Tag Archives: Richard Plotkin

Max Cure Vice-Chair Attends RBB Graduation

Author: Richard Plotkin, MCF Vice-Chairman

Max and Qualeek (3)I recently had the pleasure of attending the 5th grade graduations of my grandson, Max Plotkin, and of Qualeek McNeil. These 11 year old boys have much in common in addition to the fact they are looking forward in September to entering into middle school, including the fact they were both afflicted by childhood cancers at young ages, Max on the eve of his 4th birthday and Qualeek when he was 6 years old.  Max was diagnosed with B-Cell Lymphoma and Qualeek with brain cancer.  Qualeek, due to the chemotherapy treatment he received, is partially deaf, one of the insidious side effects experienced by pediatric cancer survivors.  Max is considered a childhood cancer survivor whereas Qualeek still goes for periodic treatments but thankfully every indication is he, too, will be a survivor of pediatric cancer.

Richard and Max 5th grade graduationMax graduated from the Smith School in Tenafly, New Jersey, an upscale suburban community, just minutes from Manhattan.  Qualeek graduated from P.S. 309 in the Bedford Stuyvesant area of Brooklyn, also just minutes from Manhattan.  Despite their respective proximities to Manhattan, the communities in which these two boys reside are as different as two communities could be.  However, what was not different was the pride felt by the parents and relatives of those graduating from the 5th grade and the joy that filled the two school auditoriums, one in Tenafly and one in Bedford Stuyvesant. A significant moment for me at Qualeek’s graduation, in addition to Qualeek winning a medal placed around his neck for his participation in music activities, came from one of the speakers who looked directly at the children, all of whom appeared to be African American or Hispanic, telling them that if they work hard and continue in school, there is no reason why they could not become doctors or lawyers or indeed, as stated by the speaker, “as recent events have proven, even President of the United States.”  Wow, that was a powerful message and reinforced how significant it is that this country elected, and then re-elected, an African American as President.  The program distributed at Qualeek’s graduation prominently displays the following words on the top of the cover page, “We Believe, We Will Achieve.”

Qualeek was among the first three children whose families were included in the Roar Beyond Barriers program launched in New York City in November, 2011. He and his family attended our Family Day Carnivals in East Hampton during the summers of 2012 and 2013, having stayed at my home in Amagansett during their 2012 visit.  Qualeek and his mother, Felicia, attended the Gala on the eve of the September, 2012 Golf Outing with Trent Tucker’s All4Kids Foundation and met celebrity guests such as Patrick Ewing, Charles Oakley, John Starks, Greg Anthony and Trent Tucker, all having played for the Knicks, and Mike Woodson (then coach of the Knicks) and Howard Cross former NFL All-Pro player for the Giants – and many other celebrity athletes and entertainers. A special friendship developed between Max and Qualeek at these events, a friendship that came about because it is evident that childhood cancers do not discriminate based on race, creed, or socio economic circumstances.

Richard and Qualeek graduationI was honored when, several months ago, Felicia told me that Qualeek asked if I could attend his graduation (I told her I would not miss it for the world) and was particularly moved when I saw the smile on his face as he saw me waiting outside P.S. 309 as he and Felicia approached the school for Qualeek’s special day. I quickly understood how significant the Roar Beyond Barriers program is not only in that it financially assists low income families battling cancer in their children, but it also gives the message to the children afflicted with cancer that others care about them.  That I was selected by Qualeek to be one of his four guests, made me realize that The Max Cure Foundation is indeed making a difference in the lives of children with cancer and their families.

It is Often More Than Money Given to Charities That Justifies a Foundation’s Existence

Richard PlotkinFoundations should not be judged solely on how much money they raise for charities.  Often its actions are based on who they know, just making a call, not expecting anything in return.  In other words doing the right thing in life can be equally, if not more, rewarding than donating funds to a particular cause.  There is an old saying “there are those that talk the talk, and then the ones who walk it.” Richard Plotkin, Vice Chairman of The Max Cure Foundation, a 501 ( c ) ( 3 ) non-profit charity (MCF) devoted to making a difference in the area of pediatric cancer, retired in 2008 after practicing law for 38 years as a partner in a regional law firm, Day Pitney LLP, to form MCF with his family following his grandson, Max’s, diagnosis of cancer (Max is now 10 years old and considered a six year cancer survivor).  MCF, including the period of one and one-half years prior to its formation in December 2008 through the Max Cure Fund, has given over $1.5 million to pediatric cancer causes – to fund research and through its Roar Beyond Barriers program, to financially and emotionally assist families (generally low income or military) while their children are battling the disease.

A few months ago Richard received a call about a young boy, age 10, the same age as his grandson, with a rare form of brain cancer called Diffuse Intrinsic Pontine Glioma commonly referred to by the acronym DIPG.  Richard knew the disease was generally terminal and afflicted children up through the pre-teen years.  Richard, who learned of this family through one of MCF’s supporters, referred the family to Dr. Oren Becher who is doing research at Duke University Medical Center in an effort to find a cure for DIPG, one of the many cancers that afflict children.  Of the 13,500 children diagnosed with cancer each year, approximately 200 to 300 are afflicted with DIPG. MCF has financially supported Dr. Becher’s research over the last few years. Richard was recently told by the family that their journey started in earnest from the time communications with Dr. Becher began.  In fact, Richard was told the family is in continuous contact with Dr. Becher as he has become a central figure on the team the family assembled to attack the disease and to hopefully cure their son or, if that is not possible, to at least extend his life.  Another significant member of the team is Dr. Sharon Gardner, an oncologist at NYU Langone Medical Center, specializing in children’s cancers, including those affecting the brain. The family looks to Dr. Gardner to coordinate the efforts of the team. MCF has worked with Dr. Gardner in connection with its Roar Beyond Barriers program.

Drs. Becher and Gardner in concert with other medical professionals on the team recommended the boy be given a new drug developed by Novartis that was still in trial known as BKM 120.  It had been proven to be successful in women with breast cancer and some other adult diseases.  The FDA granted what is known as a “Compassionate Waiver” to allow the use of this drug to determine if it had any positive impact on the boy’s tumor.  He had been on this drug for some time with good results but after a while, its effectiveness had waned.  He had however far exceeded the two months that he was given to live by one of the doctors the family first consulted.  Dr. Becher refused to give up hope and based on research he had been doing, recommended that BKM 120 be combined with two other drugs, one of which is manufactured by Novartis and the other by another drug manufacturer.  Novartis’ approval and cooperation was needed.  Time was of the essence.  Richard was contacted by the family to determine if he knew anyone at Novartis.  Richard did not but stated he would determine if anyone at his former law firm had any such contacts.  Through Richard’s immediate efforts, with the assistance of two of his former law partners, the family was able to speak to the Sr. Vice President, U.S. Clinical Development and Medical Affairs, at Novartis who was in England but volunteered the family could call him at any time. This was just last week.  The family recently met with Richard, and it was there he was shown a recent video of the youngster climbing a rock wall at a gym – even though his mobility was weakened due to the disease.  When the boy reached the top of the wall, he gave the victory sign to his Dad below.  Seeing that video and speaking to the family underscored to Richard that he made the correct move retiring from the practice of law and devoting his life to making a difference in the area of childhood cancers – perhaps, as with this young boy, one child at a time.

Richard explained to the family that all he did was introduce them to Dr. Becher and later, communicated with his former law firm to see if anyone had any dealings with Novartis; from that, one of his former partners, after speaking with Richard, reached out to folks at Novartis; one of the Novartis representatives who was contacted reached out to the head of the entire drug development function at Novartis – he, as noted, was in England and invited the family to call him immediately, even if in the middle of the night in England.  They connected and Novartis took it from there, immediately getting the whole Novartis drug development group involved.  It became a top priority at Novartis and, as of earlier this week, things were progressing, with the hope that within a relatively short time, the requisite commitments and approvals will be forthcoming in order to permit the treatment to start. The health provider has already approved the treatment with the combination of the three drugs. 

Could this series of events prove to be a turning point for pediatric cancer and how Big Pharma looks at our children who need them more than ever before?  Not only will this potentially be life saving for the youngster (or at least extend his life), but it will potentially be a major accomplishment  for Novartis if the drug combination, recommended by Dr. Becher, improves the boy’s condition, expands his life and potentially, what we are all praying for, allows the child to live a long and healthy life.   The benefits to Dr. Becher, who recommended the treatment protocol, if it works, would be monumental – he has devoted his life to the task of studying DIPG and attempting to find a cure.  He is the man “behind the curtain” who we all take for granted until we need him. What this story demonstrates, among other things, is that the steps taken by a family faced with one of the worst nightmares imaginable, a child with cancer, can reshape the way doctors, pharmaceutical companies and insurers can all band together for a  greater purpose – achieving good medical treatment.  

So remember, “don’t be so quick to judge a book by it’s cover,” or as in this case, a foundation by its size. Small foundations  know how to Roar for a Cure, and in this case, the Roar was heard and embraced.

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