Category: Advocacy

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…)

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…)

kennedy moonshotOn September 12, 1962 President Kennedy delivered his famous “moonshot” speech. Declaring that as a nation, we would focus vast resources to landing a man on the moon and safely bringing that man back to earth.  (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…)

0

On July 22nd and July 23rd 2015, CBI.net held an industry conference in Bethesda, Maryland, identified as “Expanded Access Programs.” In attendance were representatives from the pharmaceutical and biotech industries, health care providers, patient advocates, government personnel [FDA], and Max Cure Foundation’s, Vice Chairman, Richard Plotkin.

 (more…)

New Treatments & Better Drugs for Childhood Cancer

In July, 2012, President Obama signed into law the Creating Hope Act for the purpose of incentivizing pharmaceutical companies, biotech firms and universities in seeking cures for what are known as Rare Children’s Diseases.  Childhood Cancer is considered such a Rare Children’s Disease.   (more…)

0

As a trial lawyer for 40 years until my retirement a few years back to form The Max Cure Foundation, I was involved in thousands of cases – some I won, some I lost and most were settled. 

 (more…)