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Forming a Caring Group to Support Family

CureSearch for Children’s Cancer is pleased to offer a webinar for parents and caregivers of children with cancer. This webinar will be presented by medical professionals specializing in the webinar’s topic. These webinars were made possible by a grant from American Legion Child Welfare Foundation.

Join CureSearch on November 20 at 7:00 pm EST to learn more about forming a caring group to support family. This webinar will help you understand why you might need a little extra help from friends and family during the treatment of your child’s cancer. Using video, slides, and discussion, presenters will share a model developed to organize the help of friends and family, including a step-by-step plan to use the power of a community in a way that best addresses the needs your family while treatment takes place.

Click here to register

Meet the Children: Bekah Freeman

Bekah Freeman

When Bekah was 12 years old, she was diagnosed with osteosarcoma. Though her journey has been long and hard, she has never let cancer get in the way of enjoying life.

After her diagnosis, her family moved to Alabama so that Bekah could receive the best possible treatment and be closer to their extended family. Due to her treatment, Bekah wasn’t able to attend school and was thrust into a world where her only friends were the ones she met at the hospital. Bekah had 13 months of intense chemotherapy which left her with long-term side effects such as hearing loss, short term memory loss, and kidney and heart function concerns that will need to be monitored for the rest of her life. Her treatment required she have her knee replaced, and due to complications with the replacement, Bekah later had her entire leg amputated. Despite all of this, Bekah has never felt limited in what she could accomplish.

The treatment process was very isolating for Bekah. She didn’t meet very many friends in her new town, and those she did meet couldn’t understand what she had been through. She felt that people only though of her as the “cancer girl.” Luckily, she was given the opportunity to attend a cancer camp where she met others with similar experiences to hers. Bekah found solace in her new cancer camp friends, and they helped her come out of her shell and feel comfortable being the bald girl. When Bekah started college, she worked hard to make sure that her friends knew about her past, but that it did not affect how they treated her.

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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.

Read more…

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.

Read more…