To date, over $1.3 million has been donated to research (the Fund at MSKCC has received $930,000, $285,000 of which was received by the Fund prior to the formation of MCF). In addition, MCF has contributed $150,000 to a scientist 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). It has also donated to a researcher 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.
Family Assistance – Roar Beyond Barriers
Since its formation in 2009, Max Cure Foundation has contributed over $425,000 to families battling cancers in their children and young adults, including in excess of $300,000 through its Roar Beyond Barriers program.
Through the program MCF has, since November 2011, assisted over 100 families in 17 states throughout the U.S. 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 94 families in the RBB program since its inception, there have been ten deaths.
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.