fall I 2012
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Heads Up headlines
Success In Advocacy Adds 15%
Your advocacy efforts made the difference in the lives of brain injury survivors
For the last two decades, the Brain Injury Association of Massachusetts has advocated for an increase in the percentage of collections received by the courts from speeding, Driving Under the Influence (DUI) and Driving While Intoxicated (DWI) violations in the Commonwealth. These funds go into the Head Injury Treatment Services (HITS) Trust Fund to support community-based brain injury services. After years of walking the hallways of the state house, BIA-MA’s advocacy efforts paid off when Governor Deval Patrick signed the FY’ 13 budget, effectively signing into law a 15 percent increase of funds for brain injury community-based services. “BIA-MA thanks the countless families, survivors, advocates and professionals in the brain injury community that worked tirelessly over the last seven months by contacting their state legislators seeking to increase funds for brain injury services,” says Arlene Korab. “Your efforts have made a tremendous difference.” This year’s lengthy legislative Bicycle and Helmet process began in Safety.................3 the fall of 2012 with BIA-MA attending state SLI Warns NCAA hearings and athletes about then following CTE....................9 the budget process through its course from Summer Races the Governor’s Raise Money budget, through for Brain the House Ways Injury...............12 & Means Budget, House Budget,
inside this issue
BIA-MA Executive Director Arlene Korab and Assistant Executive Director and Manager of Education Nicole Godaire advocated on behalf of brain injury services.
Senate Ways & Means Budget, Senate Budget and finally to the Conference Committee. Throughout the process, BIA-MA encouraged advocates, families, friends and professionals to call State Legislators about brain injury service needs with personal stories to help influence decisions. With the leadership and aid of Representative Kimberly Ferguson (R-Holden) and Senator Harriette Chandler (D-Worcester), the Senate Ways and Means Committee recommended the bottom line increase of $1.5 million to support community-based brain injury services in the Commonwealth annually. “This is an important first step in making sure that the funds initially intended for the Massachusetts Head Injury Trust Fund are recovered by the increase in the percentage of base revenue from traffic violations from 60 to 75 percent,” says Chandler. “It is my hope that this amendment will direct more traffic violation revenue currently going into the State’s General Fund to the Head Injury Trust Fund, where the funding will be used to address major gaps in services for the Brain Injury Community.” Story continued on page 11...
For more information about the BIA-MA, call 1-800-242-0030 or visit www.biama.org
BIA-MA Board of Directors
ecovery after a brain injury can feel like a journey with an unclear path. Reflecting Officers on my 12 years of working in a rehabilitation hospital, I am astounded at how much has Kenneth Kolpan, Esq. changed in terms of prognosis and recovery. President While it was once thought that the process of Teresa Hayes, MSW, LISCW recovery occurred within the first six months President-Elect following a brain injury, mounting evidence has shown that this simply is not true. The central David Dwork, Esq. Treasurer nervous system has an ability to remodel itself (known as neuroplasticity). With therapy and practice, survivors can Harold Wilkinson, M.D., Ph.D. actually change the physiological organization of the brain and enhance Secretary recovery of motor skills. It is a lifelong process. David “Chip” Bradley, Jr. It is vital that service professionals, particularly those in healthcare, Survivor Council, Co-Chair stay abreast of the latest evidenced-based research. Also, survivors and their caregivers need to know how to maximize recovery. Matthew M. Martino, CFA I was recently contacted by a gentleman whose sibling had sustained Member a brain injury in another state. He was looking for experts in brain injury who could help find the right medical rehabilitation setting, assist Members with legal issues, help navigate the insurance industry, and assist with financial planning. He also needed emotional support to maintain his Robert C. Cantu, M.D., M.A., FACM responsibilities as a husband, father and son. All of these resources Neurosurgeon & Co-Founder, needed to be accessed within the first few weeks after the accident! Sports Legacy Institute I am inspired by family members, like this brother, and brain injury John C. Byler survivors who are motivated, passionate and tireless advocates. Maybe it Survivor and Author is why I became a licensed social worker. It thrills me to help someone. It is also why I accepted a position on the BIA-MA Board of Directors. We Ellen Deibert, M.D., CBIST have a vision of expanding knowledge about brain injury—prevention, Neurologist & Clinical Consultant, ImPACT recovery, and resources—and making survivors, family members and Leslie Lightfoot professionals aware of what is available. CEO and Founder, Veterans Homestead, Inc. BIA-MA’s calendar of events will include more programs for Marilyn Price Spivack survivors and their caregivers to fuel advocacy and improve care. Founder of BIAA and Family Member Professional education will advance to attract increased participation. We want to impart the information that allows all stakeholders to be Executive Director proactive in their approach to treating brain injury. Teresa Hayes, MSW, LISCW, is Director of Business Development Arlene Korab at Braintree and New England Rehabilitation Hospitals, and Presidentelect of BIA-MA’s Board of Directors.
Congratulations to the Brain Injury Association of Massachusetts! “Making lives better for those with brain injuries.” Attorney Kenneth Kolpan www.kolpan.com email@example.com
Advertising deadline for the Winter issue is October 8. To advertise, please contact Emmy Llewellyn at firstname.lastname@example.org or 508-475-0032, ext. 25.
BIA-MA does not support, endorse or recommend any method, treatment or program for persons with brain injury. We only aim to inform you. No endorsement is intended or implied.
prevention Bicycle Helmets—A No-Brainer While bicycling can be a fun and energizing activity with numerous health benefits, there can also be risks involved with bikes as well as other outdoor items on two wheels. “The most at-risk age group for bicycle-related injuries is children ages five to 14,” says BIA-MA Manager of Prevention Programs BJ Williams. “In Massachusetts, state law requires individuals ages 16 and under to wear a helmet when riding a bike, scooter, in-line skates, or skateboards. According to the Centers for Disease Control (CDC), the foremost cause of death and long-term disability in bike accidents is traumatic brain injury (TBI). In addition, more than 140,000 children are treated in emergency rooms across the United States for TBIs sustained while riding a bike. With these startling statistics, it is important to take precautions when riding and using these outdoor items. Wearing a helmet is just one of the steps that bicycle riders can take to help promote their own safety. Bicycle helmets reduce the risk of head and brain injuries by up to 88 percent for riders of all ages. And, if children are discouraged to wear helmets by their peers who say helmets are “un-cool,” here are some reasons why the positives of helmets outweigh the negatives. 1) If you fall from your bike, scooter, skates or skateboard, a helmet will absorb the impact if your head hits the ground. Even a low-speed fall on a bike path can be debilitating. 2) Helmets are light and less invasive, weighing about half of a pound. 3) If all bicycle riders wore a helmet, one life would be saved every day and one head injury would be prevented every five minutes. 4) Professional athletes comply with safety standards and wear helmets to participate in
such sports as bicycling, skateboarding, skiing, and football, and you should too. 5) Most bicycle-related injuries occur within one mile of home. So, whether you are riding to your friend two houses or three miles away, a helmet could save your life. 6) Helmets come in cool designs and there are different helmets depending on the different sports you play. Be sure to only wear a bike helmet when riding your bicycle. Sports like skiing, lacrosse and football have other helmets for a reason. “Try on helmets to make sure you have the sizing correct,” says Williams. “A poorly fitting helmet can be almost as dangerous as wearing no helmet at all.” According to the Bicycle Helmet Safety Institute, a properly fitted bike helmet rests slightly above the eyebrows and will not slide over the head easily. Helmets should be worn level on the head, not falling forward over your eyes or pushed back to your hairline. The straps of the helmet should form a “Y” beneath your chin and a “V” around your ears. The helmet should be snug but should not pinch your skin. Make sure you replace your helmet every five Rebuilding Lives After Brain Injury years or right away after a collision or fall. With Community-based programs tailored to the needs all this information, bicycle helmets really are a of each individual across a continuum of care. no-brainer. For tip cards on helmets and recreational safety, call BIA-MA at (800) 242-0030 or e-mail Neurorehabilitation Supported Living Host Home email@example.com. Transitional Living Day Treatment n
survivor story Local Survivor Shares Story through Girl Scouts Fifteen-year old Christina Buffo recently received her Girl Scout Silver Award for her “Helmet Safety” project in which she prepared presentations for elementary school students on the importance of wearing a helmet when riding a bicycle. She delivered multiple presentations to groups of up to 400 students at a time and distributed BIA-MA’s helmet fact cards and other educational materials. Christina wasn’t just motivated to help others, the inspiration for her project came from her own brain injury that she sustained while riding her bike in October 2010. “My Dad planned a trip for us to go to Block Island and we wanted to do some biking,” says Christina. “We prepared our bikes and made sure to wear our helmets, but the road had lots of hills and potholes, so it was hard to focus on everything.” Christina didn’t see her brother stop at the crest of a hill, causing her front tire to crash into his rear tire, sending her over the handle bars and onto her head. Christina suffered a seizure at the scene and needed to be transferred to two different hospitals before meeting with a neurosurgeon who told Christina she suffered a subarachnoid hemorrhage or
New England Rehabilitation Hospital The center for Brain Injury recovery. At New England Rehabilitation Hospital, we specialize in brain injury, but most of all, we specialize in your recovery. With personalized treatment plans, and the most advanced rehab technology, we’re able to give our patients and their families the care and support they need. • Inpatient and Outpatient Programs • Patient and family education • Bioness® H200™ and L300™ • Home assessments for discharge planning • Behavioral management New England Rehabilitation Hospital is proud to support the work of the Brain Injury Association of Massachusetts.
2 Rehabilitation Way • Woburn, MA 01801 • 781-939-1875 www.newenglandrehab.com
bleeding in the area between the brain and the thin tissues that cover the brain. This area is called the subarachnoid space. In addition, she tore ligaments in her wrist. Silver Award Girl Scout Christina Buffo used her story to Christina slept help others. for three weeks before going back to school for one to two periods a day. During her continued participation in Girl Scouts, Christina knew she wanted to pursue the second highest award in girl scouting—the Silver Award. “I wanted to do something to help people, especially kids, and there are a lot of kids in my neighborhood,” says Christina. “I figured I could tie in my desire to help kids with the idea that helmets can prevent serious brain injuries.” Christina gave 30-minute presentations at five different elementary school classrooms in Westborough. She reached more than 800 kids with her message on helmet safety. “I told them an abbreviated version of my story and that I was OK and could come talk to them because I had worn my helmet,” says Christina. “I selected volunteers to model correct and incorrect ways to wear a bike helmet and did the egg demonstration that shows what happens to your brain on impact by dropping two eggs on the ground. The egg with the styrofoam ‘helmet’ did not break.” “I think for Christina it was a really unpleasant experience, and she wanted to use it to make something positive out of something negative,” says Leslie Buffo, Christina’s mother. “By choosing to talk to the younger kids about helmet safety and everything, it helped balance things again in our world. I think when you speak from the heart too, and these kids were closer to her age, they could identify themselves in the situation more than if an adult were talking to them.” “Make sure to wear your helmet when you are riding your bike, make sure that it meets helmet safety standards and doesn’t slide around on your head,” says Christina. “It’s also important for parents to wear their helmets because younger children are influenced by what their parents do. If you don’t wear a helmet, your child won’t either.” Fact cards and other materials are available through BIA-MA and can be requested by calling (800) 242-0030 or e-mailing firstname.lastname@example.org.
support & resources A Common “Wealth” of Information and Resources on Brain Injury
BIA-MA’s professionals provide information on more than 1,400 different services and providers around the commonwealth including: • Adult Day Health Centers • Attorneys • Case Managers • Dentists • Domestic Violence • Education • Financial • Home Health Care • Independent Living • Neurologists • Neuropsychologists • Neurosurgeons • Neuro-opthamologists • Occupational Therapists • Physical Therapists • Psychiatrists • Rehabilitation (inpatient & outpatient) • Speech-Language/ Cognitive Therapists • Substance Abuse Treatment facilities • Support Groups • Transportation • Veterans • Vestibular • Vocational In 2011 BIA-MA’s Information and Resources (I & R) Department sent out 51,000 packets of material, including articles, brochures, and fact cards, to survivors, family members, and professionals. “The desire for services and information is high,” says Myles Marisseau, Manager of Information and Resources. “We also have a glossary of terms, list of support groups, and symptoms of brain injury on our website – www.biama.org.”
200 Ivy Street Brookline, MA 02446-3907 • (617) 620-7779 • Clinical, educational, vocational, day and residential therapeutic programs for students with acquired brain injuries and other neurological challenges. • Monthly Family Support Groups • Consultation and Inclusion Support Services • Interdisciplinary Team Approach • Year-round programs for adolescents age 13-22 • DOE and OCCS approved
Have you or someone you know….
• Been hit on the head or punched in the face? • Had your head slammed into an object? • Been made to fall and hit your head? • Been choked, strangled or shaken? Relationship violence can cause brain injuries, even without a loss of consciousness. According to a study, about 75% of those assaulted sustained at least one partner-inflicted brain injury. Half have sustained multiple brain injuries. In addition, approximately 1 in 3 high school students and 1 in 5 college females experience some form of dating violence. Such brain injuries can affect: • behavioral, emotional, and social abilities • speech/language abilities • cognitive abilities • physical abilities Many times an individual’s injury may not be identified, and his or her behaviors are not understood to be part of such injury. Symptoms can include confusion, trouble concentrating, remembering or following directions, loss of balance, headaches, vision changes, or fatigue. Let the Brain Injury Association of Massachusetts be your compass and help guide you. Our Information and Resources Department can assist you by providing lists of professionals and services, as well as coping articles and educational information. For more information and resources, call (800) 242-0030 or visit www.biama.org/resources.html
Vinfen provides a comprehensive array of services to children, youth and adults with psychiatric, developmental and behavioral disabilities. Vinfen • 950 Cambridge Street • Cambridge, MA (617) 441-1800 www.vinfen.org
professional perspectives Be Proactive—Start a Support Group
Do you ever feel that you are walking a clinical tightrope, constantly trying to balance the needs of your patients from a physical, emotional, and social level? Working as a speech-language pathologist in an outpatient setting has caused me to hone my balancing skills in ways I never imagined. Perhaps, you have experienced this scenario: loose ends in therapy are tied up; a home exercise plan is put in place; family and friends are educated; and the individual is left…..with what? In so many circumstances they are simply just “left.” As professionals, we too are left sad, frustrated, and dismayed. For me, one answer to this dilemma was to start a stroke and traumatic brain injury support group for survivors, family, and friends. I am pleased and humbled to say it has been a success! “It’s not as hard as you think to start a group and more rewarding than you can imagine. Resources are plentiful, especially in the day and age of internet search engines!” Once a month a group assembles to give and receive encouragement, advice, and ideas. It is a place where survivors are given the space, grace, and time to say what needs to be said. The group provides
Brain Injury Programs
Together, we provide affordable, accessible housing with individualized supports so that survivors of brain injury can achieve their highest level of independence in the community. Each of our residences provides a barrier-free, homelike atmosphere with individualized supports provided in accordance with residents’ needs and preferences. Private-pay units now available For more information, visit: www.SupportiveLivingInc.org www.AdvocatesInc.org/Services-BrainInjury
an atmosphere to share the challenges and victories experienced during the lifelong recovery from stroke or brain injury. When I asked members what the support group means to them, their answers were varied, but all rang true: • A safe place to socialize and develop friendships. A survivor’s support network often decreases in the aftermath of illness. • A time to set goals and hold each other accountable. Goals may range from getting a driver’s license back to eating healthy snacks. • A chance to share wisdom regarding challenges they have faced and how they overcome them. • An opportunity to follow through on what their peers have suggested because their fellow survivors “get it.” Our group makes an effort to identify topics and resources the members would like to learn more about. We have been joined by a grief counselor, financial planner, therapeutic recreation therapist, physical therapist, occupational therapist, speech-language pathologist, pharmacist, and acupuncturist. Each topic has been beneficial and informative to members and their families. I am often able to take tidbits of information from these varied presentations and use them in therapy. The group also allows me to stay in touch and witness the progress of previous patients. While the members of my support group always thank me at the end of each meeting, it’s really us thanking each other as we continue to strive to find balance in the world of recovery from brain injury. The most important skill to being an effective group leader is the ability to listen. If you ‘hear’ what your group needs and wants, you will then be able to guide effectively. You will understand their heartaches and joys, and you will have the privilege of being a part of it. Jessica Anderson MS, CCC-SLP is a Senior Staff Speech-Language Pathologist, Outpatient Department, at Northeast Rehabilitation Hospital in New Hampshire. For more information about her group e-mail Jessica at email@example.com. The Brain Injury Association of Massachusetts has 33 support groups throughout the Commonwealth. If you want to start a support group, contact Barbara Webster at firstname.lastname@example.org.
survivor tips “I’d Like You To Meet What’s-Her-Face” “Hi, Darla,” Aretha said, greeting her new friend. Darla stood back, silently, her head down. She knew she should remember this lady’s name. Her face looked so familiar, yet her name just wouldn’t come to mind. The two women had been introduced the previous week at a support group meeting and seemed to hit it off immediately. Understandably, people often feel embarrassed about forgetting someone else’s name. After all, your own name is very important to you; it is part of how you define yourself—your identity. It’s important to realize, though, that everyone has trouble remembering names from time to time. Also, it’s unrealistic to expect that you will remember everyone’s name. Some poeple have a hard time just learning news names to begin with, while others have trouble recalling names of people they already know. Try some of the following tips to see if those embarrassing moments become fewer and far between.
Remembering Names of People When You Meet Them 1. Pay attention while being introduced. Stop what you’re doing. Look at the person. What is it about the way this person looks that I will most likely remember? For example, size—heavy, thin, tall, short; hair—curly, thin, long, color; facial features—nose, mouth, eyes. Listen carefully to the name. If you don’t catch their name when it was originally told to you, ask for it again. Saying it immediately will help you remember it when they walk away. 2. SAVE the person’s name. • Say the name at least three times in conversation. When first introduced, use the person’s name several times as you talk to them. For example, you might say, “Hi Jim, nice to meet you.” “So, what do you do for a living, Jim?” “Do you have any kids, Jim?” • Ask a question about their name. For example, “Is that Catherine with a ‘C’ or with a ‘K?’” • Visualize or try to picture in your mind something about the person you are most likely to remember. • End the conversation with their name. For example, “Jim, it was great to meet you!” 3. To cue your memory for the person’s name, try to associate the person’s name with: • Something or someone familiar to you— someone you know like your aunt or friend; a celebrity, famous person or TV/cartoon character; a thing or animal; a product brand name; or an occupation like a driver or cook. • A rhyme—like Clark/lark, Puckett/bucket, Crump/slump, Blake/bake.
• Familiar-sounding words—like Hightower sounds like ‘high’ + ‘tower,’ and Jackson sounds like, ‘Jack’ + ‘son.’ • A noteworthy physical feature or personality characteristic—you might think of someone with a full head of blonde hair as, “Ryan the Lion,” or a very tall girl might be “Tall Tiffany.” • A “mind” picture—The more outlandish and colorful the picture, the easier it will be to remember. Longer names may need to be broken down into syllables to create memorable pictures. For example, to remember the name “Pitchford” you could think of the person pitching something at a Ford Bronco. 4. Repetition. Repetition. Repetition. Say the name silently to yourself a couple times. Then, try to use the person’s name in conversation repeatedly. Introducing the person to others can be an easy way to repeat the name without drawing attention. 5. When possible, make notes. For example, make notes in your daily calendar or organizer, or on a note pad, program or business card. Include things like the person’s name, prominent features, what you liked about him or her, what you talked about or the person’s interests, job or family. Review the name often until it is familiar. Try to use the person’s name in everyday conversation; even if you just say it to yourself. A word of caution: You will find the more “odd ball” your memory cues are, the easier they are to remember. It’s a good idea to keep the cues to yourself so as not to offend anyone. story continued on next page...
survivor tips “I’d Like You To Meet What’s-Her-Face” (continued) When You Can’t Remember the Name of Someone You Know Getting upset will only make it harder for you to recall the person’s name. Remember, those chemicals that make your stomach all queasy when you get worried also affect your brain. Instead of asking yourself, “what’s his/her name” over and over again: 1. Ask yourself other questions about the person besides their name. • Who is the person’s ___________? (e.g., husband, wife, child sister, uncle, etc.) • What does this person do __________ ?(e.g., for a living, for fun, etc.) • When did I ____________ (e.g., last see, first meet, etc.) this person? • Where does this person ___________? (e.g., live, work, go to church, etc.) Once you can recall other details, their name tends to come to mind. 2. Say the alphabet from A to Z under your breath. Sometimes saying the first letter of their name will trigger your memory.
3. Ask again. If you run into someone whose name you forgot, ask them again. Remember: Most people would rather that you ask their name again than for you to feel badly that you forgot. 4. Have an “I-forgot-your-name” speech handy just in case. Here are a few sample sayings. You can try one of these, or come up with your own. Practice your “speech” by saying it to yourself several times. Review your speech before you go to a social gathering. • “Of course I remember you, but your name seems to have escaped me.” • “I’m so sorry. I’m drawing a blank on your name.” • “Would you please refresh my memory? Your name is...” • “Hi! I don’t know if you remember meeting me before. My name’s [say your name]. What’s yours?”
Darla decided to take steps to remember the names of the people she meets in her support group. Each time she meets someone new, she stops, looks, and listens to the person. She says the name at least three times while they are talking. Then she writes his or her name in her organizer, putting a short description next to each person’s name. Darla also writes something to associate the person’s name with something easy to remember and studies her list before each meeting. Darla’s list looks like this: • • • •
Aretha—curly, brown hair, tall (Aretha Franklin). Sam—short, blonde hair, glasses (Uncle Sam). Brice—long brown hair, pretty (rhymes with rice). Henry—heavy, beard, red hair (1st boyfriend’s name; hen red).
To remember the names, she also made an acoustic sentence: A Small Box Hops. It’s easy to remember because it is so silly.
For more tips on memory and other brain injury issues, visit www.biama.org/resources.html or contact the Information and Resources Office at BIA-MA by calling (800) 242-0030 or e-mailing email@example.com
Tips are reprinted from Memory Matters: Strategies for Managing Everyday Memory Problems by Deborah D. West and Janet Niemeier, with permission from Virginia Commonwealth University and The National Resource Center for Traumatic Brain Injury at www.tbinrc.com.
research & development Sports Legacy Institute Warns College Students of CTE
The topic of concussions has been increasingly present in schools and the media with more states requiring concussion education for parents, coaches and student athletes. One of the reasons is because of groundbreaking evidence of brain degeneration following repeated blows to the head. Researchers with the Journal of Neuroscience found that mild traumatic brain injuries (TBIs) caused by sports or accidents led to malfunctions in certain areas of the brain that didn’t sustain the direct physical injury. Different areas of the brain may act abnormally due to the result of a network dysfunction after a hit to the head. Recent research has proven that Chronic Traumatic Encephalopathy (CTE) can develop not only as a result of many concussions, but also from smaller, less traumatic blows to the head. CTE, originally referred to as “dementia pugilistica” because it was believed to only affect boxers, is a progressive brain disease believed to be caused by repetitive trauma to the brain, including concussions or subconcussive blows. CTE can only be definitively diagnosed after death through examination of the brain, and in recent years it has been diagnosed in dozens of former athletes at multiple research centers, including active and former college athletes. CTE is characterized by deposits of an abnormal protein called tau in the form of neurofibrillary tangles, glial tangles, and neuropil threads throughout the brain, and, in some cases, the presence of another protein known as TDP-43. These abnormal proteins are associated with the impaired functioning and eventual death of brain cells. NFL players have been warned of long-term consequences of brain trauma as part of concussion education since 2010. Likewise, the Commonwealth has adopted legislation to protect high school athletes, and regulations are being implemented by the Department of Public Health in schools across the state. However, colleges have not been as aggressive in educating the many young adults that play at this level about the risks of CTE. The non-profit Sports Legacy Institute (SLI), led by sports brain trauma expert and BIA-MA Board Member Dr. Robert Cantu and Chris Nowinski, called on the National Collegiate Athletic Association (NCAA) to warn athletes about the risk of developing CTE from repetitive brain trauma in sports. In 2010 the NCAA began requiring concussion education for athletes and requiring members to develop and implement concussion management programs. However, concussion education materials provided by the NCAA to student athletes make no mention of the risk of CTE, or symptoms associated with any degenerative brain disease for which brain trauma is an established risk
factor, as a long-term consequence of concussions and subconcussive brain trauma. In contrast, since 2010 the National Football League players have received concussion education materials developed by the NFL, NFL Players Association, and Centers for Disease Control and Prevention (CDC), warning that traumatic brain injury can cause a wide range of short- or long-term changes affecting thinking, sensation, language, or emotions. These changes may lead to problems with memory and communication, personality changes, as well as depression and the early onset of dementia. Concussions and conditions resulting from repeated brain injury can change your life and your family’s life forever. “CTE can be a devastating neurological disease, and anyone voluntarily exposing themselves to repeated brain trauma should be warned of the consequences, even though we cannot yet perfectly quantify the risk,” says Dr. Cantu. “NCAA athletes are not financially compensated for the health risks to which they are exposed. We need to appreciate the irony of asking scholarship athletes to trade a free education for the risk of a degenerative brain disease that may minimize the benefit of that education. Athletes deserve to have informed consent and the opportunity to modify their behavior based on established science,” said Chris Nowinski, a former All-Ivy defensive lineman for Harvard University. University of Pennsylvania football co-captain Owen Thomas committed suicide in April 2010, and was diagnosed with CTE despite never having a diagnosed concussion. Owen’s mother, Reverend Katherine E. Brearley, stated, “As responsible parents we had warned Owen of many life dangers such as drinking and driving, HIV, illegal drug use. If we had read some simple materials about the effects of CTE, it would have allowed us to start a conversation with Owen. This would not have changed the fact that he had CTE, but we would have tackled that possibility as a family. We need materials for parents and young athletes to help them engage in a meaningful dialogue about the possible dangers.” ”It is important to make college athletes aware of the potential consequences of their sports concussions like we are doing with high school and professional athletes,” says BIA-MA Executive Director Arlene Korab. “We need to bridge the gap in educating athletes on the long-term devastating consequences of repeated brain injury. Every athlete should be able to make informed choices.” Some source material taken from a Sports Legacy Institute press release with permission.
Strength is physical. Strength is mental. Strength is emotional. We help you find the strength you need. Spaulding is proud to support the Brain Injury Association of Massachusetts.
advocacy Success In Advocacy Adds 15% (continued)
For the increase to be final, the budget faced the Conference Committee, made up of six individuals— three each from the House and Senate. The Committee reconciled the differences between the House and Senate budget proposals, and voted to make the suggested increase to the HITS Trust Fund. “I am thankful for my colleagues in the Senate, House of Representatives, and the Governor for being sensitive to the tremendous needs of individuals living with brain injury all across the Commonwealth,” says Sen. Chandler. BIA-MA Executive Director Arlene Korab and Assistant Executive Director and Manager of Education Nicole M. Godaire gathered informational materials across the Commonwealth to make a compelling case to increase brain injury services. They met with 46 members of the House of Representatives and 40 State Senators, and completed hundreds of phone calls, e-mails and visits to State Legislators to make this a successful effort. “BIA-MA could not have accomplished this level of success without the help of support group members, family and caregivers, brain injury survivors and professionals within the brain injury community,” adds Korab. The passage of this amendment will increase brain
injury communitybased services to include case management and day services for survivors. These services will positively change the lives of many Massachusetts Sen. Chandler (right) helped initiate the Governor’s Brain residents who live Injury Commission to learn about gaps in services for brain with brain injury. injury survivors. “This is one more huge step in addressing the needs of people who have been on the waiting list for years,” says Nicky Osborne, Director of Brain Injury and Statewide Specialized Community Services for the Massachusetts Rehabilitation Commission. “BIA-MA has done a fantastic job in educating the various constituencies about brain injury. Senator Chandler has been a strong leader and advocate for the brain injury population and MRC appreciates her efforts.”
development The “Never Give Up Hockey Tournament” Raises Funds for Support Groups The Brain Injury Association of Massachusetts teamed up with TBI survivor Nancielee Holbrook and the Never Give Up Hockey Tournament to raise funds for survivors of brain injury. “I was an avid ice hockey player for years, and my team, the Bulldogs, came to support me,” says Nancielee. Nancielee’s experience with brain injury started when her nephew William was in a car accident in 2006 that left him with a severe traumatic brain injury (TBI) and in a neurorehabilitation facility for the indefinite future. Nancielee began donating blankets to individuals in rehab facilities to give them a “hug.” “The everyday part of your trying to survive is sometimes too much, and I wanted to do something for survivors that made them feel a ‘hug’ and that someone cared about them,” says Nancielee. “I’ve been on both sides of the fence—as the family member and the TBI survivor, so I know it can be difficult.” In 2009, Nancielee and a friend stopped by the side of the highway to help a disabled vehicle. A truck hit her car at 60 miles per hour, severely injuring both Nancielee and her friend—leaving both with TBIs. After leaving her job as an officer at the Mass Maritime Academy and feeling isolated unable to play the sport she loved, Nancielee’s Bulldog teammates decided to help her “never give up.” “Behind the scenes, my defense partner Sue Riley and teammates Wendy Pease and Paula Donahue came
up with a hockey tournament,” says Nancielee. “We had been talking about having people ‘never give up,’ and I knew that after they told me they were doing the tournament, I couldn’t give up. Even though the isolation of a brain injury and your everyday existence can be difficult, you can’t give up.” The Never Give Up Hockey Tournament hosted teams of 18 women in Level C and D divisions from Friday August 10 through Sunday August 12 at the Iorio Arena in Walpole. Each team’s entrance fee of $100 benefits brain injury survivors and support groups through the Brain Injury Association of Massachusetts. “This was our first year, so we started with small steps; each year we hope to grow the tournament and include youth and men’s divisions,” says Nancielee. “We’re hoping the Never Give Up Fund will let survivors know they are not alone, and fund activities to get survivors out into the world of the living and back into society.” “Once my injury happened, I saw the other side— the survivor’s side of things. My teammate Sue heard what I was going through, and she got it. She rallied our whole hockey team around making this tournament happen,” says Nancielee. “My whole team helped with this tournament. You always question what type of impact you have in your life and I never knew I affected them in that way. It’s humbling.”
Summer Races Bring Athletes Out for Brain Injury Awareness
Runners took to the race routes on behalf of brain injury awareness over July and August. The 5th Annual BJ Williams Road Race, held on Saturday July 14 in Longmeadow, MA, hosted its highest number of runners and walkers, for a total of 180 participants. More than 100 runners and 70 walkers battled high temperatures for the annual 5k race held at Wolf Swamp Fields. MIX 93.1 FM played music and served as the announcer for the race, while Kohl’s Corporation provided funds and volunteers for the event. Big Y served a barbeque lunch for participants. On August 12, four runners participated on “Team BIA-MA” for the 40th Annual Falmouth Road Race, raising a minimum of $1,000 per person for BIAMA. More than 75,000 spectators showed up to cheer on 11,000 runners for the seven-mile seaside course. Team BIA-MA was comprised of runners Lisa Egnitz, Courtney Farrell, Diane Gonet and BIA-MA’s Manager of Prevention Programs BJ Williams.
“Team Ryan,” pictured with BJ Williams, participated in the 5th Annual Road Race on behalf of TBI survivor Ryan Farrell.
All proceeds earned from the races go directly to BIA-MA and to enhancing prevention, education, support and advocacy for the brain injury community. These events raised more than $7,300 for BIA-MA. Thank you! To get involved with BIA-MA’s fundraising events, visit www.biama.org/fundraising.html or call (800) 242-0030.
our sincere thanks Bronze Level Corporate Sponsorships Law Office of Kenneth Kolpan, P.C. Vinfen
of Fitchburg The Schoeneck Family Camille Aubuchon Franklyn Bergen Anne Contois General Donations Carole Cushing Christine E. Anglehart Edmund Fitzgerald Peter Aschheim C. William Lasko Elijah and Amory Barnes Mary and J. Raymond Leger Berlin Fire Company Anita Mathieu Brain Injury Team at Braintree Nicholas and Frances Mercadante Rehab Hospital Geneva Orlando Carrie Butcher Cosmo and Jane Papa Charlestown High School Baseball Helen Robinson Community Health Charities Alan and Louise Rogers East Douglas Insurance Agency Norman and Jeanette Thibault Forestdale School Tara Gouin In Memory of Alvaro “Johnny” David Hanington Paolo Gretchen Helm Anthony Capraro Kiwanis Club of Natick Inc. Adele Cataldo Kenneth Kolpan Peter Fontanez Terri Krokos Linda Gullotti Laurie LeBlanc Nicole M. Maras Sean Lynch Lylette Vecchiarello Karen and Peter O’Donnell James Winskowicz Raynham Middle School Sandwich Lions Club In Memory of Edmund “Jim” Kaleena Scamman Wallace III Martha Schiff Edward Carrigan Paul and Merilyn Schreiber Jane E. Hauser Sky Bright Foundation Inc. George and Karen Oliver Patricia Slingluff Stanley and Catherine Souza Peter Stebbins Vinfen In Honor of Sal and Kitty Tulipano’s Mark Zak 50th Wedding Anniversary John Zakian Annette and John Benoit Kathleen and Frank D’Agostino In Memory of Theresa Finnerty Bernardo and Irma Didino Heritage Financial Services Michelle Grundy John Balian Family Diane and Aldo Guarino Steven Buttiglieri Carmela and Saverio Lafauci Joan Buttiglieri Maria and Carlo Libertini John and Kelly Fehlner Michael and Melissa Tulipano Heidi Harvey Jeffrey and Carolee Hodgdon 5th Annual BJ Williams Road Race Linda M. Larson Teresa Adam Steven and Barbara Perry Marissa Allen Jacquie and Al Rodgers Amber Alves Eric and Laura Souza Shirley Archambault Dan Barroso In Memory of Herbert Fruh Jonathan Beals Prudential Foundation Matching Denise Bissonnette Gifts- Philip Fruh Jennifer Blanchard Erin Bridge In Memory of Jason Moran Adam Caronna Past Presidents of the Rotary Club Taylor Carr
Mark Chmiel Amy Cichonski Janelle Comita-Prevoir Brett Cooley Alyssa Delude Katie Delude Christina Delude Louise Delude Ethan Douglas Susan Douglas Prescobb Shannon Duke Courtney Farrell Tony Farrell Mary Ellen Farrell Ryan Farrell Steve Feinstein Stephanie Flowers Jessica Francesconi Lisa Hermann Bill and Judy Hogan Crystle Jackson Theodore Kajdan Michael Kelley Jessica Kelly Jason Kiernan Kristen Koch Linda Lang-Gunn Steven Lang-Gunn Emily and Mary Laub Lisa Lauchart Peter LeBlanc Robert Lingenberg Jamie Marangoni Eric Marchacos Thomas Marsh Ryan McGoldrick Michelle McGuigan Deanna Morris Bridget Nichols Sarah O’Connor James O’Connor Christopher Ott Brendan Payne Natalie Piccin Emily Porter Renee Pouliot Shawn Prevoir Tim Rico Farah Rodriguez Elizabeth Roman Susan Saunders Stephen Saunders Rachel Schmidt Nicole Schneider Tyler Serafin Kayla Smachetti Pat Smith
Elina Stein William Sterritt Laura Sugermeyer Tracey Sugermeyer Steve Sugermeyer Sawyer Sullivan Lavanya Thiagarajan Steven Tolles Victoria Tran Betty Tran Andrea Trotochaud Norm Vernadakis Nickolas Vernadakis Amanda Vitko Anne Walczak Melissa Williams John Williams Matthew Wilson Jeremy Winn Cheri Woloski Timothy Wood Mark Zimkiewicz Falmouth Road Race John and Judith Baca Robert and Pamela Barbarini Renee Bastarache Anthony Belsito Joseph Bishop Robert and Lisa Boyes Dennis and Kelly Breen Phyllis Camarca William and Ann Carroll Jacqueline Clifford Community Cuts Steven Costa Thomas and Heidi Cross Richard and Margaret Cucchi Monica DeMelo Elizabeth and Thomas Donovan Dynamic Flowform Corp. John and Ann Early Lisa Egnitz Roberta Farrell Courtney Farrell Barbara and John Fleming Eleanor Forni Cheryl and Thomas Francesconi
Jessica Francesconi John Gonet Jennifer Gonet Diane Gonet James and Diane Grant Eric and Michelle Gray Carrie Gregoire Susan Halloran Andrea Harrison Kay Hoffman Hoffman Insurance Services Inc. Ronald and Megan Hovsepian Catherine Infascelli Steven Janko Karen Kratch Robert and Jane Kuchefski D and J Kulig Andrew and Mary Lou Kutchma Emily and Mary Laub Jenine and Scott Lawton Robin and David Loeffler Jonell Loeppert Stacey Lopes Victoria and Heidi Lospinuso Marist College Corrie Mercer Julie Miller Kenneth and Marilyn Mooradian Daniel and Joyce Nittolo Katelyn Post Courtney Rego Paddy and Erika Relihan Lazaro Rosa Nancy and Glenn Ross Tara and Scott Savitz Peter Shulman Julie Skipper Edward Sugermeyer Katie and Nora Sugermeyer Coreen Tosti Angela Venezia Paul Vigil Edward and Nancy Walsh Richard and Patricia Ward Loretta West BJ Williams Timothy Wood
To Donate to BIA-MA, use #35330 on your Pledge Card
news & events Special Thanks to All of Our 2012 Golf Classic Sponsors Grand Slam Institutional Cash Distributors Eagle Arbella Insurance Double Eagle Insurance Marketing Agencies Putting Green Sponsors Cerebral Palsy of Massachusetts Fallon Community Health Plan Nixon Peabody, LLP Contest and Prize Sponsor Richard M. Carr & Associates Beverage Cart Sponsor Nixon Peabody, LLP 19th Hole Welcome Sponsor BV Investment Partners, LLC Tee Sponsors AAA of Southern New England Adler Pollock & Sheehan, PC Avidia Bank Bonanno, Savino & Davies Cambridge Savings Bank FMG Financial Philadelphia Insurance Companies St. Mary’s Credit Union
Laura Herman Strohecker (right) of Insurance Marketing Agencies, and her teammates (from left to right) Brian Thomas, Bill Wilcox and Donald Donegan. Insurance Marketing Agencies sponsored a barbeque lunch at the Grill at the Turn.
Brain Injury Rehab We are proud to be the first rehab hospital in Massachusetts to earn The Joint Commission’s Gold Seal of Approval™ for acquired brain injury rehabilitation.
Former New England Patriots Running Back Patrick Pass poses with golfers during the 2012 Annual Golf Classic at Juniper Hill.
Twenty seven foursomes played at Juniper Hill Golf Course in Northborough on August 6. WHDH Meteorologist Jeremy Reiner welcomed players to dinner while the Radio Voice of the Bruins, Dave Goucher, emceed the live and silent auctions. “The annual golf tournament is a time when our community of supporters join us for a day of fun for a good cause,” says BIA-MA Director of Development Juliana Field. “The event raised more money than anticipated. Thank you to all the players and sponsors.”
We’re even prouder of what that means for our patients. With the latest in technology, and a team specializing in neurological trauma, Braintree Rehabilitation makes a difference in the life of every patient we treat.
DOUG KATZ, MD Acquired Brain Injury Program Medical Director
S U P E R I O R PAT I E N T O U TC O M E S
AT B R A I N T R E E
250 Pond Street Braintree, MA 02184
METROWEST MEDICAL CENTER 67 Union Street Natick, MA 01760
news & events Mark Your Calendars for These Upcoming BIA-MA Events “Tremendous Tenth” Annual BABIS Walk Saturday, October 13, 2012, 10 a.m. to 2 p.m. Jamaica Pond, Jamaica Plain, MA How to Communicate With Your Loved One A BIA-MA Workshop Thursday, October 18, 2012, 10 a.m. to Noon Best Western Royal Plaza, Marlborough, MA Reducing the Risk- Falls Prevention A BIA-MA Workshop Tuesday, October 23, 2012, 2-4 p.m. Best Western Royal Plaza, Marlborough, MA How You are Smart A BIA-MA Workshop Wednesday, November 7, 2012, 10 a.m. to Noon BIA-MA Westborough Office
For more information about these and other BIA-MA events, visit www.biama.org or call 1-800-242-0030.
BIA-MA Annual Pediatric Conference Thursday November 29, 2012 Best Western Royal Plaza, Marlborough, MA
Clinical Programs & Services • Post-Acute Skilled Nursing Facility
• Wound management
• Certified Brain Injury Specialists
• 24-hour Skilled Nursing
• Staff trained in Crisis Intervention
• On-staff Physician and Nurse Practitioners
• Behavior Specialists 7 days a week
• Tracheostomy and oxygen management
• Neuropsychiatry and Psychiatric services • Neuropsychological testing
• Physical, Occupational and Speech Therapy services
• Multitrauma rehab
• Dysphagia treatment
• Support and supervision from intensive supervision to community re-entry
• Physiatrist consults
• Life Skills Trainers work with rehab to retrain critical skills
• Family support
All insurances accepted.
www.neurorehabcenters.com A Wingate Healthcare Community
30 Lyman St., Suite 10 Westborough, MA 01581 Return Service Requested
NON-PROFIT ORG U.S. POSTAGE PAID Permit #233 Worcester, MA