Overcoming Resistance in High Risk Medulloblastoma

William Weiss

A team of international researchers led by William Weiss, MD, PhD at the University of California, San Francisco, has been awarded a $1.88 million grant by CureSearch to investigate their hypothesis that drugs that reprogram (normalize) the epigenome, will block the inappropriate activation or silencing of DNA, thus normalizing gene expression. If this occurs, it will lead to improved outcomes for patients who do not respond to treatment.

Brain tumors are the leading cause of death from cancer in children, and medulloblastoma is the most common type of malignant brain cancer. Patients with high-risk medulloblastoma are particularly resistant to the treatments that currently exist. Researchers have identified mutations (changes) in genes not thought to cause cancer. These genes regulate the “epigenetic state” of the cell, and mutations in them inappropriately lead cells to express genes that should normally be silenced, or silence genes that should normally be expressed. The inappropriate expressing and silencing of these genes in high-risk medulloblastoma may cause the cancer to resist the treatments that are currently available.

A team of international researchers led by William Weiss, MD, PhD at the University of California, San Francisco, has been awarded a $1.88 million grant by CureSearch to investigate their hypothesis that drugs that reprogram (normalize) the epigenome, will block the inappropriate activation or silencing of DNA, thus normalizing gene expression. If this occurs, it will lead to improved outcomes for patients who do not respond to treatment.

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Day in the Life- Jennifer Lee

Jennifer Lee

Jennifer Lee is a Twin Cities CureSearch Walk committee member and Clinical Research Associate at Children’s Hospitals and Clinics of Minnesota. Jennifer works with a team of research staff to help coordinate patient’s clinical trial participation. Jennifer loves knowing that the work she is doing is bringing medical professionals one step closer to a cure.

Q:  What lead you to becoming a Clinical Research Associate (CRA)?

A: I fell into this role by complete accident but have stayed for over 10 years. I had previously worked in another area at Children’s and knew that I had a passion for working in pediatrics. What keeps me in my current position is seeing the good that can come out of a terrible situation.  Pediatric cancer diagnoses are often devastating for patients and their loved ones. Knowing that I am helping to work toward the goal of ending this heartbreak means a lot to me.

Q:  What is an average day like for you at the hospital?

A:  I work in a team of research staff. We coordinate with each other to make sure each patient’s research needs are taken care of and collaborate with physicians, nurse practitioners, nurses, pharmacists, physical therapy staff and many others to ensure that all research study requirements are met. There is a lot of communication that happens to make sure we’re staying on top of everything.

I also get to interact with patients if there is a need to have questionnaires done or if we help nursing staff get specimens to the lab or any other needs. I love getting the chance to see the patients. They always have such a positive attitude and big smiles.

Q:  What is your favorite part of being a CRA?

A:  A lot of people think working in research means working in a lab doing the same thing over and over. My job isn’t like that and I love it. Every day we are presented with new challenges whether it be helping providers figure out what labs need to be drawn and when to obtaining scans from outside hospitals to talking with a patient/family about a questionnaire.  There are always new studies opening and new opportunities to advance our discipline. It’s a really exciting field.

Q:  What lead you to CureSearch?

A:  Our lead research doctor recognizes the important contributions that CureSearch makes to fighting children’s cancer. He is very supportive of our staff and knows that CRAs are detail oriented and very good at organizing so he asked if someone would take it on.  I was passed the role from another CRA and have been the lead coordinator at our site for the past 2 years.

Q:  What is your favorite part about the Walk?

A:  There are many aspects of a patient’s fight with cancer that are not very fun so having the opportunity to see patients outside of the hospital and having fun is really special.

Children’s Cancer Fund Gets Gift from Department of Transportation

A Missouri Department of Transportation project that built new bridges in each of Missouri’s 114 counties and was completed more than a year early and under its $685 million budget has been named one of the nation’s two best projects that were completed in 2012.

The Safe & Sound Bridge Improvement Program yesterday received the People’s Choice Award at the America’s Transportation Awards competition.

Safe & Sound replaced or repaired 802 of the state’s poorest bridges. Work began in 2009 and the final bridge was completed in November last year, two years earlier than MoDOT’s goal, and more than a year ahead of the commitment established by the project’s design-build contractor, KTU Constructors.

This is the second time MoDOT has won in this competition that is now in its sixth year. The reconstruction of I-64 in St. Louis was the winner of the Grand Prize in 2010, which is chosen by a panel of judges. Utah won that award this year for a project that expanded Interstate 15.

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A Novel Epigenetic Strategy to Treat Ewing Sarcoma

Mary Beckerle, PhD
Ralph E. and William T. Main Presidential Professor
CEO and Director, Huntsman Cancer Institute
The University of Utah

A team at Huntsman Cancer Institute that includes Mary Beckerle, PhD, Steve Lessnick, MD, PhD, Sunil Sharma, MD, and Alana Welm, PhD has received a $1.73 million grant from CureSearch to test a novel targeted treatment for Ewing sarcoma that hopefully will disrupt the cancer’s growth and spread.

Ewing sarcoma is the second most common bone cancer in children and is a challenging cancer to treat because it has typically metastasized , or spread, by the time it is diagnosed. Further, once cancer has spread, many patients relapse after their initial chemotherapy and surgery. It is widely known that Ewing sarcoma occurs because of a chromosomal abnormality that causes an atypical protein, known as EWS/FLI, to be present (also called expressed), and that when EWS/FLI is expressed, literally thousands of genes mutate, or change from their normal state.

Now, a team at the University of Utah’s Huntsman Cancer Institute led by Mary Beckerle PhD and including Steve Lessnick MD PhD, Sunil Sharma MD, and Alana Welm PhD has received a $1.73 million grant from CureSearch to test a novel targeted treatment for Ewing sarcoma that hopefully will disrupt the cancer’s growth and spread.

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Patients and Hospital Staff Inspire Others to Be Brave

University of Minnesota Amplatz Children’s Hospital share why they are courageous.

Franklin Templeton Shootout Gears Up For Another Year

This guest blog post by Greg Norman, professional golfer and host of the Franklin Templeton Shootout

Greg NormanThis December, I will be gearing up for the 25th annual Franklin Templeton Shootout! Entering its 13th year at Tiburon Golf Club at The Ritz-Carlton Golf Resort, Naples, the Shootout will once again feature 24 of the world’s best golfers playing on two-man teams in a mixed format of modified alternate shot, better ball, and scramble. As we celebrate our 25th anniversary, we are excited to continue our long standing relationship and support of CureSearch for Children’s Cancer.

CureSearch is especially close to my heart because I believe that every child should be given the chance to live a long and happy life, and maybe even learn to play a little golf. Over the years, we have had some amazing childhood cancer survivors speak at our event and last year was no different as we heard the story of wilms tumor survivor, Mikayla Sweeney. First hand stories such as these, remind each and every one of us just how important these critical fund raising efforts are. These donations help fund innovative research, ensuring new treatments are developed for those affected by children’s cancer.

Thanks to the support of Franklin Templeton Investments, our supporting sponsors, my fellow PGA TOUR professionals, volunteers and the Southwest Florida community, we have been able to raise essential funds for charities who are working hard to ensure a better future. I hope that you will join us for the 2013 Franklin Templeton Shootout, December 11-15 at Tiburon Golf Club at The Ritz-Carlton Resort in Naples, Florida. To learn more visit www.franklintempletonshootout.com.

Meet the Children: Ila Jean Rathbone

Ila Jean Rathbone

Ila Jean was a healthy 18-month-old when she developed a fever and black eye that caused her mother, Jennifer, to bring her to the family doctor. When the doctor noticed that Ila Jean’s belly was distended, he ordered an ultrasound and blood work as a precaution. During the ultrasound, Jennifer noticed that the ultrasound tech looked concerned and seemed to be taking extra pictures. By the time Jennifer returned home from the doctor with Ila Jean, she had a dozen messages urging her to bring Ila Jean to the hospital immediately. There, the family received the heart breaking news that Ila Jean had stage 4 neuroblastoma.

Neuroblastoma can originate in the adrenal gland, neck, chest, abdomen, or pelvis—Ila Jean had developed a tumor in her abdomen, which the doctor had noticed during Ila Jean’s visit. Ila Jean’s neuroblastoma had metastasized to her bone marrow. About half of all neuroblastoma cases have metastasized by the time they are diagnosed. During her first week in the hospital, Ila Jean had surgery and started chemotherapy. After her fifth round of chemotherapy, she had another surgery to remove part of her tumor. At Sloan Kettering, Ila Jean had antibody therapy to help get rid of any lingering neuroblastoma cells. In January of 2008, Ila Jean was officially cancer free.

After treatment, the family resumed life as best they could. However, the fear of relapse hovered in the background. In May of 2011, the Rathbone family received the news they had dreaded: Ila Jean had relapsed. Doctors found another tumor in her abdomen but they were hopeful that the surgery to remove the tumor and more chemotherapy would bring Ila Jean’s disease into remission. In December of that year, the family received more devastating news: Ila Jean’s doctors found that her tumors had spread. Ila Jean bravely endured 27 rounds of low dose chemotherapy and prepared for more surgery. Shortly before scheduling the surgery, doctors noticed that the cancer had continued to spread and recommended an NIH trial for Ila Jean. After several weeks on the trial without improvement, Ila Jean went home with her family to enjoy life as much she could outside of the hospital. After a courageous fight, Ila Jean lost her battle with cancer on April 2.

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