The Max Cure Foundation Blog

Research Update | Because of Daniel

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By June 22, 2017

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.

 

Childhood Cancer, Noah’s Ark and My Daughter

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By September 16, 2016

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

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By August 8, 2016

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…)

pedODAC Meeting – DIPG

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By July 1, 2016

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

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By June 28, 2016

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…)

Youth Football Turns Into Fundraising for Childhood Cancer

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By June 10, 2016

Youth Football Raises Money for Childhood Cancer

On May 21st and 22nd, 2016, The Max Cure Foundation and Casa Grande Union High School joined forces to host the first Cactus Classic Charity Football Tournament.

Thanks to the support of 19 Arizona youth football teams and their families, the tournament raised over $11,000 for the Arizona Roar Beyond Barriers program which provides financial support to four families in need who have a child battling cancer as well as the high school’s athletic program. (more…)

The Cancer Moonshot: Are Our Kids Stepping on the Moon Too?

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By February 8, 2016

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…)

Words of Appreciation

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By February 2, 2016

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…)

Expanded Access Programs 2016

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By January 30, 2016
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…)

Max Cure Foundation’s 2015 Annual Appeal

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By December 23, 2015

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…)

The End of Pediatric Cancer Research as We Know It? A commentary on Mathew Zachary’s piece and the Premature Argument that it is “Mission Accomplished”

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By December 22, 2015

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…)

Progress in Action

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By October 28, 2015

Progress in Action: Max Cure Foundation’s Contributions to the Immune Cell Laboratory at Memorial Sloan-Kettering Cancer Center

As the first Executive Director of the Max Cure Foundation, I set several lofty goals that will take significant time and effort to bring to fruition. In viewing the combined three-pronged mission of MCF, one of my biggest desires was to ensure that the funding MCF has provided to the Immune Cell Laboratory at Memorial Sloan Kettering Cancer Center was indeed money well spent.  (more…)

Jonathan’s First Letter as Executive Director

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By September 17, 2015

On September 1, 2015 I began a new journey in my life. September 1, 2015 marks my first official day as the first Executive Director for the Max Cure Foundation. It is no small coincidence that on the same day, Childhood Cancer Awareness Month began.  (more…)

Ties For a Cure

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By September 8, 2015

Who knew the old adage, “The apple doesn’t fall far from the tree” would relate to fundraising and the Max Cure Foundation???  In this case, the apple is the very talented daughter of one of our board members……

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For Finn With Love – A Roar Beyond Barriers Story

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By August 6, 2015

Tamlyn and Colm were already parents of a beautiful little girl named Eve who was five-years-old when she learned she was going to be a big sister. Tamlyn’s pregnancy was normal, and on March 1, 2014 she gave birth to a beautiful, happy little boy named Finn.  (more…)

Kevin Healy Joins the Max Cure Team

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By August 5, 2015

Meet Kevin Healy – Newest MCF Team Member

The Max Cure Foundation is excited to introduce our newest Program Coordinator, Kevin Healy. He joined the foundation on July 6th and has shown tremendous passion for the cause and we have no doubt that he will be a very valuable asset in the fight against childhood cancer.  (more…)

Beyond Josh Hardy

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By August 5, 2015

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.

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Jonathan Agin Becomes MCF First Executive Director

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By August 5, 2015

The Max Cure Foundation is honored to announce that leading pediatric cancer advocate, Jonathan Eric Agin, JD, has accepted the position of Executive Director as of September 1, 2015. (more…)

President Obama Finally Appoints a Pediatric Oncologist to the National Cancer Advisory Board

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By June 26, 2015

For some time, childhood cancer advocates have been seeking the appointment of a pediatric oncologist to the National Cancer Advisory Board (“NCAB”).  (more…)

Girl Scout Troop Raise $1,050 for Arizona Families

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By April 8, 2015

Over the past year, The Max Cure Foundation has had the honor of working very closely with The Girl Scouts of Southern Arizona, Troop 26 on their Take Action program.  (more…)