Category: Advocacy

Executive Director Jonathan Agin recently traveled to Seattle, Washington from June 12-14th to attend the annual meeting of the Coalition Against Childhood Cancer, also known as CAC2.  CAC2 began to take shape in 2011 to bring many different stakeholders from the childhood cancer community together to collectively raise awareness, create collaborative efforts among member organizations and reduce duplication.  Max Cure immediately saw the benefit of joining in this endeavor and today stands with close to 100 other childhood cancer related organizations and individual advocates working toward the same fight against childhood cancer.

During the meeting, members interact with some of the world’s top clinicians and researchers, members of the National Cancer Institute, FDA and the pharmaceutical industry to learn about new developments and how our collective work is impacting children with cancer.  Additionally, there are specific meetings of separate interest groups such as research, advocacy and family support to name a few.  Whereas Max Cure’s mission aligns with all of the interest groups, we have been most active with our participation in the research group.  Since 2017 when Jonathan embarked upon reshaping Max Cure’s research direction through a bold and aggressive path, our participation in collaborative groups like the CAC2 research interest group have allowed us to further ensure that Max Cure’s research funding is laser focused.  By helping to shape priorities used for collaboration by member organizations, we gain insight into how best to make research-funding decisions as well as create meaningful partnerships to accelerate results.

As part of Max Cure’s research efforts and participation in CAC2, we recently joined the International Cancer Research Partnership (ICRP).  Through the ICRP, we are better able to determine that our research dollars are not duplicating other projects that are already well funded.

The Max Cure Foundation has always held the belief that through collaboration we can achieve greater results as a community.  We feel strongly that our participation in groups like CAC2 provide the platform for our work to reach more support and create faster results as we continue to fight childhood cancer.

Executive Director Jonathan Agin Provides Public Comment Before the Food and Drug Administration

On June 20, 2018, Executive Director Jonathan Agin provided open public comments before the Food and Drug Administration (FDA) Pediatric Oncology Subcommittee of the Oncologic Drugs Advisory Committee on the issue of the implementation of the RACE for Children Act signed into law in August 2017.   (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.

 

Max Cure’s Executive Director Jonathan Agin is featured in Real Clear Health. “As the Executive Director of the Max Cure Foundation, I am no longer fighting for my daughter and her life.  What I am doing—and what so many of us in the childhood cancer community are doing—is fighting for the lives of all of children suffering.” (more…)

Applying for Benefits for Pediatric Cancer

Introduction by Jonathan Agin, JD, Executive Director

As a childhood cancer nonprofit organization, the Max Cure Foundation (MCF) continually engages in the fight against this complex disease on multiple fronts.  Since MCF’s inception, we have collectively funded over $960,000 for research purposes.  Our team through, Richard Plotkin and Jonathan Agin, have effectively been engaged in working in Washington, DC to advocate for legislative and regulatory change.  And finally, but certainly one of our most important charges, is our family assistance program known as Roar Beyond Barriers (RBB).   (more…)

Jonathan Agin, JD, Executive Director’s Public Comments before the Pediatric Subcommittee of the Oncologic Drugs Advisory Committee (pedODAC) Meeting.


pedODAC with namesOn 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…)

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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)

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