Category Archives: News

In Memoriam – Barbara Powers – The Brain Science Foundation

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Barbara J. PowersThe Brain Science Foundation is deeply saddened by the loss of Barbara J. Powers, sister of BSF Co-Founder Kathy Haley. Barbara was a tremendous supporter of the Brain Science Foundation since its inception. She was a lovely, cheerful person who brought a lot of smiles and laughter to the world. She will be deeply missed.

Barbara J. Powers, 57, of Southborough died on Sunday, April 7, 2013, at Metro West Medical Center in Framingham after a short illness.

Born in Framingham, she was the daughter of Nancy (DeLucia) Powers of Southborough and the late James J. Powers, who passed away in 1999.

Barbara was a 1973 graduate of Algonquin Regional High School and received her bachelor’s degree in 1977 from the University of Vermont.  For over 28 years she worked for Comdex and retired as the Vice President of Operations. After her retirement she was very active with the Brain Science Foundation of Wellesley, organizing golf tournaments and other fund raising events. Barbara was an avid golfer and Boston sports fan. She enjoyed spending time with her many friends. She especially cherished her time with her niece and two nephews. Barbara was a very kindhearted, fun loving, generous person, who will be greatly missed by all who knew her.

In addition to her mother, she is survived by her sister Kathleen Haley and her husband Steven of Dover and their children, Matthew, Courtney and Christopher Haley; two aunts, Jacquelyn Beale of Meriden, CT; Joan Murphy and her husband Jim of FL and several cousins.

Visiting hours will be held on Thursday, April 11, from 4:30 to 7:30 PM at the Morris Funeral Home, 40 Main Street, (Rte 30) Southborough.

A Mass of resurrection will be held on Friday, April 12, at 10 AM at St. Anne Church, 20 Boston Road (Rte 30), Southborough, followed by a burial at Southborough Rural Cemetery.

Memorial contributions may be sent in her memory to Brain Science Foundation, PO BOX 812701, Wellesley, MA 02482,

To leave words of condolence to the family, please visit

BSF Supporter Publishes Memoir – Proceeds to go to BSF Research

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Longtime BSF supporter, Meningioma patient, and physician, Jaleh Sahandy, MD, has published her memoir. The book, entitled Living with Brain Tumors: the True Story of Courage and Strength While Struggling with One’s Fatality is available on and

Dr. Sahandy has graciously offered to contribute 10% of the proceeds from her book to the BSF to help fund further research. The BSF would like to thank Dr. Sahandy for her generosity!

Click here for more information.

Brain Science Foundation Scientists Make Important Breakthrough!

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BSF Principal Investigators Priscilla Brastianos, Rameen Beroukhim, Ian Dunn, Peleg Horowitz, and Sandro Santagata have published new findings linking DNA mutations and meningioma, resulting from meningioma gene sequencing. This is particularly significant, as there are already specific drugs in use to target those mutations in other cancers. This discovery has been published by Nature Genetics and written up in the Bloomberg News.

BSF Founder Steven Haley was energized to hear this exciting discovery, saying: “This is truly breakthrough news with five of our PI’s at the forefront! It gives me hope, it provides me further inspiration that we are aligned with the right research and clinical investigators and are funding the right initiatives towards making a difference in treatment options providing hope for better outcomes for those diagnosed with Meningioma!!”

Read the write up
Read the full text
Read the Dana-Farber press release

Causes and Cures: A New Era in Research

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Elizabeth B. Claus, MD, PhD

What causes brain tumors is a mystery that people are struggling to understand and scientists are trying to solve. This article by neurosurgeon and epidemiologist, Dr. Elizabeth Claus, explains where we presently are in the search for answers.

What is epidemiology? It is defined as the study of the distribution and causes of disease risk in a population. Epidemiologists are scientists who try to explain why certain diseases affect some groups of individuals more than others and why some diseases occur in certain locations or at specific times. Epidemiological studies sometimes identify specific risk factors associated with a disease. This information may be used to help prevent or treat certain health problems.

There are many types of risk factors. Some are disease-causing agents such as viruses, while others are personal habits that make a person more likely to develop a particular disease, such as cigarette or alcohol use. Frequently, risk factors are divided into two categories: environmental and genetic.

Environmental risk factors generally refer to external influences to which an individual is exposed. Some examples include diet and outdoor sunlight. Genetic risk factors refer to an individual’s hereditary characteristics found in the DNA in his or her cells.

Genetic Epidemiology

Genetic or molecular epidemiology is an important new area of research which examines whether individuals with a certain type or variation of a particular gene have a higher risk for disease. In some instances, genetic changes may be transmitted from parent to child, as is true for the NF2 gene in families with neurofibromatosis. In other instances, the change occurs in an individual, possibly due to an environmental exposure. For example, frequent exposure to sunlight may cause genetic changes in skin cells leading to skin cancer.

While changes in certain genes may be associated with the development of some brain tumors, it is likely that most brain tumors develop as a result of a combination of genetic and environmental factors. The study of such interactions is an extremely important aspect of epidemiology that requires thousands of study subjects. As epidemiologists start to discover which combinations of genes and risk factors cause health problems, they will be better able to counsel individuals regarding their risk and thus help prevent disease.

Approximately 40,000 individuals in the United States will be diagnosed with a primary brain tumor in 2005. Epidemiological studies are vital given the lack of information on causes (etiology) or risk factors associated with the development and progression of these tumors. We also need to learn more about the outcomes associated with brain tumor diagnosis and treatment, including decreased quality of life and mortality.

Three general categories of epidemiological research are: descriptive studies, analytical studies, and clinical studies (or clinical trials). Descriptive studies describe who gets the disease (by age, gender, geography, etc.), how often it occurs (the incidence rate), and how severe it is (the mortality rate). Analytic studies compare groups of people with and without disease and analyze a wide range of possible environmental and genetic risk factors. Clinical studies investigate how well treatments or interventions prevent or control disease. Clinical studies have yielded valuable information about the role of certain genes in brain tumor progression and/or sensitivity to radiation or chemotherapy treatments.


A new era is coming in brain tumor research. The United States House of Representatives and Senate Appropriations Committee have targeted brain tumor research as warranting increased attention. Funding agencies such as the National Institutes of Health are working to increase financial support for the study of this important topic. Additionally, dedicated individuals have worked to assure that data on certain brain tumors such as meningiomas are included in federal cancer registries. These and other tumors are defined as benign but are associated with significant decreases in quality of life and years of life. As a result of this change, epidemiologists can more accurately identify and enroll patients in brain tumor studies.

Brain tumor epidemiology will also benefit from recent advances in genetics. New statistical and laboratory methods are being developed, enabling scientists to identify patterns in genes that might make a person more susceptible or more resistant to a brain tumor. These new methods will allow scientists to examine thousands of genes for hundreds of individuals, and will likely improve the ability of doctors to correctly classify brain tumors. Determining molecular and genetic markers within a given brain tumor may also enable scientists to tailor treatments to individual cancer patients, based on the genetic makeup of their tumors. In some instances this information is already in use in clinical settings. For example, data exist which indicate that some types of low-grade gliomas such as oligodendrogliomas may have varied response to chemotherapeutic agents based on certain genetic changes. The loss of chromosome 1p and/or 19q has been associated with a positive response to PCV chemotherapy treatment.

The current era is a key time to pursue epidemiological studies of brain tumors. We are moving ahead with large, population-based projects to collect information on genetic and environmental risk factors and possible interactions between the two. We are also making advances in molecular research, increased federal support, and new legislation to identify and register patients with benign brain tumors. The study of brain tumors is a greatly underserved area within epidemiology and genetics. Opportunity now exists to develop a focused group effort on this important topic in public health.

Elizabeth B. Claus, M.D., Ph.D. is an Associate Professor in the Department of Epidemiology and Public Health (Biostatistics) at the Yale University School of Medicine, New Haven, CT, as well as a neurosurgeon in the Department of Neurosurgery at the Brigham and Women’s Hospital, Boston, MA.

This article was reprinted with permission from Search, Issue #61 (Fall 2004). For more information, contact the National Brain Tumor Foundation at 800.934.2873 or visit

Coping With Personality & Behavioral Changes

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Edythe Vassall

After diagnosis and treatment for a brain tumor, a person often may not be the same. Changes in behavior and thinking occur in the majority of patients at some point during their treatment. The extent of changes can vary considerably from person to person. Changes can be as subtle as mild forgetfulness or as dramatic as deep depression or abusive, violent outbursts. This article will look at the reasons why behavioral and personality changes occur, and what patients and caregivers can do to cope with them.

What causes behavioral and personality changes?

Tumor location influences the type of symptoms. Here is an example:

While on a sailing trip with his wife Diana, Ray Rosenkaimer suffered a terrible headache. He became too disoriented and confused to continue sailing, and Diana took over the helm. The next morning Ray awoke feeling better and thought everything was fine. Instead, he had a frightening and shocking surprise.

“As I drank my coffee and began to look at the morning paper, I was struck with the horror of not being able to read one word. I could not believe it. The words held no meaning. I looked in my wallet to see if I could recognize myself on any photo ID or at least read my social security number. To my amazement I comprehended nothing. I was unrecognizable to myself. The person sitting across from me at the breakfast table looked somewhat familiar, but I neither knew her nor her name. I thought I had lost my mind.”

A large meningioma, the most common type of primary brain tumor, growing in the left temporal and parietal area severely affected Ray’s memory and language centers. Effects of pressure or “disconnection” of interrelated brain areas can cause problems that might not be expected. The illustration below identifies brain functions and their locations.

Brain functions

  •  Frontal lobe: Movement, intelligence, reasoning, behavior, memory, personality, planning, decision making, judgment, initiative, inhibition, mood
  • Temporal lobe: Speech, behavior, memory, hearing, vision, emotions
  • Pituitary gland: Hormones, growth, fertility
  • Parietal lobe: Intelligence, reasoning, telling right from left, language, sensation, reading
  • Occipital lobe: Vision
  • Cerebellum: Balance, coordination, fine muscle control
  • Brain stem: Breathing, blood pressure, heartbeat, swallowing

Tumor size and type are other factors. Larger tumors typically cause greater changes in thinking, yet a small tumor in a key language area can result in severe loss of function. Tumors that grow slowly such as pilocytic astrocytomas may not cause as much trouble because the brain has time to adapt to the tumor. However, fast-growing tumors such as glioblastomas put patients more at risk. Likewise, pituitary tumors can have an effect on personality by causing the overproduction or underproduction of hormones. Hormonal imbalances can cause problems with mood, emotions, body weight, and sexual function.

Treatment side effects

Surgery can reduce the pressure and swelling in the brain, which in many cases will alleviate the symptoms.

“Directly after surgery,” explained Ray, “I could recognize myself and my family. My speech improved as well as my reading. It wasn’t 100% but it was great to have some of it back.”

However, surgery can also cause changes. The type of symptoms would depend on the area affected.

Radiation therapy can produce brain swelling (edema), which can cause acute or sudden symptoms including headaches, irritability, and vomiting. After radiation therapy has been completed, many patients experience fatigue. These symptoms can impact a patient’s behavior. Steroids can often counteract the symptoms.
Chemotherapy is known to cause a decline in physical function. Nausea, vomiting, loss of appetite, and anemia can lower one’s energy level. Hair loss can have a negative impact on a person’s self-confidence and ability to socialize.

Chemotherapy can also affect thinking and personality. The term “chemobrain” is being more frequently used to describe this phenomenon. Cognitive and emotional changes reported during and after chemotherapy include memory loss, slowed thinking, reduced attention, anxiety, depression, and fatigue. Biologic therapies such as interferon alpha have been associated with declines in memory, reasoning skills, motor abilities, and mood disturbance. A combination of medication, modifications in behavior, and simple lifestyle adjustments can help the person dealing with these issues and symptoms.

Side effects of medications

Steroids such as dexamethasone (Decadron®) are commonly prescribed to manage edema. Steroids can cause patients to feel anxious, restless, or depressed. In such cases, the doctor may decrease the dosage or may prescribe anti-psychotic medication to control side effects.

Similarly, anti-epileptic drugs (AEDs) can cause unwanted side effects if the doses are too high or too low. AEDs can also react with chemotherapy drugs such as procarbazine and BCNU. These drug interactions can result in sleepiness, depression, confusion, and problems with gait, speech, and vision. Occasionally, symptoms include aggression, insomnia, and psychosis. A doctor may change the dosage or the type of AED to resolve these side effects.

Psychological trauma

The patient’s reaction to the diagnosis of a life-threatening illness can cause dramatic changes. Emotions may remain close to the surface and result in excessive crying or laughing, anger, or depression.

Troublesome symptoms such as lack of sleep, forgetfulness, and chronic pain can play a role in making things worse by causing irritability and frustration. Sharing feelings with family and friends is essential for any person dealing with a life-threatening illness. Psychological counseling, spiritual help, and support groups can help tremendously. So can anti-depressant medications.

Identify and manage the changes

Discovering the source of the problem is the first step. An excellent way to evaluate changes in brain functioning and to document cognitive strengths and weaknesses is to consult with a neuropsychologist.

A neuropsychologist is a specialist who studies the physical effects of brain injuries on mental abilities. Neuropsychologists conduct a series of paper and pencil or computer-based tests examining memory, thinking speed, attention, concentration, language, motor skills, and mood. The assessment also evaluates the individual’s ability to plan, reason, initiate, and organize (these are called the “executive functions”). Based on the test results, the neuropsychologist can give recommendations for therapies, medications, or strategies to help the person and family adapt to, or make up for, certain losses.

“It’s important for patients and family members to discuss not only prognosis with their physician, but also the impact the tumor may have on thinking and personality given its location within the brain,” advises Anne Kayl, PhD, a neuropsychologist at MD Anderson Cancer Center in Texas. “For most patients and families, this type of discussion can be a big relief. They recognize the changes are a result of something real and the patient realizes he or she isn’t ‘going crazy.’ Once we identify the problems in cognition, we can provide some ways to work around the deficits.”
When choosing a neuropsychologist, it is wise to seek one who has experience specifically with brain tumor patients. This is because brain tumors present differently than other neurological conditions such as stroke or head trauma.

Complications of memory loss

Memory loss is a common brain tumor symptom. Patients and family members often don’t understand why remote memories from years ago remain intact, yet the person can not remember where she puts things, forgets appointments, or keeps repeating the same information over and over again.“The patient isn’t being difficult or careless,” explains Dr. Kayl. “These symptoms are a function of the disease process.”

Dr. Kayl presented a case study that represents a typical experience of mild memory loss compounded by anxiety: Ms. Jones (not her real name) was diagnosed with a left frontal region tumor. She was treated with surgery, radiotherapy, and chemotherapy. Like many individuals diagnosed with a frontal lobe tumor, Ms. Jones reported language and memory problems. She had trouble finding the correct word in conversation and trouble recalling people’s names. Despite these mild impairments, Ms. Jones was fully capable of expressing her thoughts and carrying on an enjoyable conversation.

A neuropsychological evaluation failed to reveal any dramatic changes or decline in her thinking skills. However, it became clear that Ms. Jones was very troubled, self-conscious, and depressed about the changes in her memory skills and speech. She tried to cope by withdrawing from social activities that she used to enjoy. She avoided situations in which her memory loss might become apparent to others. When she found herself in social situations, her anxiety made things worse, creating a cycle of increasing anxiety and increased speech problems.

“Relatively mild cognitive changes were exacerbated by her depression and anxiety,” Dr. Kayl explained. “In such cases, supportive psychotherapy can be extremely helpful. I recommend a type of therapy called cognitive-behavior therapy, or CBT. This type of therapy is aimed at examining the interaction between thinking and behavior.

“Research has shown that this style of direct, problem-focused therapy is very helpful in treating depression and anxiety disorders. For many patients, CBT can be enough. But for some, medications are needed to ‘jump start’ their mood and enable them to become active participants in their treatment.”

With the help of a neuropsychologist, Ms. Jones was able to see how negative thoughts actually made her speech problems worse. Using cognitive-behavior therapy counseling, she developed more effective ways of dealing with her diagnosis. Relaxation training and visualization techniques helped reduce her anxiety. As her ability to manage her symptoms improved, she was able to increase her participation in family activities and community-based events, enhancing her self-confidence and quality of life.

People suffering from memory loss remain as independent as possible by taking advantage of the many excellent tools that can help compensate for problem areas. Devices such as date books, calendars, personal organizers (such as a Palm Pilot), checklists, watch alarms, and weekly pillboxes are useful as reminders. Setting up a routine and sticking to it can help greatly.

For emotional health, patient support groups can provide a welcome outlet to socialize. It helps to talk with others who have similar experiences and can share their triumphs as well as their pain. However, sometimes a person can feel overwhelmed, and a support group is not enough.

Dealing with depression and fatigue

The losses associated with a brain tumor can have a major impact on patients. A person who was the head of the household may lose the ability to work and to handle the family’s financial matters. An independent individual may become unable to drive a car and suddenly find himself totally dependent on others. Such serious losses can lead to frustration, anger, and depression.

Depression is more than normal sadness; it is a medical condition that produces visible symptoms. If left untreated, depression can suppress the immune system and lead to other health problems. Fortunately, depression is usually managed effectively with antidepressant medication. Talk therapy with a mental health counselor can also be of value.

Fatigue can severely limit a person’s ability to function. It can be a side effect of depression. Fatigue can also be a side effect of treatment or a symptom of anemia.
A physician can prescribe stimulants or other medication to combat fatigue. Also, exercise is helpful in restoring energy and overall vitality. It is important to consult with a doctor before starting an exercise regimen. By monitoring their energy levels during the day, patients can choose the times when they have the most energy to do tasks or activities that are more demanding.

Confusion and disorientation

Some patients complain of distractibility and an inability to focus. This can sometimes be caused by overstimulation – too many things going on at the same time. Many people who have had brain surgery have trouble managing multiple bits of information at once. For example, patients are often quite comfortable in one-on-one conversations, but become overwhelmed in group settings.

To handle overstimulation, patients themselves can take stock of what kinds of noises or situations cause the most problems and try to reduce those distractions. For example, ask people to turn off background television or radio noise when visiting or talking on the phone. If public places such as stores are confusing, try to shop when stores are less crowded. When feeling overwhelmed in a particular setting, a person may want to leave for a little while and find a quiet place to relax.

People with problems in executive functions can try using “process thinking.” This is a technique in which they speak out loud and create a step-by-step guide to the task they want to accomplish. Speaking out loud also forces a person to slow down his or her thinking, which reduces chances for impulsive errors.

Caregivers might also need to adjust their thinking. For example, asking a confused person to “clean up the kitchen” can cause frustration and anxiety for both parties. It is much better to make a written list, breaking the job down into several simple, clear tasks:  1) wash the pans in the sink, 2) put the clean dishes in cupboard, 3) wipe the countertop, etc.

Aggressive or combative behavior

Some behaviors present special challenges. In rare cases, a person can suffer from agitation or paranoia. Behavior can become aggressive or combative. These behaviors can be caused or intensified by various medications. Doctors manage these symptoms by modifying drug dosages, or by prescribing antipsychotic drugs or tranquilizers.

Aggressive behavior is particularly difficult when safety becomes an issue. The best strategy is to pay attention to warning signs of growing anger or threats of violence. Tell your doctor, and try to resolve the problem before it escalates.

When dealing with an agitated person: Try to create a calm environment. Reduce noise, bright lights, excess movement, and the number of people in the vicinity. Alternately, remove your loved one from stressful situations.

Speak calmly and maintain eye contact. Assure the person of his or her safety. Orient the person by identifying yourself and stating your intentions.

Find out if something specific is bothering the person and resolve the problem. For example, the person may be hungry, thirsty, tired, afraid of something, or need to go to the bathroom. Try to calm the person by encouraging him or her to talk and by listening to his or her complaints. Don’t disagree or argue with the person. Let the person talk until he or she calms down.

If the person becomes combative, remain calm. Take a few steps back and give the person plenty of room. Continue to agree and assure the person that he or she is safe.

Assess the level of danger. If the person is about to hurt himself or someone else and it is safe to intervene, step in and say “stop” or “no” in a calm but firm voice. Gently restrain the person if possible.

If you believe your own safety or the safety of others is at stake, do not hesitate to get help. If you call for outside help, make it very clear that your loved one is very ill and confused.

Inform your doctor immediately of episodes of uncontrolled rage, violence, or any dangerous, impulsive behaviors.

Using teamwork to cope

In all cases, it is important to notify your medical team about behavior changes. Chronic illness of a family member can cause emotional distress to the entire family. Dr. Kayl recommends an active role of patients and caregivers in finding ways to cope. “The bottom line for all interventions is this:  there is no magic bullet. Each patient will bring different strengths and weaknesses to the table. It’s up to the doctor-patient-family team to develop realistic and attainable goals for coping with cognitive and behavioral changes. What works for one person may not work for another. These are the differences that make us human.”

This article was reprinted with permission from Search, Issue #57 (Summer 2003). For more information, contact the National Brain Tumor Foundation at 800.934.2873 or visit