AMERICAN BRAIN TUMOR ASSOCIATION WWW.ABTA.ORG 1

American Brain Tumor Association

HeadlinesF A L L / W I N T E R 2 0 1 3VOLUME 40, NUMBER 2

®

IN THIS ISSUE

ABTA-Funded Discovery Research Yields Two New Drugs ...........140th Anniversary Dinner: “The ABTA is all of You”.......................2American Brain Tumor Association Supports Researchers’ Projects, Fosters Careers................................................................3ABTA and Health Care Professionals: Partners in Care ................3

Back on the Job: Returning to Work Following Brain Tumor Treatment .................................................................4Run for a Reason with Team Breakthrough ..................................6Real Progress, Real Hope ...............................................................7

u Continued on page 5

At the annual meeting of the American Society for Clinical Oncology (ASCO) in Chicago last June, results

were released from two clinical studies on the effectiveness of Avastin (bevacizumab) as a first-line therapy for patients with newly-diagnosed glioblastoma multiforme (GBM), the most malignant of all primary brain cancers.

These studies showed that patients who were treated with Avastin in conjunction with the chemotherapeutic drug Temodar (temozolomide) and radiation showed no improvement in overall survival rates.

While the results of those studies were disappointing, the research pipeline is robust with new approaches to treating these aggressive tumors. Some of these promising new therapies are the result of ABTA-funded research.

Recently we have learned that ABTA Discovery Grant funding has contributed to the development of two new drugs that target malignant gliomas such as GBM. One of the drugs has been picked up for follow-on funding by a venture capital firm, while the other has given rise to a new biopharmaceutical company.

David S. Baskin, M.D., and Martyn A. Sharpe, Ph.D., Department of Neurosurgery at the Houston Methodist Hospital and Dallas-based Remeditex Ventures LLC, have entered into an agreement to develop one of these new drugs, called MP-MUS. MP-MUS has been shown to kill human GBM in cell

culture and is now being tested against GBM in a mouse brain model. The drug is designed to be converted into a highly toxic form by a specific enzyme which is only highly expressed in GBM. The active form of the drug attacks the cancer cell’s powerhouse – mitochondria. Damaged mitochondria starve the cancer cells of energy, eventually killing the GBM cells. Another ABTA-funded study, being conducted by Rajesh Mukthavaram, Ph.D. in the lab of Santosh Kesari, M.D., Ph.D., is advancing research into small molecule inhibitors that target a protein called OLIG2. This protein, which is not active in normal brain tissue, is significant because large amounts of OLIG2 are found in almost all gliomas, including GBM. The abundance of this protein drives tumor growth and promotes resistance to radiation therapy. OLIG2 inhibitors will be administered in conjunction with the conventional therapeutic approach, which includes surgery and chemotherapy. The OLIG2 technology is licensed to San Diego-based Curtana Pharmaceuticals, of which Kesari is a co-founder. While both drugs are still in the very early phases of

development, results such as these are indicative of the breakthroughs that can be made when scientists are given the resources and encouragement to follow through with novel approaches to brain tumor treatments. To learn more about the ABTA’s research funding program, visit www.abta.org/advancing-research. u

ABTA-Funded Discovery Research Yields Two New Drugs

HEADLINES FALL/WINTER 2013 2

HeadlinesVOLUME 40, NUMBER 2

Our mission: The mission of the American Brain Tumor Association is to advance the understanding and treatment of brain tumors with the goals of improving, extending and, ultimately, saving the lives of those impacted by a brain tumor diagnosis.

We do this through interactions and engagements with brain tumor patients and their families, collaborations with allied groups and organizations, and the funding of brain tumor research.

Garett Auriemma: Director, Marketing & CommunicationsKate Butler: Marketing & Communications Manager

facebook.com/theABTA

twitter.com/theABTA

Please feel free to share Headlines with others. However, the contents are the property of the American Brain Tumor Association. Written consent must be obtained from ABTA before reproducing any part of this newsletter.

Copyright 2013 ABTA

American Brain Tumor Association8550 W. Bryn Mawr Ave., Suite 550, Chicago, Illinois 60631

Toll Free General Information: 866-659-1030Toll Free Care Line: 800-886-ABTA (2282)Toll Free Events: 800-886-1281

www.abta.org • info@abta.org

Headlines, the American Brain Tumor Association’s newsletter, is not intended as a substitute for professional medical advice and does not provide advice on treatments or conditions for individual patients. All health and treatment decisions must be made in consultation with your physician(s), utilizing your specific medical information. Inclusion in an ABTA newsletter is not a recommendation of any website, product, treatment, physician or hospital.

40th Anniversary Dinner: “The ABTA is all of You”

ABTA co-founders Susan Netchin Kramer (left) and Linda Gene Goldstein (right)

ABTA President & CEO Elizabeth Wilson (right) with 2013 Joel A. Gingras, Jr. Award recipients Phyllis (left) and Louis Jacobs (center)

ABTA co-founder Susan Netchin Kramer (right) with grandson, Kyle (left) and husband, Manny (center)

ABTA co-founders Susan Netchin Kramer ABTA President & CEO Elizabeth Wilson (right) with 2013 Joel A. ABTA co-founder Susan Netchin Kramer (right) with grandson,

Patients and caregivers, researchers and health care professionals, board members and staff—all came together for “An Evening of Love and Laughter,” the ABTA’s 40th anniversary dinner, held in Chicago on July 26, in conjunction with the

annual Patient and Family Conference.ABTA co-founders Susan Netchin Kramer and Linda Gene Goldstein were honored along with past board leadership.

Kramer was recognized as Co-Founder and Volunteer with Distinction.The 2013 Joel A. Gingras, Jr. Award, which is given annually to those whose efforts help advance the ABTA’s mission,

was presented to Louis and Phyllis Jacobs of Wichita, Kan. The Jacobs educate brain tumor patients and families in their community, as well as support the ABTA’s brain tumor research funding initiatives in memory of their son, Matthew.

The evening closed with a performance by Chicago’s legendary Second City, led by TJ Shanoff, accomplished Second City director and son of co-founder Goldstein. The comedy troupe ended their set with Shanoff ’s rousing original anthem, “The ABTA is all of You,” letting all gathered know: “The work you do, and the hope you give / Makes many lives so much better to live / Yes the ABTA is all of you.” u

Past ABTA board presidents (from left to right): Harold Temkin, Gail Segal, Don Segal, Linda Gene Goldstein and John Hipchen

TJ Shanoff (left) and Second City cast membersTJ Shanoff (left) and Second City cast membersPast ABTA board presidents (from left to right): Harold Temkin, Gail Segal,

AMERICAN BRAIN TUMOR ASSOCIATION WWW.ABTA.ORG 3

In an increasingly shrinking and selective federal research funding environment, scientists working on rare diseases

such as brain tumors are at a funding disadvantage. In a recent Wall Street Journal interview, National Institutes of Health Director Francis Collins underscored the need for these scientists to have access to alternative funding resources in order to pursue their projects and, indeed, their careers. Through research grants and educational forums, the ABTA is working to keep talented researchers in the brain tumor field and better prepare them for the professional challenges ahead. By working closely with researchers throughout—and beyond—their ABTA funding periods, the ABTA is ensuring that these scientists working in the brain tumor field have the knowledge, tools and resources they need for success. Following the completion of their funded projects, researchers present their findings to attendees of the ABTA’s annual Patient and Family Conference. The poster session provides opportunity for investigators to interact—often for the first time—with those who are living with the disease. In the words of one researcher, “It becomes very easy to lose sight of the big picture of why we get out of bed every morning and head into the lab. Interacting with patients and

discussing my research with them, and especially hearing their gratitude, strengthens my passion to further dissect the biology of brain cancer and translate these findings to the clinic.” The ABTA’s commitment to researchers continues beyond their funding period. This October, more than 30 ABTA-funded researchers gathered in Chicago for the second annual meeting of the ABTA Alumni Research Network (AARN). The program for this year’s AARN meeting was developed based on feedback that came directly from the researchers, and focused on career development and management, grant writing, and opportunities for exploring potential cross-institutional collaborative efforts. The meeting was co-chaired by Milan Chheda, M.D., 2008 ABTA Basic Research Fellowship recipient from Memorial Sloan-Kettering Cancer Center; and Vedrana Montana, Ph.D., 2009 ABTA Basic Research Fellowship recipient from the University of Alabama, Birmingham. Dr. Collins identified neuroscience as “the last frontier of medical research.” For many researchers, funding through independent groups like the American Brain Tumor Association is a vital first step into their futures and that frontier. u

Health care professionals are often the first-line individuals who provide information and support

for patients and families dealing with the shocking initial effect—and commonly, long-term effects—of brain tumors. These professionals need to continually maintain their knowledge of brain tumors, and they need to be able to disseminate this information to their patients. “Professional development is an important part of helping to move the brain tumor field forward, and health care professionals view the American Brain Tumor Association as a trusted resource for doing so,” says Mary Lovely, Ph.D., R.N., C.N.R.N., ABTA senior advisor, Mission Division. Earlier this year, the ABTA conducted a survey of health care professionals—primarily nurses and social workers—to assess their educational needs and to provide insights into the ways in which they use ABTA educational materials and offerings. Lovely, who authored the study, presented her findings at the Society for Neuro-Oncology’s Annual Conference in San Francisco this November. Most of the health care professionals surveyed (82%) sought information about brain tumors to assist patients as well as to increase knowledge for themselves. The top two resources for seeking information were the Internet

(75%), and professional organizations (55%). Respondents’ highest areas of interest were symptom management (70%), caregiving (66%), current treatments (62%), financial assistance (60%), palliative care (60%), hospice (58%) and current research (53%). According to these survey results, the ABTA is providing health care professionals with the information they are seeking. The programs and services to which health care professionals most often referred patients were the ABTA’s website and publications (65%), general resources (51%), the Connections online support community (46%) and printed materials for patients (41%). A write-in question asked about the specific websites the respondents used for information about brain tumor care. More than 25 websites were written in, with www.abta.org noted as the most commonly used website. “These results show that the vast majority of health care professionals seek information about brain tumors, not only to assist patients, but also to increase their personal knowledge,” said Lovely. “And to do so, they are turning to the ABTA. We are providing important, sought-after educational materials and programs to health care professionals who are interacting with patients and families every day.” u

American Brain Tumor Association Supports Researchers’ Projects, Fosters Careers

ABTA and Health Care Professionals: Partners in Care

HEADLINES FALL/WINTER 2013 4

For many brain tumor patients, side effects from the tumor or its treatment can compromise their ability to remain on

the job. This fall, just past the one-year anniversary of her diagnosis with a vestibulars schwannoma, Melissa VanBourgondien is hoping to return to the North Carolina accounting firm that she founded. Van Bourgondien was unable to work during her treatments, and relied on the generosity of friends and colleagues to keep her practice afloat. Chris Hargitt, a commercial real estate development and sales executive, was seven months into a new job as vice president of international sales when he received his brain tumor diagnosis. He asked to work from home just one week after his 2010 surgery to remove a glioblastoma and was surprised when his company’s human resources department asked for an authorization form from his medical team before allowing him to resume work. The following week, he asked to return to the office, and another authorization form was requested. His doctors also told him that he would need an occupational therapist assessment and approval to drive, which took four weeks to obtain. If and when to return to work requires soul searching, planning, collaboration and realistic expectations about what you can and can no longer do—and what will be needed from an employer and others for a successful transition back to the workforce. “It’s important to take a step back and ask yourself how important work is to you, beyond the paycheck and insurance,” said Rebecca V. Nellis, vice president of programs and strategy at Cancer and Careers. “What are the job demands—physical and mental? Do you commute? How will treatment and the effects of your tumor affect your work and schedule?” According to Nellis, if work matters to you, “it’s important to have a dialogue with your health care team. They need to

know that you want to work and what that means. Do you sit at a desk all day? Do you lift things? Do you drive from site to site? This is how your health care team can become an active problem solver in this process.” It is also important to be aware of the state and federal laws that protect brain tumor patients and others living with a serious illness or disability in the work place. (More information is available by contacting your local Equal Employment Opportunity Commission office or by visiting www.eeoc.gov/field/index.cfm.) Cancer Rights Attorney Monica Fawzy Bryant, chief operating officer of Triage Cancer, notes that many companies are willing to go well beyond what is legally required of them to accommodate individuals following a change in health status. “It’s almost always more effective for an employer to provide a reasonable accommodation than

Back on the Job: Returning to Work Following Brain Tumor Treatment

We are in the process of updating our database and reviewing our programming offerings. To help us better understand you and your informational needs, we’d like you to take a brief online survey. It should take no more than 5 minutes to complete, but the results will play a crucial role in helping us to continue to provide the information, education, resources and support that you are interested in and in a way that is the most convenient for you.

Visitwww.abta.org/surveyUpon completion of the online survey, you’ll be entered into a drawing for one of six pairs of complimentary registrations to a 2014 Breakthrough for Brain Tumors 5K Run & Walk of your choosing.

We’dLiketoHearFromYou…PleaseTakeOurOnlineSurvey

CareLineProviding answers,

support and resources.

800-886-ABTA (2282) abtacares@abta.org

The diagnosis of a brain tumor is the start of a journey nobody expects to take.

AMERICAN BRAIN TUMOR ASSOCIATION WWW.ABTA.ORG 5

to replace an employee.”This was the case for Hargitt,

whose position required he travel weekly. To accommodate his

limitations and schedule, his boss reorganized the office

staff and created a new position for Hargitt that

did not require travel.“That actually

was a relief,” said Hargitt. “I felt like I was able to travel, but my doctors were saying ‘no, you shouldn’t.’”

The reality is that while doctor visits and treatments may subside,

the effects of the tumor and related

treatment may continue indefinitely.

For Van Bourgondien, this

means acknowledging that her future work

schedule will not be what it once was, as she now has

diminished mental and physical energy and loss of hearing in one ear.

“There is no way that I can go back to my previous schedule,” she said. “I cannot

comprehend or think as quickly as I used to. As an accountant, you stay up until all hours doing tax returns. I feel like a toddler sometimes. I have to take my afternoon nap.”

“We hear a lot about how difficult it is to stay focused after treatment and that this can go on for much longer than people thought,” said Nellis. She suggests minimizing distractions as much as possible. “It’s about making lists, turning off interruptions such as mobile messaging apps when you need to concentrate, and keeping a single notebook” with important information. Rehearsing conversations, and writing and having a script in front of you before making phone calls also can help.

“Any little tool that can limit stress and increase control is important,” said Nellis. “Know your limits and set boundaries.” u

SupporttheABTAwithaLegacyGift

Remembering the American Brain Tumor Association in your estate plan is one of the most meaningful gifts you can give.

From bequests to beneficiary designations to other legacy gifts, there are any number of ways in which you can meet your financial needs and wishes and also support a strong future for the ABTA.

Visit www.abta.org/ways-to-give or contact Stacy Fass at 773-577-8781 or sfass@abta.org.

HEADLINES FALL/WINTER 2013 6

Everyone who runs distances does so for a reason. For some, it is the satisfaction from pushing oneself to new

heights. For many, it’s the desire to be a part of something much bigger than themselves. For members of Team Breakthrough, the ABTA’s endurance fundraising team, completing a marathon is a statement of achievement, of conquest, of honor. Curtis Sanford, a brain tumor survivor from Minneapolis, ran this year’s Bank of America Chicago Marathon with Team Breakthrough “to show brain tumor survivors, patients and supporters that life does not end with the diagnosis of a brain tumor.” “Though I’m now tumor free, running with Team Breakthrough is a way I can help support research funding and the ABTA’s patient and family support programs,” Sanford said. Chicagoan Josh Kaplan started running simply to get into better shape. By the time he was ready to tackle a full marathon, however, he had a loftier reason in mind—his sister, Kate, a brain tumor survivor. “I’m running 26.2 miles for my sister and my parents,” Kaplan said, “but also for everyone in need of hope and support during and after their treatments. After many

challenges, Kate has finally gotten back on her feet, and I’m so glad. Now it’s my turn to do something important – like supporting the ABTA in her honor.” Together, Curtis, Josh and the rest of the 75 Team Breakthrough members who took part in the 2013 Bank of America Chicago Marathon raised more than $133,000. Nationally, Team Breakthrough participants raised more than $250,000 in endurance races across the country during 2013.We applaud all of the members of Team Breakthrough and their efforts on behalf of team ABTA. To learn more about our marathoners and our scheduled 2014 races, visit www.abtateambreakthrough.org. u

Run for a Reason with Team Breakthrough

• March 15 – Washington, DCTeam Breakthrough at Rock ‘n’ Roll USA Full & Half Marathon

• March 23 – Atlanta, GA Team Breakthrough at Publix Georgia Full & Half Marathon

• March 29 – Tampa Bay, FL Breakthrough for Brain Tumors 5K Run & Walk

• April 12 – Los Angeles, CA Breakthrough for Brain Tumors 5K Run & Walk

• April 27 – Chicago, IL Breakthrough for Brain Tumors 5K Run & Walk

• April 27 – Long Branch, NJ Team Breakthrough at New Jersey Marathon & Long Branch Half Marathon

• May 10 – Novi, MI Breakthrough for Brain Tumors 5K Run & Walk

• May 17 – Spokane, WA Breakthrough for Brain Tumors 5K Run & Walk

• June 14 – Columbus, OH Breakthrough for Brain Tumors 5K Run & Walk

• June 21 – Seattle, WA Team Breakthrough at Rock ‘n’ Roll Full & Half Marathon

• July 27 – San Francisco, CA Team Breakthrough at The San Francisco Full & Half Marathon

• September 7 – Chicago, IL Team Breakthrough at Chicago Half Marathon

• October 12 – Chicago, IL Team Breakthrough at Bank of America Chicago Marathon

• October 19 – Columbus, OH Team Breakthrough at Nationwide Children’s Hospital Full & Half Marathon

• Fall 2014 – Dallas, TX Breakthrough for Brain Tumors 5K Run & Walk

• Fall 2014 – New York, NY Breakthrough for Brain Tumors 5K Run & Walk

• Fall 2014 – North Carolina Breakthrough for Brain Tumors 5K Run & Walk

*All dates subject to change | Purple = BT5K Orange = Team Breakthrough

Walk…Run…Breakthrough in 2014 By participating in one of our Breakthrough for Brain Tumors 5K Run & Walks or Team Breakthrough endurance events around the country, you’ll be helping the ABTA to provide critical resources and support and to fund research that helps advance the understanding and treatment of brain tumors. Here’s what’s coming up in 2014:

Forty years ago, a national organization committed to funding brain tumor research and improving brain tumor care was a bold notion. Back then, there was little promise or hope for those diagnosed with a brain tumor. Today, thanks to the generosity of a generation of supporters like you, we are seeing real progress and experiencing real hope in our efforts to advance the understanding and treatment of brain tumors. Your gift today will allow us to continue this momentum.

The American Brain Tumor Association’s long-standing commitment to young investigators is credited with having populated today’s brain tumor medical and scientific community. For a researcher, having an ABTA grant is a valued credential—it says that this individual has been identified as an innovative thinker with the potential of bringing real progress and real hope to the field. Many of the more than 600 scientists who have received ABTA research funding are now leading the nation’s most prestigious brain tumor centers. Several serve on our Scientific Advisory Council. Others are helping us to mentor a new generation of researchers.

With investors in medical research funding becoming increasingly risk averse, the ABTA is also playing a valuable role in de-risking novel research concepts. Through our Discovery Grants, funding is available for new ideas thought to hold the potential for dramatically changing the way brain tumors are diagnosed and treated. Recently, ABTA-funded discovery research has realized real progress by yielding two new brain tumor drugs—drugs that work very differently than any existing therapies for malignant brain tumors. And while it will be several years before they are available for human testing, these developments hold real hope for new approaches to brain tumor treatment.

Advances in technology and human genetics have led to an increasing interest in brain tumor survivorship. In addition to providing more comprehensive survivorship information and supportive services, the ABTA has funded and continues to explore research opportunities which are leading to real progress in our understanding of the long-term effects of brain tumor treatments on one’s quality of life. We are also collaborating with a number of brain tumor funders on a research effort to better understand the characteristics of long-term survivorship among patients with glioblastoma, and why it is possible for some but not others. The findings from this study could hold real hope for new directions in brain tumor treatments.

Because of you, the ABTA is fostering real progress in brain tumor research and care. As the first and now only national organization providing brain tumor research funding as well as support and education programs for all tumor types and all age groups, we are bringing real hope for brain tumor breakthroughs.

Together, we will improve, extend and, ultimately, save more lives. Thank you for your support.

Elizabeth M. WilsonPresident & CEO

Please donate today. Visit www.abta.org/progress or use the envelope in this newsletter.

1311039 ABTA Fall Appeal Newsletter Ad v1r3.indd 1 11/19/13 2:54 PM

8550 W. Bryn Mawr Ave., Suite 550Chicago, Illinois 60631

• S AV E T H E D AT E •

American Brain Tumor Association 2014 Patient & Family Conference

Don’t miss out on this opportunity to meet with and learn from leading brain tumor health care professionals, researchers and other patients and caregivers. More information will be coming soon. Questions? Email info@abta.org.

Renaissance Chicago O’Hare Suites Hotel

July 25-26, 2014