Friday, October 02, 2009

A Sarcoma Fund

This morning, I was reading a blog entry by a woman whose daughter is a two year Ewing's Sarcoma survivor.
She mentioned that last year, the huge fundraiser "Stand Up to Cancer" brought millions of dollars in for cancer research. Not one penny was given to the cause of Childhood Cancer Research. I was floored, especially since some of the emotional pitches to donate for the cure, featured children. I was then curious to see how many research dollars raised by Hollywood actually went towards rare diseases. Though I have never articulated anything about prognosis for my subtype of Sarcoma, it's dismal and I know it is. Malignant Peripheral Nerve Sheath Tumor is a tumor with no treatment options. Only 100 are diagnosed with this subtype yearly and currently 900 out of the population are struggling with this tumor, the majority are children. The tumor is most commonly found in patients with Neurofibromatosis 1. Whereas I do not have NF, my cousin does. It could be coincidence or it might be indicative of a genetic link. The 5 year prognosis for MPNST in NF1 patients is 25%. The 5 year prognosis for those of use without NF1 is 54%. This is breast cancer awareness month and the halls are painted pink. No one, not one of us, minimizes the vehement nature of breast cancer. My cousin passed away of metastatic breast cancer in the 90's at age 38. But, the difference is funding. The difference is options. The difference is the number of Oncologists knowledgeable enough about this disease. The difference is awareness. MPNST is usually treated with the AIM regimen. If that fails, there is no second line offensive. For the low grade MPNST that I have, there are NO options, none, zip, zero, nada in mainstream medicine that does not fall outside the experimental realm. There are only a handfull of Oncologists nationwide that know anything about MPNST, a tumor that is still a mystery. When I did a search to discover how many funds were allocated by "Stand UP to Cancer" to Sarcoma research, I couldn't find anything. I did find the below article which made me smile and brought me to tears. SOMEONE is putting some focus on this tumor! Thank you MD Anderson! Yes, there are only 100 of us diagnosed yearly. 100 is not the 200K that will be diagnosed with breast cancer but is the life of a woman with breast cancer worth more than the life of a woman with a Sarcoma? Are her children more important, more worthy of growing up with a mother? Are the children diagnosed with MPNST each year, expendable? My hope and prayer is that someday, patients with Sarcoma can share in the same hope and the same success that women with breast cancer have. All cancers may not be the same, but all life is equal. I will add the HOPE fund to my list of great causes to support. I ask my sisters fighting breast cancer to help us spread the word. Sarcoma can occur anywhere and I have known several women with Sarcomas in the breast, uterus, ovaries, vagina and cervix. Together, we all can make a difference for all forms of cancer. Soap box ending.

The Hope Fund for Sarcoma Research, NFCR, Form Team to Solve Mysteries of Rare Cancer

(Bethesda, Md., March 28, 2008) — A rare type of tumor, MPNST (Malignant Peripheral Nerve Sheath Tumor), may soon be giving up its secrets to scientists on two continents who are teaming up to carry out systematic studies to explore its genetic makeup.

The Hope Fund for Sarcoma Research, a donor-advised fund in partnership with the National Foundation for Cancer Research (NFCR), is teaming up with scientists from M.D. Anderson Cancer Center in the United States and from Tianjin Medical University Cancer Institute and Hospital in Tianjin, China, to perform molecular and genetic analyses on Malignant Peripheral Nerve Sheath Tumors (MPNST) tissues to identify disease-related genes, pathways and biomarkers that may lead to novel therapies.

Sarcoma is a rare type of cancer and MPNSTs are a rare subtype of soft tissue sarcoma originating from the connective tissues surrounding the nerves; they account for about 5-10 percent of all soft tissue sarcomas. The tumors readily metastasize, and according to researchers, there are no effective treatments available for the metastatic MPNSTs. “To date, there have been no systematic studies using genome-wide approaches to gain a comprehensive understanding of MPNST. This lack of analysis has hindered the development of therapeutics,” said Marianne Bouldin, a founder of the Hope Fund. “We believe that this collaborative effort will help to create a network for shared resources and new technological advances in understanding MPNST.”

The Bouldins founded the Hope Fund after their daughter, Jennifer, survived the rare cancer which affects only an estimated 900 people in the United States. “There was so little information available to us at that time, and only one standard treatment option for this type of cancer,” says Bouldin. “Our goal is not only to raise awareness of MPNST, but to work with the international scientific communities to develop an effective cure that would offer hope to other patients and their families. The project is the second effort backed by the Hope Fund, which is working to build collaboration among sarcoma researchers, as well as to create synergy between scientific organizations around the world”, Bouldin continued.

The two groups in the US and China that have joined efforts for this project are well-versed in sarcoma research. The M.D. Anderson Cancer Center‘s Sarcoma Center sees 20 percent of all sarcoma patients in the US annually, making it one of the leading research and treatment facilities in the United States. Tianjin Medical University Cancer Institute and Hospital is recognized as the birthplace of Chinese oncology, and the hospital has established a Joint Tissue Banking facility with support from NFCR in 2004, where a multitude of valuable MPNST tumor tissues have been collected and are available for research.

Members of the collaborative team include Anderson’s Dr. Wei Zhang, an NFCR-funded scientist and Director of the Cancer Genomics Core Laboratory, who will be providing innovative genomic technologies to the program, along with Dr. Jon Trent, a sarcoma oncologist, Dr. Dina Lev, a Hope Fund-supported sarcoma investigator, and Dr. Raphael Pollock, Director of the Sarcoma Center.

Other critical investigators in the team include surgeon Dr. Kelly Hunt, sarcoma pathologist Dr. Alex Lazar, and sarcoma oncologist Dr. Robert Benjamin.

In China, the team will be headed by Tianjin Cancer Hospital’s surgeon Dr. Jilong Yang; Dr. Kexin Chen, Chairman of the hospital’s Department of Epidemiology and Biostatistics and Director of the Joint Tissue Banking Facility, which will provide critical support to this project and future projects on sarcoma.

The powerful technologies that this team will bring to the network include whole genome gene expression profiling, array CGH, microRNA profiling, Tissue Microarray, and reverse phase protein lysate arrays.

“Our objective for this discovery research project is to use microarray-based comparative genome hybridization (aCGH) and other cutting-edge technologies to perform a systematic study of a relatively large number of MPNST samples,” said Dr. Wei Zhang. “We anticipate that these analyses will reveal major genetic and molecular signatures for MPNST, thus providing an important understanding of not only the cause but also of potential therapeutic targets for this disease. Candidate genes will be sequenced to identify mutations for comparison with information from a relevant database connected with the NCI (National Cancer Institute). This study will contribute valuable information for future research into the cause and therapy of MPNST.”

About the Hope Fund for Sarcoma Research

The Hope Fund for Sarcoma Research is dedicated to supporting research on Soft Tissue Sarcomas, a group of rare but deadly cancers. The Hope Fund is currently supporting a two-year project led by Dina Lev, M.D., at the M.D. Anderson Cancer Center, as well as a high powered international collaboration led by Wei Zhang, Ph.D., also at the M.D. Anderson Cancer Center. The team of collaborators includes Jonathan Trent, M.D., Ph.D. and Raphael Pollock, M.D., Ph.D., Director of the Sarcoma Center, at the M.D. Anderson Cancer Center, as well as Jilong Yang, M.D., and Kexin Chen, M.D., Ph.D., Director of the Joint Tissue Banking Facility at the Tianjin Cancer Institute and Hospital. These projects focus on molecular and genetic analyses and identification of new biomarkers in Soft Tissue Sarcomas, in particular Malignant Peripheral Nerve Sheath Tumors (MPNST). Progress in these important areas may lead to new and better treatments for MPNST and other Soft Tissue Sarcomas. For more information, contact:

About NFCR

The National Foundation for Cancer Research (NFCR) was founded in 1973 to support cancer research and public education relating to earlier prevention, better diagnosis, new and more effective treatments, and ultimately cures for all types of cancer. NFCR promotes and facilitates collaboration among scientists to accelerate the pace of discovery from bench to bedside.

To date, NFCR has provided over $250 million in support of discovery-oriented basic research focused on understanding how and why cells become cancerous and on cancer prevention. NFCR’s scientists are unraveling cancer’s molecular mysteries and translating these discoveries into therapies that hold great promise for curing cancer. NFCR is about Research for a Cure—cures for all types of cancer. For more information, visit or call (800) 321-CURE.

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Media Contact
Silas Deane
National Foundation for Cancer Research
Phone: 301.961.9105


Sylvia said...

Thank God. It's about time MPNST research was funded. A better understanding of the signalling pathways involved in this tragic cancer will help us better judge which oncological treatment regiments might be of use. I applaud everyone involved in this effort.

Erin said...

Maura's oncologist is on that team--Dr. Benjamin. He is fantastic. And we met Dr. Trent a couple of times when he was on call on the weekend in the hospital. The sarcoma team at MDA has so much collective knowledge, it really does inspire hope.

Erin said...

Thank you so much for posting this! I work at the National Foundation for Cancer Research (NFCR) and am so proud of what the Bouldins and MD Anderson have accomplished. We have another paper coming out soon with some exciting new data ... keep checking the websites, and, for more info coming soon!