;&lt;br /&gt;-craig&lt;br /&gt;&lt;/span&gt;&lt;div class="blogger-post-footer"&gt;&lt;img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2715382590709147295-2442243229045595374?l=childrenscause.blogspot.com'/&gt;&lt;/div&gt;</content><link rel='replies' type='application/atom+xml' href='http://childrenscause.blogspot.com/feeds/2442243229045595374/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='https://www.blogger.com/comment.g?blogID=2715382590709147295&amp;postID=2442243229045595374' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/2442243229045595374'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/2442243229045595374'/><link rel='alternate' type='text/html' href='http://childrenscause.blogspot.com/2008/04/survivors-make-difference-on-capitol.html' title='Survivors make a difference on Capitol Hill and even the cynics smile!'/><author><name>Craig</name><uri>http://www.blogger.com/profile/00510487325083406846</uri><email>noreply@blogger.com</email><gd:extendedProperty xmlns:gd='http://schemas.google.com/g/2005' name='OpenSocialUserId' value='17030430221670765910'/></author><thr:total xmlns:thr='http://purl.org/syndication/thread/1.0'>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2715382590709147295.post-3135431169751254521</id><published>2008-03-21T11:44:00.002-04:00</published><updated>2008-03-21T12:47:44.413-04:00</updated><title type='text'>My very first blog - a bit nervous</title><content type='html'>Hi,&lt;br /&gt;&lt;br /&gt;Craig Lustig here.   I've done my best to delay, procrastinate, and avoid this, but my kind co-worker, Jess, has promised me it won't be too painful.  Reminds me of what the dentist says before he begins drilling.  And I keep questioning who really wants to read what I have I to say.&lt;br /&gt;&lt;br /&gt;Let me introduce myself.  I'm a 14-year pediatric brain tumor survivor, diagnosed as a young adult.  2 years of mostly unpleasant medical procedures, including a recurrence of the cancer, but I've been fortunate to have good health for the last dozen years.&lt;br /&gt;&lt;br /&gt;Like many other cancer survivors I faced the questions of what direction my life would take after cancer treatment and I was deemed "in remission."  This second phase of my cancer journey took me from living in New York City, working in advertising to being an active volunteer with several cancer groups, going to graduate school, and ultimately moving to Washington, DC to enter a fellowship program at the National Institutes of Health.  Fast forward a bit, I am currently the Executive Director of the Children's Cause for Cancer Advocacy, where I've been for close to 5 years.&lt;br /&gt;&lt;br /&gt;My goal is to post a blog once a week, and share something about the work of the Children's Cause for Cancer Advocacy (CCCA).  I'll also share recent articles of interest to survivors in their teens, twenties and thirties, and alert you to legislation in Congress, or other activities at the Federal and State level that  impacts cancer survivors.&lt;br /&gt;&lt;br /&gt;For this to be really successful, I want and need your feedback.  What's important to you as a cancer survivor, family member or friend?  If you've been part of a CCCA activity, tell me what you liked about it and how we can improve it.  What programs, projects or information would you like to see us develop?&lt;br /&gt;&lt;br /&gt;Rise To Action - DC is coming up, April 12-13.  This  conference for survivors and families is a great opportunity to meet and network with other survivors, gather information on a variety of topics, win educational scholarships, and yes, it's fun.  The conference is being held on the Georgetown University campus - more details and registration can be found on our website - childrenscause.org.&lt;br /&gt;&lt;br /&gt;-craig&lt;div class="blogger-post-footer"&gt;&lt;img width='1' height='1' src='https://blogger.googleusercontent.com/tracker/2715382590709147295-3135431169751254521?l=childrenscause.blogspot.com'/&gt;&lt;/div&gt;</content><link rel='replies' type='application/atom+xml' href='http://childrenscause.blogspot.com/feeds/3135431169751254521/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='https://www.blogger.com/comment.g?blogID=2715382590709147295&amp;postID=3135431169751254521' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/3135431169751254521'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2715382590709147295/posts/default/3135431169751254521'/><link rel='alternate' type='text/html' href='http://childrenscause.blogspot.com/2008/03/my-very-first-blog-bit-nervous.html' title='My very first blog - a bit nervous'/><author><name>Craig</name><uri>http://www.blogger.com/profile/00510487325083406846</uri><email>noreply@blogger.com</email><gd:extendedProperty xmlns:gd='http://schemas.google.com/g/2005' name='OpenSocialUserId' value='17030430221670765910'/></author><thr:total xmlns:thr='http://purl.org/syndication/thread/1.0'>0</thr:total></entry></feed>