Category: Blog
2017 Roar Beyond Barriers Impact Report
In 2017, the Max Cure Foundation was able to disburse $68,290 in financial assistance through the Roar Beyond Barriers Program. This covered a total of 53 families across 11 states, especially in the states of Pennsylvania, New York, and Ohio, the three of which made up 51% of the total population of the program. Of these funds, $1,050 was directly paid to families in emergency situations who requested help from our Emergency Grant Fund, which helps families in critical situations where utility service, rent, or other important bills require payment. (more…)
Max Cure’s Advocacy Efforts Against the Harmful Right to Try Legislation
The Max Cure Foundation’s advocacy efforts round out our three-prong mission and sometimes place members of our executive team at the forefront of the childhood cancer community on certain issues. The pending legislation emotionally labeled as the Right to Try law that has been a string of individual bills introduced in Congress, and already the law in some states, is one such example of how Max Cure’s advocacy efforts are aimed at working to help children with cancer. (more…)
One of the three pillars of Max Cure’s mission is funding research. Since our beginning, when Max was diagnosed in 2007 and fighting for his life, the understanding solidified that there was a need to fund childhood cancer research to create impact and better outcomes for many children diagnosed with cancer. Max, being treated at Memorial Sloan Kettering Cancer Center, was at a research facility that has been and continues to be on the cutting edge of the research endeavor. And thus, even before the Max Cure Foundation gained its nonprofit status, the Max Plotkin Fund at MSKCC was created to support the innovative research conducted in the immune cell laboratory. To date, over $1.3 million dollars has been raised and donated to research efforts by the Max Cure Foundation mainly to MSKCC but also to several other researchers.
It is critical for us to ensure that all of the components of our mission (research, financial support to low income and military families, and advocacy) are appropriately and effectively proceeding. With the coming research award announcements, Max Cure is about to push forward with an aggressive research agenda that is aimed at creating significant change and not just funding without purpose. Executive Director Jonathan Agin’s research vision is to fund aggressive and impactful research that is unique in nature while eliminating duplication of projects that are already funded without the need for more, or that will be funded by other organizations and do not need funding. In the coming days, we will announce two such research projects that we are proud to stand beside and support.
Today we announce the first such research project.
Because of Daniel – Osteosarcoma Clinical Trial
Jonathan first met Theresa Beech approximately one year ago in May of 2016. At the time, her son Daniel was fighting relapsed and metastatic osteosarcoma. Theresa, a satellite systems engineer (aka “rocket scientist”) was analyzing Daniel’s genetic data from his cancer in an effort to identify potential drugs to utilize as she desperately tried to save his life. She successfully found targets within the sequencing data, worked with his doctors to obtain the drugs she identified and ultimately extended Daniel’s life for six months. Along the way, parents of children with osteosarcoma began sending Theresa their child’s sequencing data and Theresa started compiling and analyzing the trends. The results were startling and when she mapped it all out, what she was left with was something that looked stunningly similar to how she creates satellite systems.
Daniel unfortunately died and Theresa’s mission solidified further. She began working with a number of select researchers to create an aggressive clinical trial for children with relapsed and metastatic osteosarcoma. A first of its kind drug trial aimed at grouping kids into different and specific baskets for a specific drug or drug combination based upon the genetic profile and targets expressed in the tumors.
Theresa is working feverishly to unite the osteosarcoma community and raise the funds to initiate this trial. In just a short time, she has already gained IRB (institutional review board) approval for the data analysis and collection that she is doing, a first step towards realizing the goal of providing children with relapsed and metastatic osteosarcoma with true options. The Max Cure Foundation is proud to support this effort as we view it to be aggressive, groundbreaking and aimed squarely at generating data to address a problem (an almost universally fatal prognosis following relapse) in the childhood cancer community that lingers without an end in site.
We support this effort to initiate this clinical trial along with many in the osteosarcoma community and the researchers and clinicians that have teamed up with Theresa in her efforts Because of Daniel. On June 22, 2017, thanks to the supporters from the Run For The White House program, the Max Cure Foundation contributed $1,000 towards her research efforts and hope to be able to continue our support.
For more information, please email Executive Director Jonathan Agin: jonathan@maxcure.org.
Jonathan Agin, JD, Executive Director’s Public Comments before the Pediatric Subcommittee of the Oncologic Drugs Advisory Committee (pedODAC) Meeting.
On June 29, 2016, I was one of five individuals selected to present public comments at the Federal Drug Administration (FDA) pedODAC meeting in a special session dedicated to the pediatric brain tumor that took my daughter’s life, (DIPG). (more…)
Follow the Internet:
Food Stamps Should Be Redeemable Online
As American shopping shifts from the brick-and-mortar stores to online retail, and even groceries have innovated for 21st Century consumers, agencies such as the USDA should reconsider how to best serve their constituents under their WIC and SNAP programs. (more…)
The Max Cure Foundation was formed after the diagnosis of Max, at age 4 with cancer (Max is currently 12 years old, a 9 year childhood cancer survivor). Max Cure Foundation initiated a fundraiser for the family of the active duty U.S. Navy SEAL whose 4 year old daughter was diagnosed with cancer in August, 2015. (more…)
From left to right: Ken Moch (former CEO, Chimerix); Richard Plotkin (Max Cure), Debra Birnkrant (FDA), Brooke Gladstone (NPR, Moderator), Nancy Goodman (KidsvCancer), Meg Tirrell (CNBC)
On October 28, 2015, Richard Plotkin appeared as a panelist at a two-day colloquium at New York Academy of Science sponsored by NYU School of Medicine, NYU Langone Medical Center, and Johnson & Johnson. The subject of the program is identified as, “Pre-Approval Access: Can Compassion, Business, and Medicine Coexist?” (more…)
You are brought into a small room: a doctor, a nurse, a social worker and you. The look on their faces is dire. You can feel the fear building; it is palpable. And then you hear the words I’m sorry, “your child has cancer.” This scenario repeats itself 43 times each day in the United States. In April 2008, my family heard those words about our 2-year-old daughter Alexis. Alexis fought against inoperable and terminal brain cancer for 33 months before passing away in January 2011. Similarly, in May 2007, David and Annemarie Plotkin heard these words about 4-year-old Max. Max now stands as a “poster child” for giving other families hope. (more…)
Author: Jonathan E. Agin, JD – Max Cure Foundation Executive Director
In a recent article written by Mathew Zachary entitled The End of Pediatric Cancer Research as We Know It, published on December 2, 2015, the argument is posed that as a society we overplay the death toll from childhood cancer in the United States and are not focusing on the bigger picture at this point: survivorship issues. Mr. Zachary, a young adult survivor of brain cancer, was diagnosed at age 21, and not in the pediatric age range of 0-19 years. He is the founder of Stupid Cancer. (more…)
As a result of my involvement as one of several members of the Coalition Against Childhood Cancer (CAC2) that played a significant role in saving the life of 7-year old Josh Hardy last March, I am continuing to receive the oft-stated “15 minutes of fame.” (more…)