Evelyn Grace Foundation- Research for a Cure

The past few months have been heartbreaking, painful, agonizing, and filled with moments of complete despair. Grief hurts, it physically and emotionally HURTS. Sometimes grief feels bottomless, a dark abyss that has no mercy. So I pray A LOT, I pray for some relief from the sadness and for guidance to make a difference in memory of Evelyn. I get up and face each new day with faith, hope and love- for Evelyn. I know I have to feel my way through it. I know I have to make some sense out of the senseless.

Which leads me to some promising and exciting news.......

I have started the Evelyn Grace Foundation. A non-profit 501(c)3, tax-exempt, charitable organization. Our 501(c)3 non-profit status is currently in progress. Also, the website development has been initiated and I hope to launch the site in February 2010.

Our Mission......

With Faith, Hope & Love our mission is to raise funds and awareness to support families affected by childhood cancer. Our efforts will focus on research for a cure, programs to help children living with cancer and to increase awareness regarding cord blood donation.

Evelyn was a baby yet she fought her disease with miraculous strength until her little body could no longer battle the aggressive leukemia. We will keep her beautiful and courageous spirit alive so that she can help other children and families affected by childhood cancer.

I hope to ultimately help to raise funds for an exciting research project in the development phase at UCLA Mattel Children's Hospital. The chief of the pediatric hematology/oncology division at UCLA has been in touch with me regarding a human genome project.

The Genome Project at UCLA’s Nelson Lab

and the Division of Pediatric Hematology/Oncology at

Mattel Children’s Hospital UCLA

It has been apparent for decades that cancer is generally the result of a spectrum of different DNA mutations that occur in different cell types. Indeed, one of the justifications for the Human Genome Project proposed in 1986 was that the decoding of the first human genome would permit us to understand all the many mutations that occur in cancers. Substantial progress in how sequencing is performed has been made. Through the development of methods that allow many millions of DNA fragments to be sequenced simultaneously (so called ‘next generation sequencing’), the ability to completely decode genomes is now a reality, and will reveal the true complexity of individual cancers.

The landscape of mutations within cancers remains largely unknown, and the cost of cancer sequencing has limited the research community to highly targeted efforts. However, we can now leverage powerful new sequencing technologies to develop complete catalogues and discover all mutations within an individual, which may be much more powerful for seeing coherent patterns of mutation when the entire genome is surveyed. A genome-wide view stands a much better chance of providing a comprehensive understanding of the biological processes disrupted in carcinogenesis, and of identifying novel genomic mutational targets to support more effective and specifically tailored treatments.

The Nelson Lab at UCLA has worked to establish the UCLA Center for Highthroughput Biology with a goal of rapidly sequencing and interpreting individual cancer genomes. This Center includes the capacity to generate the equivalent of 10 human genome sequences every week. With sophisticated imaging systems and high performance computing we can now determine the DNA sequence of genes in a process that takes under a month. By comparing an individual’s normal genome to the genome of their cancer, we can find all mutations that occur in the process of generating a specific cancer. Why and how each cancer developed holds critical clues as to how therapies should be applied.

Infant leukemia accounts for 3% of childhood leukemia and leukemia cutis occurs in approximately 25% of infants with congenital leukemia. Despite the rarity of the disease, the fact that this form of leukemia produces skin lesions indicates that the cells are different from other forms of leukemia and thus may respond to forms of chemotherapy not typically considered for treatment in newborns. We will sequence genes in two bone marrow samples from this little girl and also sequence her normal genomic DNA in order to completely characterize all mutations that occurred in the generation of the leukemia.

UCLA’s Nelson Labs plans to sequence all genes in two of Evelyn’s bone marrow samples and also sequence her normal genomic DNA in order to completely characterize all mutations that occurred in the generation of her leukemia. This will be the initiation of a larger project to comprehensively understand this form of cancer and delineate the cellular components that need to be mutated to lead to the cancer. The identification of the mutated genes will ultimately reveal the mechanism resulting in infant leukemia and lead to new treatment strategies.

It will cost $60,000 to sequence each patient’s DNA, and the more that we can do, the greater the impact this study will have. Checks in support of this project should be made payable to “UC Regents” with a note that they are in support of the Nelson Genome Project.

For questions regarding donations please contact Jennifer Jung, Director of Development, Mattel Children's Hospital UCLA, (310) 267-1832 or jjung@support.ucla.edu.

Also, a postdoctoral fellow from Louisiana State University will be analyzing Evelyn's cells in culture. She will analyze the leukemia cells together with support cells known as stroma cells to study drug resistance. Since Evelyn's leukemia cells were very resistant to chemotherapy this may help explain more about her disease which could lead to further treatment advances as well. I am excited about this because infant leukemia is extremely rare in comparison to other forms of childhood cancer and leukemia in general. As a result, there is very little funding directed towards advancements in treatment protocols or for curing infant leukemia. Infant leukemia is very much a mystery and I want to change that with your help!!

If you would like to support the Evelyn Grace Foundation and the Genome Project at UCLA- You can donate by sending a check to:

C/O Evelyn Grace Foundation
PO Box 463

Seal Beach, CA 90740-0463

God makes a promise~ faith believes it, hope anticipates it. Patience quietly awaits it.

With Love,
Bobbie Doyle