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Out & About – A Recap of a Productive Start to 2014

We’ve hit the ground running and so far it’s been a very busy and productive start to 2014 for the National Brain Tumor Society.

In addition to hosting the first Brain Tumor Clinical Trial Endpoints Workshop, announcing our latest major effort in Pediatrics – Project Impact: Driving Discovery to a Cure for Pediatric Brain Tumors – and adding some great expertise to our programs department, our staff has been busy participating, hosting, and planning for important meetings that will help develop collaborations, share knowledge, and accelerate the pace of new treatment development for adult and pediatric brain tumors alike.

Here are some of the other key places you could have spotted National Brain Tumor Society staff over the past few months:

The 10th Annual Mid-Winter Brain Tumor SPORE Workshop

A number of our staff attended the annual winter meeting of the Brain Tumor SPORE in late January. National Brain Tumor Society is a member of the public-private funding partnership that supports this highly collaborative group, and our staff sought to learn the latest from researchers and institutions within this program on how they are sharing resources and information to move innovative research projects toward.

The National Cancer Institute’s (NCI) Specialized Programs of Research Excellence (SPORE) were created to promote collaborative research and to help basic research findings move quickly from the laboratory to the patient. The objective for all SPOREs is to reduce cancer incidence and mortality, and to improve survival and quality of life for cancer patients. SPOREs encourage the advice of patient advocates in SPORE activities.

The Brain Tumor SPORE program was initiated in 2002. In 2013, the four brain SPORE teams (Massachusetts General Hospital, Mayo Clinic, MD Anderson Cancer Center, and UCSF) made significant progress in the development of unique approaches to diagnosis and treatment.

The National Biomarker Development Alliance Launch

We were honored to receive an invitation to attend the launch of a new alliance that will “address the complex and urgent challenges of creating the standards needed to support end-to-end…biomarker development in order to significantly advance precision (personalized) medicine.”

This effort, called the National Biomarker Development Alliance, is being led by one of our key strategic advisors, Dr. Anna Barker, a former Deputy Director of he National Cancer Institute and current Co-director of the Complex Adaptive Systems program at Arizona State University.

The Alliance is made-up of key leaders from across the field of cancer research. We were delighted to participate in the launch, as well as a subsequent working meeting, as biomarker development is an issue that will be critical to developing precision therapies for the brain tumor community that target a patient’s specific tumor biology.

National Cancer Institute’s Director’s Consumer Liaison Group Meeting

Our Senior Director of Public Policy, David Arons, is a member of the NCI’s Director’s Consumer Liaison Group (DCLG) – a federal advisory group that provides the leaders of the NCI with the crucial perspective of patient advocacy groups.

The DCLG group met for the first time this year in late February at the NCI offices. This meeting was specifically dedicated to understanding barriers to pediatric cancer drug development and how to move past them. Our friend Max Wallace, CEO of Accelerate Brain Cancer Cure, is the current chair of this group and led an excellent meeting.

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Our Associate Director of Public Policy, Lainey, with COO of the National Organization for Rare Disorders, Pamela Gavin, at the Massachusetts Rare Disease Day rally

National Brain Tumor Society was able to take an active role in the meeting, as David was graciously named co-moderator, with Dr. Lee Helman of the NCI, of a panel discussion on the role patient advocacy organizations can play reducing these barriers, with leaders from Kids v Cancer, Children’s Hospital of Philadelphia, and the U.S. Food and Drug Administration,.

We are pleased that the NCI is listening to the pediatric cancer community and working in important ways to address issues that are standing in the way of getting more effective therapies to children with cancer.

Rare Disease Day in Boston, MA

Also in late February, we joined the National Organization for Rare Disorders (NORD) and the Massachusetts Biotechnology Council in celebrating Rare Disease Day in the U.S. by participating in an event at the Massachusetts State House to recognize the research being done to treat and cure rare disease, like brain tumors.

One Voice Against Cancer Lobby Day

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Advocate Gina on Capitol Hill with the National Brain Tumor Society’s Public Policy & Advocacy staff for the One Voice Against Cancer lobby day

Earlier this week, we headed down to Capitol Hill in Washington, D.C. as part of the One Voice Against Cancer Coalition – a group of 20 leading professional societies, public health groups, and patient advocacy organizations – to ask members of Congress to support vital medical research by increasing funding to the National Institutes of Health (NIH) and the NCI. The NIH and NCI are the largest funders of brain tumor research in the country, and provide the grants for much the critical basic science that is the foundation for new treatments.

Thank you to all of you who answered our call to lend the voice of the brain tumor community by completing our action alert.

 

Finally, we just concluded a “Pediatric Brain Tumor and Cancer Drug Development Working Group” meeting, which we hosted under the umbrella of Project Impact, in Washington, D.C. Look out in the coming days for a recap of this import gathering.

The rest of 2104 will remain busy as we continue to make the right connections, convene the right groups, and tackle the key problems slowing progress for brain tumor patients. We’re particularly looking forward to our annual Head to the Hill advocacy day on May 5 – 6; and in the fall, our 2014 Summit and Annual Meeting; Advancing Research to Treatments (ART) Conference; the second Brain Tumor Clinical Trail Endpoints Workshop; and many more.

…And did I mention our Spring Event Season is just about to kick-off? Hope to see you out there!

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