Max Cure Foundation Welcomes Jonathan Agin
I want to introduce our followers to Jonathan Agin who joined The Max Cure Foundation (MCF) as of January 1, 2015. I met Jonathan as a result of our being members of the Coalition Against Childhood Cancer (CAC2). I am a member as a result of MCF being one of about 74 pediatric cancer foundations, which are members, and Jonathan is one of 23 individual advocates. We are both attorneys trained to advocate for our clients. We also are both involved in advocating for children with cancer and their families, each of us having been directly affected by pediatric cancer.
Jonathan’s 4 year old daughter, Alexis, passed away from a rare childhood cancer known as DIPG. Childhood cancers generally have an 83% five year survival rate (after that time, children who have not passed away are considered “survivors”). The 5-year childhood cancer survivors have an 8 times greater mortality rate due to the treatments they endured to battle the cancers and due to the cancers themselves, 18% will die within the following 25 years, and 98% will have side effects for the balance of their lives. Nonetheless, those not among the pediatric cancer community champion the fact that 83% of children with cancer survive 5 years following diagnosis. Indeed, the Director of the National Cancer Institute (NCI), a division of the National Institutes of Health (NIH) has gone on record as saying with such a high survival rate, the Government “must be doing something right.” He said this in response to criticism that pediatric cancers receive only 3.9% of research funds from the National Cancer Institute.
Jonathan, like me, is a litigation attorney. But, unlike me (with my grandson Max being a 7-year survivor), Jonathan and his wife Neely, lost their precious daughter, Alexis, to a disease that has less than a 1% survival rate (and it has been said that those few that survive, may have been misdiagnosed). At the September, 2013, Congressional Caucus on Pediatric Cancer Summit in Washington, D.C., one of the speakers was trumpeting the fact that the 5-year survival rate generally for childhood cancers was over 80%. From Jonathan’s response to that question, I knew that he was a force to deal with among our community. He immediately challenged the speaker, telling him that his 4 year old daughter succumbed to a cancer with less than a 1% 5-year survival rate and until our community and those in the Government understand that childhood cancer is not a “one size fits all” situation – there are over 16 major types of childhood cancers and over 100 subtypes – and recognize that the 80% survival rate is misleading and does not tell the whole story, progress will be stalled in finding cures and less toxic treatments for children with cancer. Of the 16 major types of childhood cancers, several have 5 – year survival rates of under 50%. Jonathan was also not shy at a meeting I attended at the White House (we were among a select group of pediatric cancer advocates invited to attend a White House conference where those in the executive branch of Government wanted to better understand the needs of childhood cancers and to hear what some in the community had to say). Jonathan challenged the Director of NCI, the keynote speaker at the conference, inquiring how the Government justifies the allocation of only 3.9% of its funds to cancer research for pediatric cancers. Jonathan approached the Director at the conference and asked for a one-on-one meeting with him – that meeting was ultimately scheduled and attended not only by Jonathan, but also by other leaders among the childhood cancer community. For those that have followed my efforts over the last few years in advocating for children with cancer, you may recognize a similarity between Jonathan and me – both being aggressive trial attorneys who are directing that aggressiveness to our mutual passion, namely, to benefit kids with cancer and their families.
I was recently told by Jonathan that a family from Texas with a child with cancer had read one or more articles that Jonathan had written on the subject that appeared in the Huffington Post and wanted to support his work in the area of childhood cancers. They offered to give Jonathan a grant for one year to allow him to continue his efforts in advocating for the cause and in raising awareness generally of the needs of pediatric cancer. Jonathan was not affiliated with a 501 ( c ) ( 3 ) non-profit pediatric cancer foundation (he was an individual advocate) that would allow the receipt of a tax deductible grant. I immediately saw the opportunity to raise the visibility and the credibility of The Max Cure Foundation and offered Jonathan a position with MCF. The MCF Board of Directors unanimously supported that offer. I am privileged to report that Jonathan accepted the offer and that the Texas family told us that in giving the grant to The Max Cure Foundation, it was joining our effort to “Roar For A Cure” until one is found. Jonathan, as noted, started with us on January 1st.
In addition to other services to be provided by Jonathan over the next year, he will be a frequent contributor to our Monthly Newsletters, with his first contribution being in February, 2015, when Jonathan will introduce himself and his family to our 45,000 Facebook Friends and others. We will then explain in more detail the services Jonathan is expected to offer to MCF. When the Plotkin family formed MCF in December, 2008, it was our goal to make a significant contribution through MCF to the cause of childhood cancers. Our mission initially encompassed funding research and assisting families battling the disease. The mission was formally expanded by the MCF Board of Directors in 2014 to include advocacy (something I have personally been actively involved with since 2011). The addition of Jonathan to the MCF team in 2015 will allow us to not only continue to raise awareness to the cause, but also contribute significantly to our ability to maximize our resources to make the significant difference we set out to do when MCF was formed in 2008.
JONATHAN, MCF WELCOMES YOU AS A MEMBER OF THE MAX CURE FAMILY AS IT CONTINUES ITS EFFORT TO BECOME A LEADER IN ROARING FOR A CURE! I am humbled to say that our joint efforts will not only be in honor of Maxwell Plotkin, a childhood cancer survivor, but also in memory of Alexis Agin, whose life was cut short at age 4 due to the horrific disease that takes the lives of more children in this country than any other disease – indeed, more than all other diseases combined!