Category Archives: Blog

Dunk Your Kicks Comes Back to Wine Country

DYK at Santa Rosa Marathon

Start cleaning out your closets Santa Rosa because The Max Cure Foundation is coming to town with our signature Dunk Your Kicks campaign. We want to extend a roaring thank you to the team at The Santa Rosa Marathon for inviting Max Cure to have a booth during their expo and on race day, August 22nd through the 24th. The Santa Rosa Marathon’s Health and Fitness Expo will be held at the lovely DeLoach Vineyards will feature a variety of national and local vendors. Among those you will find our team of volunteers asking for your sneakers!

“When we met the Santa Rosa Marathon team we were welcomed to this event with open arms. The individuals who run this event could not be more supportive and we are lucky to be working with them,” said Max Cure Marketing Director, Erica Bailey.   “Our Dunk Your Kicks collections have been widely supported in California so far… Everyone we meet, like the Santa Rosa team, has gone above and beyond to get the message out and we are truly touched by their efforts.”

If you are running the in the marathon or a spectator at the event, take an extra bag with you and pack up your used sneakers and running shoes. Find the Max Cure Dunk Your Kicks booth and Dunk Your Kicks for pediatric cancer causes.

We look forward to seeing you there, taking a stand against pediatric cancer, one pair of sneakers at a time.

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.

From Adversaries to Partners | Richard’s Take on the NCI

Richard PlotkinI was honored to be invited to the February 21, 2014, all day conference at the National Institute of Health (NIH) in Bethesda, Maryland, hosted by the National Cancer Institute Director’s Consumer Liaison Group (DCLG) which included several representatives from the National Cancer Institute (NCI), a branch of NIH. The purpose of the conference was to address the needs of pediatric cancer in an effort to better direct those, like me, who advocate for increased government funding. At the conclusion of the meeting, I had a much better understanding of that which needed to be accomplished to meet that goal. Indeed, I apologized to those present from NIH/NCI for attacking them as I have done for giving “short shrift” to the needs of childhood cancers and said that rather than treat the Government as an adversary, as I had done over the last few years with my criticism of its allocation of funds to pediatric cancer causes, I would from that day forward, until proven otherwise, treat it as our partner.

By way of background, there are over 16 major types of pediatric cancers with those major types being broken down further to over 100 subcategories. Each subcategory requires different treatments. In 2012, NCI allocated 3.9% of its budget for cancer research to pediatric cancers, with the balance to adult cancers. In the latter category, 10% of the funds are allocated to breast cancer; 5.9% to lung cancer; about 5% to prostate cancer and so on. When I had previously communicated with NCI and complained about what I perceived as unfair allocations, I was told it was based on volume – there are “only” 15,500 children each year diagnosed with cancer (19 and under), with “only” 40,000 or so children being treated in any one year. The survival rate from 5 years following diagnosis is 80%, with 370,000 pediatric cancer survivors (survived the five years) living in the United States. The head of NIH had previously testified at a hearing and when challenged on the 3.9% allocation said, “With an 80% survival rate, we must be doing something right.” Nothing can be further from the truth. In fact, if a form of leukemia is removed (ALL) from the equation, which results in 24% of the childhood cancer cases and has a 94% survival rate, the five year survival rate is reduced to about 65%. Also, those children that survive the five years have a ten times greater mortality rate due to heart and liver disease and to reoccurrence of the cancer. Two – thirds of the survivors exhibit side effects over their lifetimes (ranging from relatively minor to substantial, often debilitating) from having been exposed to toxic chemotherapy, most of which had been developed for adults but used on children.

Unlike most adult cancers, childhood cancer research relies almost wholly on the Government for funding. Pharmaceutical companies (industry) do not invest the resources needed to develop pediatric cancer drugs due to the limited population consisting of kids with cancer and given the many subcategories within that limited group. Private foundations do not make a significant impact in the overall funding for research. NCI must step up. When talking in terms of volume, consider this fact. Prostate cancer effects men over 65. It has been documented that the progression of prostate cancer is not aggressive and is slow moving, with most men affected, even if they were not treated for their cancer, would die of some other cause, not cancer. But prostate cancer receives about 5% of the NCI allocation of funds (against the 3.9% allotted to children). Breast cancer receives the highest allocation at 10% of allotted funds, notwithstanding that from industry and private sources, breast cancer research receives about $6.0 billion annually. Lung cancer which primarily affects adults who assumed the risk of being diagnosed with lung cancer by smoking likewise receives a much higher allocation of funds at 5.9%. Should volume of cases determine that funding by NCI for lung cancer research be 150% of what is funded for children’s cancers? Looking at this objectively, which I try to do as an advocate, notwithstanding my personal connection and commitment to childhood cancer causes, I suggest the answer to the prior question is self-evident, a rousing, “No!”.

So, I went to the meeting at the NIH as if I were preparing to try a case in court (my prior occupation was as a commercial litigation lawyer), ready to go for the jugular. Intending to “take no prisoners” as I would convince our adversary, the NCI, the error of its ways. I had thought that by the end of the day, I would beat down those uncaring bureaucrats and carry the torch to victory for our children who are, and those that will be, afflicted with cancer. Well, was I in for a surprise, stating at the end of the meeting, as noted above, “I came today thinking we are adversaries and I am leaving knowing that we are partners in the fight for children with cancer.” I will elaborate on this in the newsletter in April as to what changed my mind.

– Richard Plotkin, Vice-Chair, The Max Cure Foundation

Honeywell Brings Dunk Your Kicks Back to Arizona

The Max Cure Foundation launched its Roar Beyond Barriers Arizona program at Phoenix Children’s Hospital in October of 2013. Max Cure ambassadors brought Dunk Your Kicks to Arizona by getting the Arizona State University Sun Devil Club, Audio Express and other local businesses and community organizations involved. The monies raised from the sneaker collections in Arizona go towards supporting a 5-year-old and a 9-year-old boy, both from single parent homes and both battling different forms of brain cancer.

We are thrilled to announce that Honeywell’s Phoenix and Tempe Wellness Center locations will be keeping the Arizona Roar Beyond Barriers program alive through their support. Honeywell employees can now clean out their closets of used sneakers and “Dunk Your Kicks” for pediatric cancer causes on their way to work. We were impressed to hear that the organization has been collecting sneakers for over four years and recycling them to better the planet overall. When we told them how Max Cure can take these sneakers and make a difference not only for the planet, but people in developing nations, and families battling pediatric cancer, their support was almost immediate. There are donation boxes located at the Honeywell Wellness Centers in both Phoenix and Tempe locations.

IMG_0428“At the Honeywell Health & Wellness Center, we make sure our members replace their kicks on a regular basis to avoid injuries and provide optimal support for their workout. So instead of just throwing those shoes away several times a year we were looking for a place we could donate them instead and found Dunk Your Kicks. What a great cause! So instead of just filling up landfills we feel it is much more beneficial for us to donate those old shoes in order to help families with children battling cancer.” Says Cheri Fisher, Honeywell Health and Wellness Center’s Program Director.

The Max Cure Foundation would also like to give a special shout out to our Arizona Dunk Your Kicks Ambassador, Serena Knierim, who was a key factor in Honeywell learning about The Max Cure Foundation’s Dunk Your Kicks campaign.

‘One Man’s Junk’ Becomes a Treasure For Pediatric Cancer Causes

first purchaseThe first sale benefiting Max Cure Foundation of the art of John D. Herz was made this week.  It consisted  of two graphite pencil drawings; an original, “Bridgehampton Polo”, and a limited edition Giclee, “One Man’s Junk”.  The new owners, a medical doctor and his wife, recently renovated their living room and were looking for art to put on their walls. They learned of John’s artwork through the Max Cure Foundation, saw the different drawings on his website, loved what they saw, could not make up their minds between the two pieces and ultimately decided to buy them both.  From their purchase Max Cure Foundation received $1,350.00!  This is just the start of what Max Cure Foundation expects to be a win-win-win for Max Cure Foundation, for the artist John D. Herz, and for the public who purchases the art.

“We found ‘One Man’s Junk’ to be an incredible conversation starter, perfect for the room where we entertain the most. We will also know every time we look upon the artwork, that we also supported a cause very near and dear to our hearts” said the couple.

The Max Cure Foundation currently offers three of John’s amazing works available for immediate purchase through website. You are now able to purchase, a John D. Herz original drawing, museum quality, signed and numbered limited edition Giclee, or print through The Max Cure Foundation with a large portion of the proceeds going towards advancing Max Cure’s mission. The purchaser will be given a receipt which would allow a tax deduction subject to the applicable law. If you prefer a different piece of John’s artwork not currently available for purchase online, you may contact us here for availability.

Pediatric Cancer

                                                                                                                                         

“While visiting Mystic, Connecticut, I came across a wonderful store named ‘Radio Waves’. The store sells a unique assortment of gifts and nostalgia. I loved the window display and took many photographs. When I looked at the images I saw a great still life drawing waiting to be rendered. The portion that I chose to draw has so many different textures, from the assorted wood grains, to a trumpet, and a lampshade made of shells. I always like to challenge myself with my art and this challenge proved to be really fun.” 

The museum quality, limited edition, signed and numbered, matted and framed Giclée prints are available for immediate purchase here with a substantial percentage of the proceeds going to support The Max Cure Foundation. Posters are also available for only $50 here

horse picture“Not long ago I had the opportunity to meet a wonderful photographer, Stephen Lang. When he shared his images with me I was awed by many of them. These four beautiful stallions frolicking in McCullough Peaks, Wyoming, really caught my eye so I made arrangements with the photographer to draw them. I chose to do the original on a 60 inch board. The final dimensions are 60″ X 28″. When I consider a subject to draw it always has to bring out an emotion in me. The raw power of these horses and their majestic playground just grabbed me.”

The museum quality, limited edition, signed and numbered, matted and framed Giclée prints are available for immediate purchase here with a substantial percentage of the proceeds going to support The Max Cure Foundation. Posters are also available for only $50 here.

The Domino Effect w-Mats“As an artist, I see this drawing as a portrait of men playing dominoes. Even though you can’t see their faces their hands tell their story. The wrinkles and age spots on two of the men’s hands and the smoother skin on the other men give a sign of their age. Hands can be as telling as a face. Skin texture is like a landscape, within the lines and wrinkles there are shadows and highlights.”

The museum quality, limited edition, signed and numbered, matted and framed Giclée prints are available for immediate purchase here with a substantial percentage of the proceeds going to support The Max Cure Foundation. Posters are also available for only $50 here.

Every month John will feature additional artwork available for a limited time to Max Cure supporters only. Stay tuned for more information, or click here to add a John D. Herz piece to your art collection and support The Max Cure Foundation.

Dunk Your Kicks Comes to the San Luis Obispo Marathon in Memory of Sam

Every individual or family deals with loss differently. A few months ago, The Max Cure Foundation received a message on Facebook from a Mother asking if we could bring Dunk Your Kicks to the San Luis Obispo Marathon in April. We were thrilled to receive such an invitation and inspired by this woman’s efforts to make a difference in the fight against pediatric cancer. Little did we know at the time, this Mother lost her 8 year-old son, Sam, to cancer on October 20, 2013.

SamSam was diagnosed with brain cancer in September, 2012, 13 months prior to his passing. Sam’s life before then was normal and happy, until almost overnight Sam started feeling funny, falling down, and having seizures. Sam’s parents got him the medical attention he needed right away and the roller coaster started from that moment. The family was told through chemotherapy and radiation treatments developed for adults, he may be able to survive.

From September to April Sam continued these treatments, and then in May of 2013, Sam’s family was told that “radiation and chemotherapy were no longer an option because the tumors were too massive and were located in the portion of the brain which would result in too much collateral damage. There were no clinical trials open for this particular type of tumor.” Again, their worst fears were realized, they are told to prepare for the loss of their son. How many times do parents need to hear there is nothing that can be done for their child before funding for research for pediatric cancer drugs is substantially increased?

SamSam’s Mom writes a blog entitled “Enough For Now” as part of her healing and coping methods. She shares Sam’s story from beginning to end, but in one particular post, she wrote something that moved us. “Perhaps the treatments he received in the first 7 months did some good. Maybe the thing was at least slowed down. Sam’s quality of life was excellent up until late May. We felt pretty normal most of the time. I had moments of doubt and fear, but I had hope too. I constantly replayed the words of the nurse practitioner on Sam’s team: in the 20 years she worked in the brain tumor program they only lost 2 kids to tumor growth. It’ll be 3 now.”

Although Sam lost his battle, his family has refused to stop fighting the war. From pancake breakfasts to Lemonade and Love, Sam’s family and friends have done what they can to raise money for research so that one day we can find a cure, and no more “Sams” of the world will be lost. This time they are bringing The Max Cure Foundation’s Dunk Your Kicks campaign to California in a big way.

Max Cure Foundation collects used sneakers, and with the help of an international recycler, the sneakers are then sold as affordable footwear in developing nations. A portion of the monies raised from the sale of these sneakers will go to the Max Cure Fund which underwrites a laboratory at Memorial Sloan Kettering Cancer Center which treats children and young adults who have not responded to standard cancer treatments. The results to date have been extraordinary. We hope to one day fund the research that provides a cure.

So clean out your closets California and Dunk Your Kicks at the San Luis Obispo Marathon on April 25th through the 27th! Take a stand against pediatric cancer, one “Dunk” at a time.

San Luis Obispo Marathon

13-Year-Old Raises $1,200 for Pediatric Cancer in Liu of Birthday Gifts

Pediatric Cancer Kids Helping KidsCharitable giving and philanthropy is a difficult concept to teach children and young adults. Face it, learning to share is a difficult milestone to reach, but giving one’s time and money to benefit others they don’t know, is in fact a hard concept to grasp, especially at a young age. However, one young girl in California clearly understands the good that can come out of personal sacrifice for others.

Rosie just celebrated her 13th birthday. The 13th birthday is special for young girls. It is the year where most girls are unwrapping make-up and new clothes and preparing for their first year as a teenager. Instead, Rosie was unwrapping donations and gift cards for The Max Cure Foundation.  In total, Rosie collected $600 in gift cards and donations which her family matched, bringing the final total to $1,200.

Max Cure often receives requests from parents wanting to get their children involved in our Dunk Your Kicks campaign, where they collect used sneakers on behalf of the Foundation. The sneakers are then sold as affordable footwear in developing nations, with a percentage of the proceeds going to financially support low-income and military families who have a child battling pediatric cancer. These families are part of the Roar Beyond Barriers program. Yet, Rosie’s independent actions show that when given the opportunity to be inspired, children and young adults can do amazing things.

From all of us at The Max Cure Foundation, we believe that both Rosie and her family are an inspiration to others. We hope the story Rosie’s selfless act reaches the newsfeeds of others who read this blog, and who are motivated to take action for a cause near to their hearts. We know that Rosie received more joy this year on her birthday because of the good that she did than any mountain of gifts could have provided.

If you would like to learn more about how your child or family can support the Max Cure Foundation please feel free to contact us here, or fill out the form on this page to bring Dunk Your Kicks to your community or business.

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.

Match a Dunk

Can You Hear Our Roar?

Pediatric cancer does not discriminate. It doesn’t matter if you are a Wall Street tycoon or a single parent living in the inner city, the disease devastates families, not only emotionally, but financially as well. The Roar Beyond Barriers program extends support to families in need so they may provide higher quality of care for their children at home.  Typically, the medical and health care needs are provided through insurance, Medicaid or unreimbursed medical care through the treating hospital. Hence, these expenses are not part of the Roar Beyond Barriers program.

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The Roar Beyond Barriers program has provided support to 73 families since its inception in 2011 and provided over $150,000 in financial support since that time. We currently have families in 12 states from coast to coast including, Arizona (Phoenix),  California (Oakland), Connecticut (Hartford), Florida (Jacksonville, Orlando and Pensacola), Louisiana (Shreveport), Maryland (Baltimore), Minnesota (Minneapolis), New Jersey (Hackensack and Newark), New York (New York City, Syracuse and on Long Island), Pennsylvania (Philadelphia), Texas (Austin and Houston) and Washington (Seattle).

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Our goal for 2014 is that our Dunk Your Kicks campaign, where we turn your used sneakers into dollars, will fund the Roar Beyond Barriers program. We want to inspire the children to help the children. We want to teach our youths how to become future philanthropists of America, without having to ask for money. The Dunk Your Kicks program is well on its way and we are excited about the year ahead, however these children still need support in the meantime.

Can you hear our Roar? Help us continue to provide for these families. You can even choose which state your tax deductible donations will support if it includes one of the States identified above – otherwise the funds can go towards the program generally to assist the families. A little bit goes a long way.   

shauna-testimonial

The Real Faces of Pediatric Cancer

Childhood Cancer

Alex Rodriguez Removed from Animated Film Dealing with Pediatric Cancer

Not only has Alex Rodriguez been banned from playing baseball in 2014, but his character was also removed from the animated movie, Henry & Me, to be premiered in New York City in June, 2014.  The film was to premier in September, 2013, but due to the issues surrounding A – Rod, the New York Yankees and Major League Baseball, the producers of the film, of which David Plotkin, Chairman of The Max Cure Foundation, is a co-producer, decided to cancel the September launch of the movie, to remove Rodriguez as one of the central characters in the film and to replace him with former Yankee, Hideki Matsui.  The animated film is based on the book, “Boy of Steel”, written by Ray Negron, an executive with the New York Yankees and an avid writer who emphasizes in his writings his love of children and his sincere desire to make a difference.

Henry and MeThe story line is based on young Jack’s diagnosis of cancer and how he faces the many obstacles confronting him as he attempts to defeat cancer with the help of the New York Yankees.  Jack, an avid Yankee fan, faces the horrific disease with hope and courage, having been encouraged by Yankee legends Babe Ruth, Lefty Gomez, Mickey Mantle, Thurman Munson, Yogi Berra, Reggie Jackson and others and by many current players who either now wear or had worn the Yankee uniform, including as noted Hideki Matsui who continues to be idolized not only for what he did while a Yankee but also in Japan for his accomplishments as a player for the Japanese team known as the Yomiuri Giants. In addition to players, also depicted in the film are George Steinbrenner, Joe Girardi, Michael Kay and Brian Cashman . The cast includes the voice overs of Richard Gere as Henry, Luis Guzman as Lefty Gomez, Chazz Palminteri as Babe Ruth, Danny Aiello as Dr. Acosta, Cindy Lauper as Nurse Cyndi, Lucie Arnaz as Jacks Mom, Paul Simon as Thurmon Munson, Austin Williams as Jack and Serena Girardi as Jack’s friend. 

The producer of the film, Joe Avallone of Reveal 42, Inc., formerly Creative Group Acquisition, Inc., had been introduced to The Max Cure Foundation and David Plotkin in 2011 by John Franco, the former New York Mets pitcher who was inducted into the Mets Hall of Fame in 2012.  John, a supporter of The Max Cure Foundation, is a member of its Circle of Ambassadors and told the producer how the story of young Max Plotkin and his battle with cancer was aligned with that of Jack, the youngster in the film battling cancer.  That led to Joe Avallone meeting with David Plotkin and learning that like Jack in the film, Max’s first symptoms of the disease resulted from playing baseball with his father outside his home.  As with Jack, Max bravely confronted the hurdles he had to overcome during the treatments to defeat the disease and happily, both Jack and Max are childhood cancer survivors, giving hope to those children who are afflicted with the disease and to their families.

It is anticipated that following the release of the movie in mid-June, 2014, there will be sales of the DVD. Such sales are expected to benefit various charities, most of which were identified by the actors in the film and by those whose images are portrayed in the movie.  Included in the charities to benefit from the sale and distribution of the DVD’s will be The Max Cure Foundation.  Stay tuned for more information as the release date approaches. It is anticipated that both David Plotkin and Max, together with the Yankees and the actors identified above, will be involved in promoting the film.  Indeed, Max was described by those involved with the film as “being the real life Jack.”   The movie is not only expected to be widely accepted by baseball fans, especially those of the New York Yankees, but also by the public generally, including those interested in childhood cancer issues, as they are moved by the bravery exhibited by Jack during his successful battle to overcome pediatric cancer.

“Creating Hope” For Pediatric Cancer Causes

On September 2011, Max Plotkin, age 8, a cancer survivor was invited by Congressman Michael McCaul, to address the Congressional Caucus on Pediatric Cancer symposium on Capitol Hill. In attendance were over 500 legislators, scientists, pediatric cancer advocates and foundations, industry representatives and others. The purpose for the Caucus was devoted to educating those in attendance about the then prospective Creating Hope Act. Young Max’s story inspired the audience so much he received a standing ovation.

max at caucus speaking with logoThrough the efforts of those in the Caucus, including Max Cure Vice Chairman, Richard Plotkin, who was identified by Congressman McCaul as one of those in the forefront of obtaining Congressional support for Creating Hope Act, President Obama signed Creating Hope Act into law in July, 2012.  Nancy Goodman of Kids v. Cancer Foundation, Inc., a non-profit corporation, not only played a significant role in the drafting of the legislation but also was instrumental in the efforts to pass Creating Hope Act.  Nancy’s involvement in pediatric cancer causes followed the diagnosis of her son, Jacob, with cancer that led to his untimely death on January 16, 2009, at the age of 10.

The Creating Hope Act is intended to create market incentives for drug development for children with cancer and other rare children’s diseases, most of which are life threatening.  Its passage was a pivotal moment in pediatric cancer drug development. The Creating Hope Act is needed due to the lack of effort by pharmaceutical companies to devote resources to drugs to treat pediatric cancers given the limited population of children diagnosed with this horrific disease.

13,500 children annually in the United States are diagnosed with more than 16 different forms of cancers, each of which requires different treatments. Children that survive are generally those that can be treated with drugs developed for adult cancers and “tweaked” to allow their use in children. According to Goodman:

“The challenges of pediatric cancer research are considerable. In the past 20 years, the FDA has initially approved only two drugs for pediatric cancer research. Moreover, while there are almost 900 drugs in the adult cancer pipeline, there have been, to date, almost no drugs in the pediatric cancer pipeline.”

Creating Hope ActThe Creating Hope Act was enacted into law with the hope that it would incentivize pharmaceutical companies to invest funds in developing drugs for children with cancer.  If they were successful in doing so, they would receive a voucher from the FDA that would allow them to receive preferential treatment in connection with the development of other drugs – use of a voucher would expedite the review process at the FDA which could be worth tens, if not hundreds, of millions of dollars to the holder of the voucher.

Nancy Goodman, having been the main proponent of the passage of the Creating Hope Act, did not stop there.  Once the act was passed, Nancy took the lead in seeking to get industry involved in taking advantage of the benefits that would accrue if a company were to develop a drug for pediatric cancers.

“I want to thank you for all your support for Kids v Cancer and for pediatric drug development. It has been a very exciting and successful time for us, and I appreciate all that you do to make it possible. Parenting Ben and Sarah and building Kids v Cancer have been wonderful ways for me to respond to Jacob’s death.” Nancy stated in a recent email.

The Creating Hope Act is already making a difference by accelerating pediatric cancer drug development. According to Goodman:

Drug companies and pediatric oncology researcher are beginning to file applications for Creating Hope Act designations, the initial step leading potentially to vouchers for their drugs. Designations are early signals that should the drugs be approved by the FDA, they would receive a Creating Hope Act voucher. The FDA is beginning to review and authorize Creating Hope Act designations and is preparing draft guidance on the Creating Hope Act. We are talking to investment bankers about making a market in Creating Hope Act vouchers to optimize the vouchers’ transferability. The pediatric cancer community in Europe is now advocating for a version of the Creating Hope Act to be implemented under European Union law.

The Max Cure Foundation is proud and honored to be affiliated with Nancy, Kids v Cancer, and all of the advocates supporting the advancement of pediatric cancer drug development. We will continue to update our readers as to new progressions for the cause but in the meantime, take a moment to follow us on Facebook, or click here to learn more about Kids v Cancer.  

cure pediatric cancer

Max Cure Friend Brightens Smiles on Christmas

Pediatric cancerRichard Plotkin, Vice Chairman of The Max Cure Foundation (MCF) visited one of the Roar Beyond Barriers, NYC, families during the holidays at their new home on Staten Island.  The Christmas tree was decorated with festive and religious ornaments, signaling the joy and serenity of this holiday season and the hope along with the anticipated prosperity for the year ahead.  Grace, age 9, had made the paper snowflake hanging from the ceiling over the tree. Her proud parents were all smiles as MCF brought gifts donated by a friend (who has requested to remain anonymous) of Max Cure Foundation for Grace and Nikki, her 8 year-old sister.

american girl dollThe presents, which were placed under the tree, included two gift certificates to American Girl Doll’s Manhattan store to allow Grace and Nikki to purchase two American Girl dolls, and outfits. The friend of MCF facilitated for Grace and Nikki the dream of many young girls to take their American Girl dolls to the retail store for the experience of a lifetime. Grace is anxious to be the “make – believe mother” of her special doll, who she will proudly name when she gets to the store, looking into her doll’s eyes with the love and emotion she will hopefully someday experience as a “real life” mother.

Nikki on the other hand will not be able to look into her doll’s eyes with the same expectations and hope. Nikki is blind and she has brain cancer. Indeed, no one knows what the year ahead will bring for Nikki or if she will ever experience the joy of motherhood that awaits Grace. Nikki for years has been battling this horrific disease that robbed her of her sight and continues to take her childhood, and potentially her future. Since May, 2012, this family has been part of the Max Cure Foundation Roar Beyond Barriers program in New York City which financially assists low income families battling childhood cancers.

The friend of MCF heard of the family’s situation and wanted to give the girls special Christmas gifts.  The family has received and continues to receive gift cards each month from MCF to be used at a local Target Store to purchase food and other necessities. The New York City program assists families being treated at NYU Cancer Institute, NYU Langone Medical Center, and Memorial Sloan-Kettering Cancer Center.  This program in New York City is supported by PNC Foundation with annual grants of $25,000, having been given to MCF since the launch of the program in 2011.  The Roar Beyond Barriers program currently assists over 40 low income and military families from around the country who are battling cancer in their children, with over 15 additional families having been part of the program since its inception. Of the 15 children in the latter families they have either gone into remission or passed away. 

Until last year, Grace and Nikki’s family lived in a basement apartment on Staten Island. Nikki, who is wheelchair bound had a very difficult time. Hence, they were forced to move into an apartment with wheelchair access.  Having a hard time finding a suitable apartment that would accommodate a wheelchair, this family called upon The Max Cure Foundation for advice and guidance.  Max Cure Foundation made a phone call to a prospective landlord, who, following that call entered into a lease with the family for their current apartment. When asked in an interview about what MCF means to them, the father replied, “We cannot thank MCF enough for everything they have done for us! The money I make goes towards bills. It is hard and so frustrating. We just barely make ends meet. I get paid bi-weekly, so that is extremely hard.  Again, thank you so much for everything.”

After visiting with the family over the holidays, Richard stated “I can truly say that my visit this past weekend with Nikki, Grace and their parents underscored for me the truism – It is better to give than to receive.”

Match a DunkThe Roar Beyond Barriers program has done remarkable things for these families and will continue to do so with your help! Donate today by “Matching a Dunk” online or you can mail your donation to:

The Max Cure Foundation
1350 Avenue of the Americas
2nd. Floor
New York, NY 10019

#DunkYourKicks and #RoarForACure

Pediatric Cancer | Significant Cycles or Stages

There are four significant cycles or stages in childhood cancer. The four cycles are: Healthy with no sign of cancer, Cancer Diagnosis and Treatment, then Survival, and back to Healthy. Notice that I did not use the term “cured.” “Cured” is not a term that is used much in the childhood cancer community.

max after treatmentEvery day, 36 children like Max (of Max Cure) randomly fall into the battle with cancer. For the most part, childhood cancer, unlike some adult cancers, is not preventable. No one has actually found the cause.  Many people chalk it up to a cell division lotto where a single cell divides incorrectly during the normal process of cell division that takes place millions and millions of times in a child every day. The National Cancer Institute (NCI) explains it this way, “Environmental causes of childhood cancer have long been suspected by many scientists but have been difficult to pin down, partly because cancer in children is rare and because it is difficult to identify past exposure levels in children, particularly during potentially important periods such as pregnancy or even prior to conception. In addition, each of the distinctive types of childhood cancers develops differently—with a potentially wide variety of causes and a unique clinical course in terms of age, race, gender, and many other factors.”

For each child diagnosed, all energies, efforts, and treatments are focused on beating the cancer and having that child survive. Let’s examine survival and what happens when a child is successful in fighting cancer.

Pediatric Cancer SurvivorshipWhen it comes to childhood cancer, and the treatment process, the truth is that not everyone gets to go home, most that do survive will never be completely healthy, and before it’s over, many families will suffer tremendous financial hardships. The average hospital bill for children with cancer is approximately $40,000 per day for each day of hospital confinement.

For the purposes of this conversation, let’s follow into the future an average group of 36 kids, ages 5 days old to 15 years, who were diagnosed today.  Thirty-six kids in the United States are diagnosed each and every day of the year. Using known statistics, we can look into their future for the next thirty years of their lives.

pediatric leukemiaTwelve to fourteen, one third of our 36 kids may be trying to survive a form of blood cancer. Leukemia is the one most people know about. The most common type of leukemia in children is acute lymphoblastic leukemia(ALL).  This type has the highest survival rate of about 90%. NCI defines it as, “an aggressive (fast-growing) type of leukemia (blood cancer) in which too many lymphoblasts (immature white blood cells) are found in the blood and bone marrow.” Lymphomas are another type of blood cancer. This type of blood cancer actually forms a tumor.  The most common is intermediate (aggressive) and high-grade lymphomas.  While they are fast growing, they respond the best to intensive chemotherapy.

Six to eight of our study group may have brain tumors.  The most common solid tumors are brain-tumors such as gliomas and medulloblastomas. Brain tumors are the most difficult to cure. Radiation to a child’s brain can significantly damage cognitive function, or if radiation is given at a very young age, it will limit their ability to read, do basic math, tell time or even talk.  DIPG which kills 99% of its mostly five to nine year old victims, will claim at least one of this group of 36. The average survival is only nine to ten months from diagnosis. Eight to ten children may have other solid tumors known as neuroblastomas  (attached to the nervous system), Wilms tumors (kidney), and sarcomas such as rhabdomyosarcoma (soft tissue, muscle), Ewings sarcoma, and osteosarcoma (bone) which is less common.

Most, if not all, of the 36 kids will receive some type of chemotherapy, radiation therapy, or surgery. You hear people talk about cutting, burning and poisoning our kids in order to try and save them. Parents don’t know what to do. Most feel so guilty using the only known cures available, but continue on in hopes that they will beat the odds.  Advances are being made to develop less toxic treatments to improve the long-term outcomes of children with cancer.  We need to advocate for more funds to be made available to bring fully researched and promising, but underfunded, therapies to clinical trials.  We also need to promote genomic sequencing research for the purpose of developing personalized treatment protocols (precision medicine) and in diagnostics for early detection.  Particularly in these economic times, we need to continue to let our lawmakers know the needs of our children.  Please consider writing your representatives.

A large number of children will require a Bone Marrow Transplant (BMT) and it has its own set of adversities with which survivors will have to live.  One problem with the BMT is that it may cause deafness depending on the age and circumstances of the treatment.  We have no other choice but to follow the best path our oncologist recommends.

What Might Survival Look Like?

survivalchartNow, that we have some idea of the make up of this group and what cancers they will encounter, it’s time to look at their futures.  Keep in mind that this is a daily group of US children we are watching, a new group, similar to this one, appears in hospitals in the US each and every day, 365 days a year. So what will happen to these children?

fivedieFive of our 36 children will die within a few months to within five years of diagnosis.  Some enter the hospital and never return.  They die from the cancer and/or from the treatment itself. Five more will die in 6 to 30 years.  Often, they develop a second type of cancer caused by the treatment they received with the first cancer. Sometimes the same cancer returns, but always with a vengeance.  It is estimated that children in the above two groups (10 to 13 children) lost 67 years of life each, compared to 16 years of life for breast cancer victims which is more publicized and much more highly funded.

sevensurviveSeven of the original 36 children will survive at least 30 years, but will suffer life-threatening or disabling chronic health problems. Heart transplant, cardiac arrest, kidney transplant, and cognitive deficit disorders are just a few of the many serious health problems in this group.

Nine will survive at least 30 years, but will suffer mild or moderate chronic health conditions. Infertility, asthma, immune deficiency disorders, vision problems, memory issues, fatigue, hearing loss, depression, and other moderate health issues will be affecting this group of survivors.

tensurvive1Only ten of the thirty-six will survive at least 30 years and will not suffer chronic health conditions. The average age of this group is only 38. Keep in mind that if a child was two years of age at the time of diagnosis, they would only be thirty two and would still have plenty of time for a chance of major health issues occurring that could be tied to their cancer treatment.

First of all, let me acknowledge that any parent of a child lost to cancer would consider all the rest of the childhood cancer survivors as being lucky compared to their unimaginable loss, and I would have to agree with them.  However, when you consider what each of the survivors goes through over their short lifetimes and the fact that they constantly live in the shadow of cancer’s return and will continue to do so for the rest of their lives, it is much too difficult for the writer to label any of them, or any other child affected by cancer, as being lucky or “cured.”

Author: Joe Baber

Joe is a retired retail executive whose Grandson battled high risk neuroblastoma and is currently a six year survivor. Joe is now an advocate for all children and families battling pediatric cancer in an effort to increase the awareness of cancer in children, adolescents and young adults.

The only way to change this is to find less toxic treatments for our children battling pediatric cancer, and ultimately find a cure for each of the 16 different types of pediatric cancer. Support the research needed to give our children a chance! Donate today!

Max Cure Supports Dr. Oren Becher’s DIPG Research

Oren BecherDuke Cancer Institute published an article in their Fall 2013 publication, written by Dave Hart, entitled “Cracking the Secrets of a Lethal Pediatric Tumor.” The article describes the advancements being made in the area of pediatric cancer.  Richard Plotkin, Vice Chairman of The Max Cure Foundation, does not agree with the overly optimistic views expressed in the article as to the successes of late in the area of pediatric cancer.  But that is not the purpose of this blog – to criticize the author’s discussions of these advances. Our intention is to drive awareness and understanding as to the tribulations we fight each day in the Roar for a Cure as The Max Cure Foundation has helped financially support Dr. Becher’s research advancements.

Although the survivorship rate for children with cancer is about 80% (surviving 5 years from the date of diagnosis), with about 20% dying within the five year period, the article does not state by removing one form of childhood leukemia (there are over 16 different forms of childhood cancers, one of which is leukemia), the survival rate is reduced to 65%.  Nor does the article address that the children that do survive the five years have a 10 times greater mortality rate due to liver and heart disease and to re-occurrence of the cancers, most of whom exhibit side-effects of varying degrees over their lifetimes. We are now learning that the children who do survive are more prone to premature aging according to a recent article in the Wall Street Journal. Further, the article does not address the lack of sufficient funding by the government (NIH AND NCI) for research in the area of drugs for pediatric cancers (less than 4 cents of every dollar of government funding for cancer research goes towards childhood cancer drugs) and the equally insufficient funding by private sources such as the American Cancer Society (3 cents of every dollar invested for research) for such research.

brain-stem-pediatric-lgThe cancer specifically referenced in Hart’s article is called Diffuse Intrinsic Pontine Glioma, more commonly known as DIPG, and has a much different outcome than that described in the article for pediatric cancer generally. DIPG is a tumor located in the pons (middle) of the brain stem. The brain stem is the bottom most portion of the brain, connecting the cerebrum with the spinal cord. The majority of brain stem tumors occur in the pons (middle brain stem), are diffusely infiltrating (they grow amidst the nerves), and therefore are not able to be surgically removed. Glioma is a general name for any tumor that arises from the supportive tissue called glia, which help keep the neurons (“thinking cells”) in place and functioning well. The brain stem contains all of the “wires” converging from the brain to the spinal cord as well as important structures involved in eye movements, face and throat muscle control and sensation.

Source: The American Brain Tumor Association. (PDF).

DIPG is usually diagnosed in children ranging from toddlers to pre-teens and are difficult to treat because the tumors grow around the normal cells in the brain. The unfortunate truth is that DIPG is generally (99.9%) fatal to the 200 to 300 children each year in this country who are diagnosed with this rare form of brain cancer. After reading the article Richard stated:

“When talking to my friends Greg and Jonathan, who lost their children to DIPG, and to my friend Tom, whose grandchild passed away from this form of brain cancer, or to my new friend, Joy, whose nephew is fighting this disease, I dare not “trumpet” the alleged successes of pediatric cancer research as an indication that scientists and industry are doing great things and making great advances in an effort to find cures for childhood cancers generally.  I do, however, every chance I get, highlight the efforts of Oren Becher, MD, of Duke University Medical Center, Division of Pediatric Hematology/Oncology, for his tireless efforts to not only find a cure for DIPG, but also for his willingness to spend countless hours with parents whose children are diagnosed with the disease.”

The Max Cure Foundation is proud of the fact that it has supported the research of Dr. Becher over the last three years by donating over those years the aggregate sum of $42,000.  It hopes to continue to be able to assist Dr. Becher as he leads the charge in this country to find a cure to what is considered to be, for all intents and purposes, an incurable form of cancer striking the most innocent among us, our children.

You can help support our Roar for a Cure by donating to The Max Cure Foundation today! If you want to donate to Dr. Becher’s efforts to find a cure for DIPG, indicate that in your submission to the Foundation. Just follow this link to make a donation online or you can mail a check to:

The Max Cure Foundation
1350 Avenue of the Americas
2nd. Floor
New York, NY 10019

Gabriella Miller Inspires a Movement

Gabriella MillerGabriella Miller was a little girl who made a big impact on the world. Unfortunately it took her death to get people to stop talking, and start taking action. Gabriella was only 9 when she was diagnosed with brain cancer and was told she had a tumor the size of a walnut in her head. Over the next year she went from a normal little girl, to the leader of a movement.

At such a young age, Gabriella’s mission became raising awareness to the fact that less than 4% of all federal cancer research funds go towards pediatric cancer research. Her video and message “Do whatever you want with this, but I have to say it  . . . Talking is B— S—, we need actions!” went viral before she lost her battle to cancer, but it was truly the loss of her life that made a ripple in time.

Shortly after hearing Gabriella’s no-nonsense message, Congressman Harper (a parent of a child with Fragile X Syndrome and Sponsor of the Kids First Research Act) and House of Representatives Majority Leader Eric Cantor (a Co-Sponsor of HR1553 Carolina Pryce Walker Conquer Childhood Cancer Act of 2008) named HR2019 Kids First Research Act after Gabriella.

The Gabriella Miller Kids First Research Act of 2013 would re-designate the Presidential Campaign Election Fund as a 10-Year Pediatric Research Initiative Fund. More than $12 Million per year for 10 years will supplement (not supplant) funds otherwise allocated by NIH for pediatric medical research. The Presidential Campaign Election Fund has not been accessed by a presidential candidate in recent elections.

On December 11, 2013 in a 295-103 vote, The Gabriella Miller Kids First Research Act passed the House and is on its way to the Senate for approval.

HR 2019 votesIn order to enact this Bill into law, it must be passed through the Senate and then signed by the President. Although the battle is far from over, we are happy to say we are at least taking a step in the right direction.

As we learn more we will update our readers, but until then, you can learn more about H.R. 2019 by clicking here.

Local Boxer Steps in the Ring to Help Knockout Pediatric Cancer

Louis LaValle Raises Thousands  for The Max Cure Foundation

Louis LaValle Taking the Fight(NEW YORK) — Louis LaValle fought his first bout on November 14, 2013 and delivered more than just punches. The event raised more than $10,000 that will be donated to The Max Cure Foundation (MCF).  MCF funds the development of less toxic treatments for children battling cancer and provides low-income and military families  battling pediatric cancer emotional and financial support. They seek to inspire children with the disease to confront it with courage and bravery. The boxing match was organized by Haymakers for Hope. Since 2011, Haymakers for Hope has organized competitive boxing events to raise awareness and funds for cancer research.

“I’ve always wanted to box but made excuses….until now,” said LaValle. “This was my first match. I volunteered my time to battle it out in the ring so hopefully one day someone else doesn’t have to.”

The money will go to The Max Cure Fund at Memorial Sloan-Kettering Cancer Center to fund a T- Cell Therapy Lab dedicated to alternative treatments and innovative research for children and young adults battling cancer. MCF has given $845,000 towards this project, which has shown great results in children and young adults battling lymphoma, and leukemia.

“These children are fighting a battle every day,” said Chairman of The Max Cure Foundation, David Plotkin. “We cannot thank Louis enough for selecting us as the charity to benefit from the event.”

For more information on The Max Cure Foundation visit maxcurefoundation.org or find them on Facebook at www.facebook.com/MaxCureFoundation.

Haymakers for Hope is an official 501(c)(3) charity organization that began in the fall of 2009, and was co-founded by Andrew Myerson and Julie Anne Kelly (cancer survivor) during their training for the New York City Golden Gloves.  Since 2011, Haymakers for Hope has organized a competitive boxing event to raise awareness and funds for cancer research.  In less than two years Haymakers for Hope has raised over $1 million dollars (and counting) for various cancer related hospitals and research facilities. Not every fight ends at the bell!

The Max Cure Foundation The Max Cure Foundation (MCF) is a 501(c)(3) public charity dedicated to advancing cures for pediatric cancers, funding the development of less toxic treatments for children, including the funding of an immune cell therapy lab at Memorial Sloan-Kettering Cancer Center dedicated to alternative treatments for children battling the disease. MCF provides low-income and military families who are battling pediatric cancer emotional and financial support, while seeking to inspire children with the disease to confront it with courage and bravery.

Dunk Your Kicks Special Forces Team | The Boudin Family

Boudin Family

Max Cure Foundation met the Boudin family on Twitter when we saw Emma at camp donating her sneakers. The conversation started and the support we have received from this family has been tremendous! Today we pay tribute to the Boudin family for their heroism in taking a stand against pediatric cancer!

“Never a dull moment with The Boudin Family; life in our house is always interesting.” 13 year old daughter Emma, is artsy and creative. She looks at the world with a unique perspective and loves to make people laugh. Emma is a serious vocalist who just had her recording debut in June! Jesse is 12 years old and is a leader and communicator. He enjoys getting to know people. Jesse was born to be a rockstar drummer; his drumsticks are always in hand ready to jam. Together this family embraces living life to the fullest.

The Boudin’s believe in the philosophy “the power of one”… teaching their children that all it takes is one person to make a difference in the world. They talk about importance of philanthropy, random acts of kindness, karma, and giving back to the community. Jen Boudin, the children’s Mother, told Max Cure, “When Emma, learned of the Max Cure Foundation she grabbed a pair of old kicks before she ran off to camp and dunked them!” Through a series of tweets, including a link to Emma and her music and a picture of her “DUNKING HER KICKS,” the Boudin family became Dunk Your Kicks ambassadors! Jen states her immediate feeling about the campaign was, “What a fabulous way for our community to come together!”

bag of kicksDunk Your Kicks, is a concrete, tangible way for our students and families to raise funds with no selling, to save the lives of children, the lives of the sneakers, and some of the life of our planet!  With the children merging back into our lives after sleep-away camp, and back to school shopping around the corner, Jen approached the owners of Tyler Hill Camp, with a positive and productive way to get rid of those muddy, post-camp sneakers, and the sneakers that our children have grown out of. THC jumped on the Max Cure bandwagon…. (thanks Wendy and Andy!)”

Boudin Kids With Logo“We have raised awareness about their program and brought Dunk Your Kicks to many locations like: our camp Tyler Hill, our neighborhood in Melville, and our middle school. For at least 4 weeks we had a bucket full of sneakers on my front porch. I believe we helped collect at least 750 pairs of sneakers. Our Mitzvah, and act of tzedukah, is understanding that giving back, is not a one time deal, it’s a lifetime commitment. Tikkun Olam is a philosophy that represents my household. To repair the world… that is what Tikkun Olam means. Being a Good Jew, really means being a good person. We don’t have to just give to one cause. A random act of kindness, in any form that makes you feel fulfilled, can change someone’s life. When you feel called to action, follow your heart. Many people dedicate themselves to one project, but my family and I feel that in order to repair the world you, it’s important to spread the love wherever it is needed.” – Emma Boudin

Max Cure Foundation Humbled For The Holidays

The Max Cure Foundation is honored to have been  chosen by  EHE International  to be featured in their window display at 10 Rockefeller Center at The Today Show Plaza for the month of December.  We hope that you have a chance to visit the window, which has our very own Lion Max Mascot sitting on his throne. It is just steps away from the Christmas Tree too. There is a highlight reel of past events being played on the screen, so if you attended any of our events over the years, you just may see yourself.  Please stop by,  take a picture and share it with us on Facebook! The picture below is of Kim, a 13-year-old girl who is fighting this battle.

Pediatric Cancer

This December marks The Max Cure Foundation’s 5th year anniversary. We started the foundation in December 2008 for the purpose of advancing cures and treatments for pediatric cancers.  In 2011, we started a program called Roar Beyond Barriers, which lends financial and emotional assistance to low-income and military families who have a child in active treatment.

In June 2007, following my son Max’s diagnosis of cancer, our family formed the Max Cure Fund at Memorial Sloan-Kettering Cancer Center (MSKCC) for the purpose of underwriting  an immune cell therapy laboratory dedicated to treating children and young adults who did not respond to standard chemotherapy and radiation treatments.   In December 2008, the Plotkin family formed the Max Cure Foundation, Inc., a 501(c) (3) non-profit (MCF). MCF is registered in all states that require such registration. The mission of MCF is to advance cures for pediatric cancers, fund the development of less toxic treatments for children, including the continued funding of the immune cell therapy laboratory at MSKCC.  Through its Roar Beyond Barriers program, MCF provides emotional and financial support to both low-income and military families who are battling pediatric cancers, while at the same time inspiring children with the disease to confront it with courage and bravery.

To date, over $1.1 million has been donated to research (the Fund at MSKCC has received $845,000).  As of 6 months ago, of the 78 children and young adults who have been treated at the lab, 65% are either in remission or have shown signs of tumor regression. This new t-cell therapy treatment, which is being spearheaded by Dr. Richard O’Reilly, the Chair of the Department of Pediatrics at MSKCC, has been limited to leukemia and lymphoma patients, but recently has shown signs that it may impact a form of brain cancer affecting children. MSKCC has created a t-cell bank which it shares with other hospitals. In addition, MCF has contributed $150,000 to Dr. Irwin Van Meir, researcher at Emory University in Atlanta seeking to find a cure for Ewing sarcoma (a rare form of cancer striking children and young adults) as part of two $100,000 collaborative grants with The Samuel Waxman Cancer Research Foundation (SWCRF).  MCF has also donated $42,000 to Dr. Oren Becher at Duke University Medical Center seeking to find a cure for what is currently an incurable brain cancer afflicting children (DIPG).  Other donations have likewise been made in the area of research.  It has also committed to contribute $75,000 to the 2013 – 2014 collaborative grant with SWCRF to two scientists (one at Northwestern University and one at University of Tel Aviv) seeking to find a cure for a rare form of leukemia that strikes children, primarily those with Down Syndrome.

MCF currently has 51 families in its Roar Beyond Barriers program (RBB) who are located in 10 different States, including New York, New Jersey and Connecticut.  There were 12 additional families assisted who were part of the program but are no longer involved. Five children passed away and seven completed treatment and are thankfully in remission. These families, when the child is in active treatment for cancer, are given gift cards from Target Stores each month, ranging between $100 and $500 for necessities such as food and clothing.  It is anticipated that 9 families will be added by year-end 2013 from 3 additional states, bringing the total number of families with children in active treatment for cancer in the Roar Beyond Barriers program to 60.  We are assured by the families of children fighting this disease and the leaders at the cancer hospitals in each state that this program is resulting in an improved quality of life for these families.

MCF also offers assistance to families within the RBB program with funeral related expenses if their child passes away from the disease. Of the 63 families in the RBB program, there have been five deaths, the last of which occurred three months ago of a 12-year-old boy from Brooklyn. The family signed contracts on the day the boy died with the funeral home ($2,750) and cemetery ($5,395) totaling $8,145. The family had little money – the mother did not speak English and did not work. The father was disabled and wheelchair bound. There are three other children. MCF was told by the cemetery that if it did not receive a bank check for the full amount, the hearse would be turned away. Through the effort of MCF and its supporters, MCF raised the necessary funds to cover the expenses of the funeral and more, allowing us to give the family extra monies in their time of mourning.

Two years ago, MCF established a program known as Dunk Your Kicks where MCF collects used sneakers from various sources that are ultimately sold to exporters and distributors as part of the Affordable Footwear Market to emerging market countries.  The monies received by MCF relative to the sale of these sneakers allows MCF to contribute to its Roar Beyond Barriers program in the locale where the Dunk Your Kicks event is held.  In addition to benefiting pediatric cancer (through this family assistance initiative), these sneakers are kept out of landfills, the “resting place” annually for upwards of 200 million pair of sneakers.

MCF became an active member of the Congressional Caucus on Pediatric Cancer, which has expanded MCF’s reach and caused it to face, head on, the dramatic needs of pediatric cancers and how it is the most underfunded of all cancers, not only from the Government, but also from private donations. Through the efforts of the Caucus, the Creating Hope Act (the Act) was signed into law by President Obama in July 2012. MCF is proud to have played a significant role in garnering legislative support needed to pass this very important legislation. As to the latter, in addition to an email campaign, we had meetings on Capitol Hill with New Jersey congressmen and with the Chair of the House Energy and Commerce Committee, Fred Upton, whose support was needed to have the Act added as an amendment to a law that was to be renewed by September 30, 2012. At age 8 Max spoke on Capitol Hill in 2011 as a cancer survivor in support of the passage of the Act, receiving a standing ovation from the audience of over 500 persons, consisting of legislators, scientists, heads of pediatric cancer foundations and industry representatives. The Act incentivizes pharmaceutical companies to invest in drugs to cure and/or treat pediatric cancers among other rare childhood diseases.

Today Max is ten years old and is considered a 6 year cancer survivor.  He continues to be monitored by his doctors at MSKCC. We pray that the cancer never comes back, and that the treatment does not cause any long-term side effects. He has many friends and plays basketball, football, and baseball for the town. He has become an avid reader as well.

Although, The Max Cure Foundation is still considered a new organization, we continue to grow and spread our message daily, trying our best to inspire others while  raising awareness for this terrible disease that affects the most innocent among us; our children.  Being given the window in Rockefeller Center for December, is an example of how our Roar is touching the hearts of others, and we are making a difference. We are humbled by this honor.

Please help us continue to Roar For a Cure this holiday season by making a donation to The Max Cure Foundation. You may make a tax-deductible contribution by mailing us a check, payable to The Max Cure Foundation at our new address below, or please visit www.maxcure.org and donate on line.  Thank you and have wonderful holiday season.

Pediatric cancer

Very Truly Yours,

David Plotkin
Chairman/ Co-Founder
The Max Cure Foundation

Arizona Family With Pediatric Cancer Get’s Local Support

Pediatric Cancer

Max Cure’s Erica Bailey spending some quality time with Buddy before his big interview.

The Max Cure Foundation would like to extend a Roaring Thank You to Health2Fit.com for coming out to Phoenix Children’s Hospital today and interviewing our newest Roar Beyond Barriers family! Buddy, his Mother, Delilah, and representatives of both Max Cure and Phoenix Children’s Hospital spent some quality time today sharing Buddy’s story which should air on November 16th at 11:00 on Channel 7.

At first Buddy was unhappy that he was not going to school and had to come to the clinic instead! All it took was a smile, and magically pulling an iPad out of my purse to bring Buddy’s true loving character to the surface. I was welcomed with a hug and smile that could melt anyone’s heart. Buddy is an amazing 5 year old boy with Medulloblastoma, which is a high grade brain tumor. Buddy was diagnosed in December of 2011 when he was only three years old. Despite a surgical resection and a high dose chemotherapy regimen, Buddy’s disease progressed. During his treatment, Buddy spent almost a full year as an inpatient at Phoenix Children’s Hospital. Buddy is supported by his loving single Mother and his 10-year-old sister. He loves Ninja Turtles, Hungry Hungry Hippos, Dora the Explorer and the PBS channel. His favorite thing to do is go to school. He loves learning. Buddy is a kind child with so much love to offer this world!

Pediatric Cancer

Delilah and Buddy during their interview with Health2Fit.com

Delilah’s stories are both heart breaking and inspirational. She shared with us today that every five weeks she has to fight to get her son’s life saving medication paid for by AHCCCS as it is even a battle to get the medications she needs to fight for her son’s life. Delilah also shared with us, that for three months prior to Buddy’s diagnosis, she told the pediatrician there was something wrong with her son. He slept so long she didn’t think he would ever wake up. He was throwing up constantly even though he was not eating, he lost 13 pounds over that time frame. Buddy even lost his ability to walk and his Mother was told not to worry. Finally, when he complained about a headache she rushed him to Phoenix Children’s Hospital and he was in surgery hours later. The two of them spent nearly the next year inpatient, and Buddy literally had to fight for his life.

When Delilah talks about how she never left her son’s side except on the first of the month to pay bills and get groceries, you can see how exhausting this ordeal has been. You can hear the pain in her voice when she talks about the sleepless nights, listening to her son cry in pain, knowing there was nothing she can do. You can also see her strength and ambition to keep her son alive. Her dedication to his healing is apparent in every action she takes. Both Buddy and Delilah are an inspiration and we are fortunate to have met them!

Sneakers are being collected at Fix24 Scottsdale Chiropractic and all Arizona Audio Express locations through November 22nd and we will be announcing another collection location shortly.

Arizona Child with Cancer Gets Support From Max Cure

Pediatric CancerToday, representatives of The Max Cure Foundation had the honor of spending some time with Maurice and his Mother, Amber, at Phoenix Children’s Hospital. Maurice is a 9-year-old boy with Nf1 (a hereditary disease) and a Fibrillary Astrocytoma Brain Tumor.  He was diagnosed in November, 2011 and has been in treatment since that time. Maurice has had two brain surgeries (surgical resection) and 30 treatments of radiation. He is on round two of chemotherapy and He currently comes to clinic twice every month for treatment.

Maurice loves football and his favorite team is the Pittsburgh Steelers. His told us all about playing flag football and how much he loves playing offence, because, and I quote “so we can score!” His face lights up when he talks about football and his PS3, and you can see the true innocence in his eyes which makes his battle so much more difficult to watch.

We talked with Maurice and his Mother, Amber, during his chemotherapy treatment. Amber informed us that Maurice receives two hours of fluids before his two hours of chemo, and then another two hours of fluids. He has to sit there all day, and even though the clinic at Phoenix Children’s Hospital is a beautiful place, there is not much that entertains a 9-year-old boy other than video games and playing outside! When we asked Maurice how he feels after his treatment, you could feel the pain in his silence as he hung his head and shrugged. Anyone could see that Maurice was trying so hard to be strong, but the harsh treatments are excruciating on his little body.

The struggles are far from over for Maurice, Amber and their family but they are strong, and we have no doubt they will continue to fight this disease.

Maurice’s Message

Maurice Invites You to Dunk Your Kicks!