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The Oncologist, the Patient and CKN — Sharing Knowledge

Introducing the DIPG Collaborative

jonathanaginSMALLby Jonathan Agin, Editor Childhood Cancer Awareness and Advocacy

 

Joke: What do you get when you put seventy of the world’s top physicians in one room, and forty childhood cancer parents and foundations in another?  Answer: Progress. 

 

 

On May 3rd and 4th, in Cincinnati, Ohio, the second DIPG Collaborative Symposium (www.dipg.org) occurred with amazing results and direction.  By the end of the day on Saturday May 4th, well over one million dollars was collectively raised and pledged by close to twenty different foundations and families to support the collaborative research that is mandated by this international group. 

 

            To understand what happened that weekend, it is necessary to take a step back in history.  DIPG is an inoperable brain tumor with an almost terminal prognosis.  On April 10, 2008 my family first learned about these four horrible letters.  For thirty-three months, my amazing daughter, Alexis Agin, fought a heroic and dignified battle against this disease.  DIPG took my daughter from us in the physical sense on January 14, 2011.  Since the time that we found ourselves in the DIPG community and the childhood cancer community as a whole, we watched as the prognosis for children diagnosed with DIPG remained stagnant.  I will never forget having a conversation with one of Alexis’ doctors while at NIH (National Institutes of Health).  She is a world recognized leader in the fight against DIPG and one of the most compassionate and caring physicians in the entire field of pediatric neuro-oncology.  This was rather late into Alexis’ journey.  We were discussing some of the research that was taking place and what it meant for the future.  She stopped me, and with an air of slight satisfaction she said, “no longer is DIPG a career killer for researchers.”  I took a step back.  That simple statement spoke volumes.  In the past, researchers, institutions and those who grant funding for the research felt that if you focused specifically on DIPG research it was the end of your career due to the almost terminal prognosis and complete lack of progress.  This changed during the course of Alexis’ battle. 

 

            Fast forward a little bit to the spring of 2011 back in Cincinnati, Ohio.  The idea was hatched to hold a very unique symposium at that time.  In one room would be some of the most distinguished physicians and researchers from the United States, Canada and all across the world.  In another room would sit members of foundations and families who have been touched by DIPG and childhood cancer.  The goal, to come up with a roadmap for collaborative research and create a funding pool to match.  We did not know how many people would attend.  After all, Cincinnati, Ohio is not necessarily the most glamorous of destinations.  In the end, it was standing room only.  This was a chance for a new dawn in DIPG research.  After the second and last day of the symposium, the parents and foundations walked into the room with all the researchers and announced that we had raised approximately $220,000.00 for the research that would come from the meeting.  As a result, several novel collaborative grants were funded, including the groundbreaking DIPG Registry.  (www.dipgregistry.org).  This registry allows physicians and patients all across the world to connect and be on the cutting edge of all the research, trials and data. 

 

            Fast forward two more years to this past May 2013.  DIPG is no longer a research black hole.  It is a disease that holds the key to understanding childhood and adult brain tumors.  As the most deadly of all pediatric brain tumors, if we are able to find a way to effectively treat, and more importantly, cure DIPG, the possibilities are limitless.  Consequently, this year’s symposium was equally well attended and the excitement within the room of researchers and foundations was palpable.  Well over a million dollars will be gathered to support the research and direction of the symposium and collaborative.  The research funded will not be single silo, but rather, it will all be collaborative in nature with shared results and data.  Institutions that continue to carry out single silo research and fail to share data, tissue and results will hopefully become a thing of the past.  Not only is it not prudent, but in the end, such research and practice is counterproductive in many respects.  In the end, it is my hope that the DIPG community not only is provided with a cure, but also, that what we have accomplished and will continue to accomplish through this endeavor can create an easily replicated model to follow.  Collaborative research not only makes sense, but it also can help to stretch dollars that much further. 

 

            In the coming weeks and months, the goal is to populate this section with pieces written by physicians and members of foundations who have participated in this exercise.  It will be an effort to create a virtual repository of information on the DIPG Collaborative to allow further growth of the ideas and mission.  

 

 

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8 Responses to Introducing the DIPG Collaborative

  1. This is a touching and informative posting. Thanks for sharing it as a source of hope to others who are following in your footsteps.

    • Jonathan Agin says:

      Deborah, thank you so much for your kind words. This Collaborative is changing the face of the DIPG landscape.

  2. Jonathan

    Thanks for this article. Thanks for the good news.
    I hope they all get to work really fast. My boy needs everyone to work on this to save him

    Ps; would love a Facebook “share” button.

    Thanks
    Julie
    Victor’s mom

  3. Rita Caplan says:

    We have been combing, searching, digging for information about DIPG since our grandson, Victor, who lives in Seattle, was diagnosed on Jun. 17 and continue to come back to dipg.org where we saw the announcement about the May conference. Bravo to you for posting this update from the May meeting. You and your family know exactly what we are all going through. We are trying to narrow down the fund/organization/study or other entity where the money we contribute will be used specifically for DIPG. Any brain tumor is a devastating diagnosis but this one is deeply, deeply personal.
    Thank you for posting; thank you for your courage; thank you for having the strength to cope with your loss but still continue to fight this fight like no other…

  4. Tonie Vaughn says:

    My 3 year old granddaughter Maiyanna was diagnosed May 22, 2013 a day I will always remember. DIPG….I have been living those letters 24/7 since. My son Wesley has spearheaded a Collect Cans for DIPG Cancer Research. Everyone we know in New Kensington PA are saving their cans for DIPG Research. Please send me an email as to where we can send the monies collected to help build the research bank. Thank you for not giving up on the future DIPG Kids whom one is my granddaughter, after the loss of your own.

  5. Tonie, thank you for the comment. I really appreciate it. I’m so sorry about your granddaughter Maiyanna. I hate to hear about other kids with DIPG. Thank you for the efforts with the cans. Truly amazing.

    I would suggest The Cure Starts Now. We really spearheaded the Collaborative. The money can be earmarked specifically for collaborative purposes. Website is: http://www.thecurestartsnow.org and rest assured the money will be used to fund the research that comes from the collaborative. Keep fighting.

    Rita:

    So sorry to hear about your grandson. There is no fairness at all in this cruel disease. I can only hope that someday really soon despite this awful diagnosis some doctor tells your family that they have a good treatment, they have a cure. Until then, the fight will not stop. Please keep up hope.

    Jonathan

  6. Anita Coons says:

    Hello,

    I learned about DIPG when I became involved with Caroline Cronk in Norwell, MA. This amazing and courageous angel lost her battle on July 18th. The Cronk Family raised more than 600,000 for research. I am writing Calle’s story about her time with my pony to donate to their fund.

    I hope DIPG continues to become the beacon for research to attack and eliminate this deadly pediatric cancer. The more awareness the better…..

  7. Pingback: DIPG: The hope and promise of a homerun cure | Cancer Knowledge Network

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