To date, MCF has funded over $1.5 million for childhood cancer research, including donating over $75,000 to the Children’s Joy Fund at MSK and in general over $32,000 to other research at MSK (the Max Cure Fund at MSK has received over $975,000 which included the seed monies that funded the development of T-Cells for therapeutic use laying the basis for the exciting advances tested in several clinical trials). In addition, over $110,000 in matching funds has been contributed to MSK from MCF’s donations. As part of MCF’s research funding outside of MSK, $150,000 was provided for Ewing Sarcoma research at Emory University, as part of two $100,000 collaborative grants from the Samuel Waxman Cancer Research Foundation, as well as a grant of $40,000 provided to a researcher at Duke University studying new treatment options for DIPG, an almost universally fatal pediatric brain tumor. Other funds were donated to various charities over the years to benefit childhood cancer research.
2017 began MCF’s initiative to identify the most aggressive and transformational research efforts, thanks to funding from the Connor Fund (Connor Cures Foundation) and the Elisabeth Brain Cancer Fund along with the support of so many donors. MCF focused on four research pathways in 2017. To advance the treatment of the particularly difficult diagnosis of acute myeloid leukemia (AML), including relapse and refractory disease, MCF funded Kevin Curran, MD at MSK in the sum of $50,000, which sum is included in the $975,000 referenced above, for research into the use of CAR-T cells, specialized immune cell therapy treatment using modified cells that target and eliminate cancer cells, with the ultimate hope of being used against other forms of childhood and adult cancers. This research has its genesis at the same Immune Cell Therapy Lab at MSK that MCF initially provided critical funding as referenced above. Additionally, MCF through the Connor Fund and the RS Reynolds Foundation provided $33,500 to Maro Ohanian, DO, from MD Anderson Cancer Center with collaboration from Greg Aune, MD, himself a childhood cancer survivor from UT Health San Antonio, to conduct research hopefully leading to the launch of a clinical trial studying the harmful effects of heavy metals associated with chemotherapy treatment, environmental exposures and the related success rate of treatments and survivorship. An additional component of these efforts is to study the use of FDA approved chelation therapies to remove toxins from the blood stream in an effort to reduce acute life-long side effects exhibited by childhood cancer survivors. MCF also made a grant of $1,000, made possible through MCF’s Run for the White House Program, to support the creation of a first of its kind osteosarcoma basket trial. Finally, MCF continued to support the fight against DIPG through the creation of the Elisabeth Brain Cancer Fund that allowed MCF to donate $47,500 to international clinical and research efforts, with another $42,500 granted in January 2018.
Since its formation in 2009, Max Cure Foundation has contributed over $575,000 to families battling cancers in their children and young adults, including in excess of $450,000 through its Roar Beyond Barriers program.
Through the program MCF has, since November 2011, assisted over 150 families at countless hospitals in multiple states where children are in active treatment for their cancers. The families are given gift cards from Walmart and Sam’s Club stores each month for necessities such as food and clothing. In addition the Foundation provides back to school supplies for school age children enrolled in our program and their siblings as well as an emergency fund budget used in the event the family experiences a financial emergency such as the inability to pay rent, electricity or vehicle repairs.
MCF works initially with social workers from the various hospitals to identify the families to be included in the program and thereafter, MCF generally deals directly with the families. We are told by the families of children fighting this disease and by the social workers at the cancer hospitals that this program is resulting in an improved quality of life for the families, including the children with cancer.
MCF established a funeral fund (the Angels Fund) to assist families within the Roar Beyond Barriers program to pay for funeral related expenses if their child passes away from the disease. Of the 150 families in the RBB program since its inception, there have been fifteen deaths since 2015.
In September 2015, MCF added to the Roar Beyond Barriers program U.S. Special Forces families whose children are battling cancer to the Roar Beyond Barriers program. The first family was a U.S. active duty Navy SEAL whose 4-year-old daughter was diagnosed with cancer. As a result of its fundraising efforts, MCF raised over $20,000 to help alleviate the financial stresses confronting the family. MCF is privileged to assist a Navy SEAL who risks his life for America and who now, with his wife and daughter, are in their greatest battle to save their daughter’s life.
MCF’s Vice-Chair, Richard Plotkin, has translated the advocacy skills he developed over a 40-year career as a litigation lawyer to assist those advocating for children with cancer. Over the last few years, Richard was credited with being a major factor in the passage in July 2012, of the Creating Hope Act, which incentivizes pharmaceutical companies to invest funds in drugs for rare children’s diseases, including cancer. In early 2014, Richard was told that he was solely responsible for obtaining from the FDA the first ever Compassionate Use Waiver for a combination drug therapy, which included an experimental drug, for a child with cancer. Richard is also on various Advocacy Pediatric Cancer groups relative to his involvement with the Coalition Against Childhood Cancer (CAC2) and otherwise. He was invited in his capacity as an advocate to attend a meeting at the White House on the subject and to participate in teleconferences with representatives from the White House, such communications being to further educate the White House on the needs of children with cancer and their families. See the “Josh Hardy” story for how the efforts to save the life of 7-year old Josh Hardy resulted in Richard’s being given a national stage for his advocacy efforts.
Jonathan Agin, a Washington D.C. attorney, joined the MCF team on January 1, 2015, as Director, External Affairs. MCF received a grant from a Texas family to bring Jonathan on board for 2015 and to assist it in its mission of making a positive contribution in the area of childhood cancers. Jonathan has been a leading advocate for pediatric cancer causes since the death in January, 2011, of his four year old daughter, Alexis, to a rare form of childhood cancer. Jonathan’s advocacy work has encompassed many facets of the fight against childhood cancer. His legislative advocacy has proven effective in the passage of several bills in a climate of congressional stagnation. Along the way, following Alexis’ death, Jonathan began to write and speak on issues impacting the childhood cancer community. Jonathan frequently interacts with members of Congress and their staff, the White House, as well as various regulatory agencies and other cancer foundations in an effort to improve the plight of children with cancer. A frequent contributor to the Huffington Post and as a guest writer in other media outlets, Jonathan has quickly become one of the most trusted voices in the childhood cancer community.