Tag: Childhood Cancer

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.


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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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…)

Zaiden and his Dad handing out medals to first and second place champions.

Zaiden and his Mom with the 12U championship game ball.

San Tan Warriors half-time pep-talk.

Melissa Goodsell giving the 8U Voodoo their championship trophy.

8U Voodoo vs. 8U Knights

8U Voodoo vs. 8U Elite

Team Zaiden volunteered all weekend long.

Former Denver Bronco, Randy Robbins, helping out with registration.

Piranha-Man cheering on his team.

14U Piranha

AZ Knights 12U vs. San Tan Warriors 12U

Maricopa Heat 12U honoring Zaiden before the championship game.

AZ Knights 12U vs. Maricopa Heat 12U

12U champions the Glendale Pirates honoring Zaiden as an official Pirate.

8U Voodoo vs. 8U Elite

14U Kingman Fusion with their coaches.

Kingman Fusion 14U vs. Da Bears 14U in the championship.

Kingman Fusion 14U vs. Da Bears 14U in the championship.

Kingman Fusion receiving their 2nd place medals from Zaiden.

Maricopa D1 10U vs The Saints 10U in the championship.

Casa Grande Elite 8U coaches.

Da Bears 14U receiving their medals from Zaiden and his Dad.

Da Bears 14U champions honoring Zaiden as one of their own.

Da Bears 14U coach and Melissa Goodsell.

AZ Knights making some adjustments.

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…)

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…)

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…)

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…)

The Max Cure Foundation has been invited to attend the Summer’s Best Office Party and we would like to extend that invitation to you!  (more…)

The Max Cure Foundation recently received a request to start a Dunk Your Kicks collection from 10th grader, Leah Glucksman, in Scarsdale, NY.  (more…)