As I look back on 2014, the 6th full year of operations since Max Cure Foundation (MCF) was formed in December, 2008, I am excited for its future and accomplishing my family’s dream in honor of my grandson, Max, a childhood cancer survivor, of making a significant and positive difference for children with cancer and their families. At the same time, though, I question how to overcome what one person knowledgeable about pediatric cancer and other non-profit foundations recently told us, namely, “The Max Cure Foundation and what it is doing for kids with cancer is the countries best kept secret.”
How could that be with 45,000 Facebook Friends and with an active social media campaign and skilled public relations firm? What this tells me is that in 2015 we must do a better job of promoting ourselves – of distinguishing MCF from other non-profit corporations, of getting the word out as to all the good we are doing, and want to continue to do, for the most innocent and vulnerable among us – children with cancer. In short, we must improve our fundraising skills and do a better job of convincing potential donors that we deserve and warrant their financial support.
Having said that, now let me look back on 2014 with pride as to what MCF has accomplished generally and what I, as its Vice Chairman, personally accomplished during the year. Our Board of Directors formally added to our mission of funding research and family assistance, the mission of advocacy. This is based in part on my efforts over the last few years, both before Congress in seeking support for pediatric cancer legislation (reference is made to my efforts in gaining support for the Creating Hope Act signed into law by President Obama in July, 2012) and in the public domain in the area of getting access to experimental and unapproved drugs for children who are terminally or seriously ill in those instances where these children do not respond to standard approved treatments.
As to the latter, MCF was credited in early 2014 with obtaining from the FDA the first ever compassionate use waiver for a combination drug therapy for children with cancer. Later in the year, as part of the Coalition Against Childhood Cancer (CAC2), of which MCF is a member, I was designated to take the lead in the effort to obtain for Josh Hardy an experimental drug manufactured by Chimerix, a small biotech firm in North Carolina. Chimerix denied 300 prior requests for this experimental drug but through our efforts, including that of Erica Bailey, our Marketing Director, in the area of social media, and those efforts of others, Josh was given the drug that all agree saved his life. He was expected to die by the weekend of March 15th, was given the first dose of the drug on March 12th and is well on his way to recovery and living a long and healthy life. As a result of MCF’s efforts on the Josh Hardy matter, I was designated as the pediatric cancer advocate on a national Working Group established at NYU Langone Medical Center to analyze the current practice of granting compassionate use waivers by the FDA to allow terminally and seriously ill patients who do not respond to approved treatments to be treated with experimental and unapproved drugs. The purpose of this Working Group is to determine, among other things, if the current system is fair.
The Harvard Center on Bioethics invited me to appear on a panel in February, 2015, to address the ethical issues arising out of favoring one patient over others in the issuance of compassionate use waivers by the FDA (based on Josh Hardy having been given the experimental drug following an unprecedented media campaign after 300 prior requests for the drug were denied). Based on MCF’s efforts in the area of compassionate use, I was asked to head a committee of childhood cancer advocates looking into that issue. I was also consulted by a Congressman who had submitted a Bill in the House of Representatives in November that sought to improve the manner in which compassionate use waivers are issued by the FDA. I look forward to MCF continuing its efforts in 2015 in the area of advocacy – and raising awareness of the substantial needs for children with cancer and their families.
2014 also saw the formation of Grandparents In Action (GIA) – formed by MCF with another childhood cancer foundation, The Nicholas Conor Institute, to recognize “the forgotten few”, grandparents of children with cancer. Grandparents not only are directly affected by their grandchildren having cancer, but also by the stress and anguish experienced by their children, the parents of the kids with cancer. Although in operation for less than one year, GIA has already gained a substantial following of grandparents of children with cancer – those that have died, those that are still in treatment, and those that have survived. Furthermore, MCF has taken the lead with the Nicholas Conor Institute in compiling accurate and consistent statistics regarding pediatric cancers in the United States – in order to be taken seriously, it was determined that the population of childhood cancer foundations be consistent in their statistics published to the public – they must be consistent in their pleas to the public to take notice of the dire needs of children with cancer. The latter work by MCF included going public with accurate and consistent information regarding the adverse impact on 98% of the children who survive five years from diagnosis of their disease.
Also, for the second straight year, MCF was selected as the children’s foundation to be given the use in December, without charge, of a display window at Rockefeller Center, in the area of the Rockefeller Center Christmas Tree, located in the vicinity of The Today Show plaza, to display itself to the 2.0 million visitors that visit Rockefeller Center during December. Furthermore, MCF was privileged to be highlighted in February on The Today Show in a 4 minute segment hosted by Al Roker, Willie Geise and Natalie Morales.
In 2014, we welcomed our relationship with a new recycler in MCF’s Dunk Your Kicks program. Used sneakers are collected as part of this campaign by a company that donates monies to MCF based on the number of sneakers collected for its mission in the areas of family assistance (its Roar Beyond Barriers program) and of research (funding an Immune Cell Therapy Lab at Memorial Sloan-Kettering Cancer Center). With monies donated in 2014 from the Dunk Your Kicks program and from general fundraising, the aggregate donations to the Immune Cell Therapy Lab passed the sum of $870,000. In addition, with the low income and military families added to the Roar Beyond Barriers program in 2014, MCF has benefitted over 80 families in 12 States at 21 hospitals during the program instituted in November, 2011. From its inception in December, 2008, including the donations to the Roar Beyond Barriers program, MCF has contributed over $300,000 to the family assistance program. Furthermore, it has contributed over the years over $250,000 to other causes that allow MCF to advance its mission to make a difference in the area of childhood cancers. Moreover, the principal in Blakley Green Corp., the manufacturer of environmentally friendly household products, saw The Today Show segment referenced above and provides each of the families in the Roar Beyond Barriers program with an assortment of such products on an as needed basis.
MCF looks forward to 2015 as it moves its offices from New York City, where it has been since 2009, to new office space in Englewood Cliffs, New Jersey. That move allows it to increase its office space and at the same time, reduce its rental costs.
We would be remiss if we did not take this opportunity to thank those who supported MCF in 2014 and earlier years. Such support enabled MCF to gain visibility in the area of non-profit corporations. After I made a presentation at the initial meeting of the NYU Working Group described above – I was asked to start the meeting off by explaining what MCF did for Josh Hardy. Following that presentation, one of the other patient advocates representing a different disease group commented, “That is all well and good, but it must be recognized we are not all as large and powerful as the Max Cure Foundation.” I smiled!