This week, The Joseph Lentz Fund for Pediatric Brain Cancer Research donated $13,000 to the Children's Hospital of Philadelphia's Children's Brain Tissue Consortium Project.  Top doctors and researchers at the Children’s Hospital of Philadelphia have pioneered this project which, simply put, is a tissue bank that intends to catalog both pre and post mortem samples of pediatric brain tumors and further record all relevant data pertaining to their treatment (i.e. successful and unsuccessful treatments used, family wellness information, cancer symptoms, side effects of medications, survival statistics, quality of life, etc.) The premise behind collecting such data is that patterns will eventually be found among the tumors, families, children and information collected leading to more effective treatment courses and, ultimately, a cure and prevention.

Children’s Hospital of Philadelphia has partnered with other reputable children’s hospitals across the United States so that they may coordinate efforts and maximize the type and tumor samples used.  To date, there are over 45 specimens included in the data bank which is working towards the goal of a few hundred.  It is estimated that the study will cost $16 million dollars to complete and, with proper funding, its results hold promise and hope for thousands of families of children with brain tumors and it offers advancements to many other types of cancers.

There are several reasons why 
The Children’s Brain Tissue Consortium is essential to the advancement and unique to the field of pediatric brain tumors.  First, this is the first project of its kind to work towards completion in the United States.  Its premise is simple but its execution is complex and expensive, which is why it has not been completed before now.  Second, it holds promise for the most deadly types of brain tumors, similar to our son’s, because it collects samples from children post mortem.  This is necessary because the ethics of medicine currently bars the biopsy of those tumors that, at present, are considered thoroughly untreatable.  This creates a complicated conundrum because, without a tumor sample, effective treatments cannot be explored.  Currently, children diagnosed with this type of tumor receive an unavoidable death sentence.  Third, it promises to create jobs and more focused areas of expertise for professionals in the field of pediatric cancer.  This year’s $13,000 donation from The Joseph Lentz Fund will fund a clinical research student’s work on the project.  Fourth, patterns and advances in this field of the most deadly children’s cancers offer hope for advancing other types of cancers.  Fifth, pediatric brain tumors affect children and the families of all races, religions, classes and economic backgrounds therefore a cure cannot come fast enough for those now suffering and for those who, like our family did, unsuspectingly face a future diagnosis.

The Joseph Lentz Fund is proud to support this promising endeavor at C.H.O.P. because without a drastic change in funding leading to significant advances in this area of science, a standstill will remain resulting in horrendous suffering by children and their families in the United States and the world.  It is my hope that others will follow in these footsteps and donate to C.H.O.P.’s 
Children’s Brain Tissue Consortium.  Any funding allocated to C.H.O.P. should specify its intention, in this case, to benefit the Children’s Brain Tissue Consortium.  For more information contact Lynn Salvo at C.H.O.P. (SALVOL@email.chop.edu).

For more information about the 
Children’s Brain Tissue Consortium project at C.H.O.P., its purpose and the institutions and hospitals in the country that also support its advancement, go to:

http://www.cbtf.org/news/solve-dire-problem-in-cancer 
 
http://www.cbtf.org/learn/tissue-consortium-faq 
 
http://www.cbtf.org/learn/scientific-background 
 
http://www.cbtf.org/learn/biography-thomas-curran-ph 

This donation from The Joseph Lentz Fund for Pediatric Brain Cancer Research is given in tribute of the following outstanding individuals who, in 2009, went above and beyond their duties to show care and love to my son and my family during his diagnosis, illness and death:

Maura Brown, RN, Oncology, CHOP
Preetha Domingo, RN, Oncology, CHOP
Krista Quinn, RN, Oncology, CHOP
Rosanna Pollack, RN, Neuro-oncology, CHOP
Judy Doell, RN, Neuro-oncology, CHOP
Ellyn Rebecca, RN, Interventional Radiology, CHOP
Steven Altschuler, President, CHOP
Madeline Bell, Executive Vice President, CHOP
David D. Ufberg, MD, Obstetrics, Lankenau Hospital
Dionne Thompson, RN, Compassionate Care Hospice, Bensalem, PA
Michael Fisher, MD, Neuro-Oncology, CHOP
Tammy Kang, MD, Neuro-Oncology and Director of the Palliative Care Team (PACT), CHOP
 
Lastly, this gift is also given in honor of our wonderful little boy, J
oseph Thomas Lentz.
 
My family is grateful to so many people who showed us support during Joseph's illness and death and who have continued to support us in our new lives without Joseph.  We remain especially thankful to the above-referenced individuals who have touched our lives more than they will ever know.

Lastly, this gift would not be possible without Joseph Lentz, whose ability to affect and reach others despite his absence never ceases to amaze me.  This sentiment has taken almost two years to evolve but I finally consider it the ultimate honor to have mothered someone who is nearly impossible to say goodbye to.  He was, and continues to be, the perfect son...

  Thank you, Joe, for inspiring this gift...I am so proud of you for accomplishing 
 more in 2 1/2 years than most people dream of accomplishing in an entire lifetime.


~written by: Jennifer Lentz, President, The Joseph Lentz Fund and Joseph's Mommy