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Introducing Jonathan Agin: CKN Editor, Childhood Cancer Awareness and Advocacy

jonathanaginSMALLby Jonathan Eric Agin JD, Editor, Childhood Cancer Awareness and Advocacy

The truth is that I never had any desire to be a part of the childhood cancer community.  I would never have chosen this disease as my “White Whale.”  Childhood cancer in general is depressing and heartbreaking.  Sure, to those outside of the community who have not heard the words “your child has cancer” there are moments of inspiration sprinkled among the very difficult reality.  And so, when cancer decided that it would enter into my house on April 10, 2008, the issue of desire was no longer one of self-determination.  Childhood cancer, in the form of diffuse intrinsic pontine glioma (“DIPG”), an inoperable brain tumor, forced us into a desperate attempt to save our then two year old daughter Alexis Agin. 

The transformation into a childhood cancer advocate, lobbyist and writer has taken five years.  It began the day my wife and I heard those horrible words back in April 2008.  And, when my daughter tragically lost her battle on January 14, 2011, my resolve was cemented.  I see the journey that I have been on not as my own, although I have certainly been on a path to reinvention, but more to the point, I am continuing Alexis’ fight.  It is her inspiration and resolve that I continue.  Alexis is the true hero and taught me more about life than any other experience to date.

Throughout the course of the past five years, I have been struck by how little awareness of childhood cancer there is in the United States, let alone across the borders.  I have been stunned by how little money is spent in the United States by the federal government specifically for childhood cancer research.  Despite the fact that cancer is the number one cause of death by disease for children, it appears evident that the United States government has not prioritized childhood cancer research.  And these realities, as well as watching the struggles of my daughter and countless numbers of other children have brought me to this point.  It is a crossroads of sorts, a junction in the road.  As the path unfolds, it singularly draws me to fight the disease that stole so much from my family, not the least of which is my amazing daughter, Alexis. 

When I was first asked to act as the Editor for this section I immediately understood the opportunity.  Like the United States, childhood cancer is greatly underfunded in Canada.  It is an issue that Canadians and Americans alike who have had to fight this battle understand all too well.  What this lack of funding and awareness creates though is opportunity.  International collaboration creates the ability to utilize the best and brightest researchers and advocates from all over the world to work through regulatory and governmental issues that maintain the unfortunate status quo.  It is far time that we in the childhood cancer community think globally. 

My hope is that through this section, childhood cancer gains an additional spotlight.  An additional outlet for awareness, funding, treatments and ultimately a cure.  My hope is that by growing this platform, we broaden the scope of collaboration and unity in the community beyond the borders that arbitrarily divide in this battle.  Childhood cancer is not simply a problem of one country.  It is a disease that infiltrates all walks of life, all races, nationalities and religions.  It is a disease that indiscriminately selects its victims and in many instances the children unfortunately are left to battle in anonymity.  This is my goal, this is my fight, this is my daughter’s journey. 




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5 Responses to Introducing Jonathan Agin: CKN Editor, Childhood Cancer Awareness and Advocacy

  1. Bravo. Thanks for turning the pain into action, Jonathan.

  2. Joe Baber says:

    I am sure you will bring renewed awareness to childhood cancer through the Cancer Knowledge Network. Canadians and Americans face the same battles and hurtles that only awareness will tear down. Looking forward to seeing your progress. Thanks for all you do.

  3. linda irwin says:

    Childhood brain cancer has touched our family as well, Jonathan. Our grandson, Johnny, died at 7 years of age, after a courageous 6 year battle against the disease. For my husband & I it was doubly hard as we not only had to watch Johnny suffer, we also had to watch as our daughter bravely coped with staying strong for her son & other children, reserving her own agony for those moments alone late at night while her family slept.

    You are to be commended for turning this devastating blow into doing something positive for others in memory of your Alexis. She would be proud.

  4. Marti W Lew says:

    Dear Jonathan,
    My husband, a pediatric oncologist here in Bangor, Maine, was recently notified by a local rep of the American Cancer Society of their decision to pull their support from the camps for children with cancer. Stunned and alarmed I began doing some research, which led me to you and your informative article entitled: Friends Don’t Let Friends Relay. Thank you for the article, it was very helpful.
    I also contacted a local rep of the ACS and After a telephone conversation I was even more concerned. This person seemed to have little or no knowledge other than confirming the fact that indeed the ACS was withdrawing their support.
    This morning I created a petition through to request that ACS change this plan of withdrawal. I would like to ask for your support for this cause and if you are interested you have my email address. Thanks in advance and thanks for all you are already doing to educate people of the uphill battle kids with cancer face.

  5. Marti Lew says:

    I left a lengthy reply yesterday on this site, somehow ending up in cyber space I suppose.

    My husband is a pediatric oncologist here in Bangor, Maine. When I read a blurb online about the American Cancer Society’s already in place plan to withdraw support to cancer camps for kids I immediately questioned him. He spoke with a local ACS rep here in Maine who did confirm this. I am now in the process of gathering signatures petitioning this organization to reconsider. My message is simple. I am not asking for additional funding, only that they reconsider their plan to discontinue this very small amount of funding. Here in Maine that amount is $30,000 once a year. (probably an amount equal to a coffee budget for most research labs).
    Mr Agin, I appreciate all you have done to advocate for children with cancer, I read your article, Friends Don’t Let Friends Relay and it was an eye opener.
    I would like your help with my petition, if only in words of advice or what steps I can take next. My email is posted above, thank you in advance for any help you can provide. Marti W. Lew

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