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Tag Archives: jonathan agin

The Valley of Echoes: Bridging the Communication Gap Between Patients, Patient Advocates, Researchers and Clinicians

jonathanaginSMALLby Jonathan Agin, CKN Section Editor

 

Recently I had the honor of speaking at the FACTOR Osteosarcoma Conference in Miami, FL, put on by the nonprofit MIB Agents.  This was the first osteosarcoma conference of its type.  For two days, sitting in an ornate and impressively handcrafted room at the Biltmore Hotel in Coral Gables, FL, 150+ researchers, clinicians, parents, patients and advocates breathed in the same air.  Throughout the conference, there were medical presentations involving surgical intervention, limb salvage, drug discovery, drug development, trial design, genetics, patient advocacy and much more.  The agenda was amazingly and stressfully jam-packed.  The purpose of the two day meeting was to bring stakeholders together in one room and discuss priorities for the osteosarcoma community.  The talk I gave was affectionately titled, “Guilty as Charged: Opportunities from Miami and Beyond.”  I was guilty of providing Ann Graham, from MIB Agents, and Theresa Beech, an osteosarcoma parent herself and a childhood cancer community outlier (think Malcolm Gladwell’s book Outliers), with the thought that if they wanted to see change for the osteosarcoma community, then they should think about having a conference.  And thus, welcome to Miami circa February 2017.

 

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World Cancer Day 2017: A few words from Jonathan Agin

jonathanaginSMALLby Jonathan Agin, Childhood Cancer Advocate

 

Someone once said that hope springs eternal.  In the context of cancer around the world, as 2016 came to a close and 2017 dawned, a palpable sense of hope continued to take root despite the backdrop of a cautious and uncertain landscape.  Peeling back the layers of hope, there are a number of dynamic factors that have fueled this optimism.  A greater understanding of the underlying genetic and molecular targets and drivers of cancer continues to expand almost daily.  Global efforts to unlock new targets and treatments, precision guided therapies, precision medicine, investigation into the use of drugs widely proliferated in other diseases, cheaper access to genetic testing, and on and on, all form the foundation of hope.  Hope is not created through alternative facts; rather it is nourished by steadfast effort.  For those of us in the cancer advocacy community, effort is never lacking.

 

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What September Means to Me: by Jonathan Agin

goldribbon by Jonathan Agin, CKN Section Editor

 

I find it difficult to put into words what the month of September means to me.  Truly difficult on several levels actually.  There is a part of me that actually does not look forward to the month.  It is a thirty-day period in which so many people across the country and the world – having heard the words “your child has cancer” or being moved to action for the cause of childhood cancer – focus an incalculable amount of energy.  It is a time that is reserved for childhood cancer advocates to stand on an elevated stage of awareness aimed at generating greater focus for the number one cause of death by disease in children in the United States.  It is a time when those who have been unwillingly drafted into the cause and those who have willingly decided that they should “do something” about childhood cancer seek to have gold emblazoned upon the collective conscious of a world that is plagued by so many worthy causes.  September is a month that allows those of us in this fight to galvanize and showcase our pain and anguish in a concentrated fashion for children with cancer.

 

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Editor’s Comment: When Do You Give Up On Treating A Child With Cancer

JonathanAgin2by Jonathan Agin, Childhood Cancer Co-Editor

 

As each word came into focus, I was riveted, gutted and waiting for the inevitable to unfold.  While I read the article entitled When Do You Give Up On Treating A Child With Cancer, by Melanie Thenstrom published on May 12, 2016 in the New York Times magazine, I pictured so much time spent in my daughter’s small pink room waiting for the inevitability of her death.  Alexis’ story did not include a time when she got out of bed, ran around and ate pizza, as did Andrew Levy’s.  Andrew’s story, in the end, is the one that all those who hear the words, “your child has cancer” hope and pray for.  I read Thenstrom’s piece with some outside hope, although diminishing throughout, not knowing how the story unfolded.  Waiting for that next sentence to bespeak of a tragic outcome.  The same outcome that I witnessed as my daughter took her final breath on January 14, 2011 shortly after 3:00 pm.  I am happy for the conclusion that the Levy’s experienced thus far, and I hope that they make it out of the woods on the long journey that remains ahead.  And while I am being honest, I am also jealous that Alexis’ story did not have such an ending.

 

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Tempered Hope for Children with Cancer: Current Initiatives in the United States

jonathanaginSMALLby Jonathan Agin, CKN Childhood Cancer Advocacy Co-Editor

 

In the United States these days, there are discussions of the moon, precision medicine, targeted therapies, priority review vouchers and moving into the 21st Century.  These are all buzzwords that touch directly or indirectly upon the efforts to treat cancer and other diseases in our population.  These efforts are intricate and complicated to say the least, and at the end of the day, the childhood cancer advocacy community is playing a game of musical chairs in an effort to find a seat at the table.  Ultimately, there is no way of knowing just what role our voices will play, and more importantly, what the overall impact will be upon the childhood cancer community as a result of these initiatives.  Nonetheless, the simple fact that there are these potential opportunities to see gains is enough to warrant tempered optimism.

 

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Advocating for Your Child: How much is too much?

jonathanaginSMALLby Jonathan Agin, Co-Editor Childhood Cancer Awareness

 

My daughter Alexis was diagnosed with a terminal and inoperable brain tumor when she was twenty-seven (27) months old.  Pulled into a small room on April 11, 2008, the words continued to pour out and dance in my head as the gravity of the diagnosis became worse and worse.  Alexis was given 6-9 months to live, maybe a year or a little longer, with current treatment options.  In an instant, the safety of parenting a child in any normal fashion was destroyed.  As the reality of the diagnosis set in, and countless hours were expended researching conventional and unconventional options for treatment, another emotion crept in quickly: desperation.  Alexis was given a death sentence from the first day of her diagnosis.  Informed immediately that there was no conventional treatment that was effective to treat or cure her cancer, the race was on to look under every stone.

 

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