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Joanne Susi

"My life is separated into before and after. Before, I was a Senior Clinical Research Associate assisting in clinical trails with CAP working with Dana Farber, Tufts, Johns Hopkins, and others in Cancer research. Now I am a survivor and lucky to be alive". Read Kristin's story

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Advocacy at the Federal Level

On March 22nd, the Brain Injury Association of America (BIAA) will be holding a Brain Injury Awareness day on Capitol Hill.  Please invite your Senators and Representative to attend the Congressional Reception, Recognizing Brain Injury Awareness Month, Rayburn Gold Room 2168, 5:00 PM - 7:00 PM. 
Click here to find my members of Congress

BIA-MA asks for your support for a number of issues at the federal level, please also contact your Senators and Representatives to support the following items.
Increase TBI Act Funding

The Traumatic Brain Injury (TBI) Act, as amended, authorizes the Administration for Community Living (ACL) to issue competitive grants to states to develop, change, or enhance community-based service delivery systems that include timely access to comprehensive, appropriate services and support. The program, known as the TBI State Grant Program, is conducted by the Independent Living Administration within the Administration on Disabilities (AoD). Massachusetts is one of only 18 states that receive grants.  

The TBI Act also authorizes ACL to make grants to each state’s Protection and Advocacy (P&A) System to provide individual and family advocacy, legal representation, and specific assistance in self-advocacy.

Collectively, the State Grant Program and the Protection & Advocacy Grant Program are known as the Federal TBI Program. The program is significantly under-funded. BIA-MA calls on Congress to:

  • Appropriate $17 million to fund the Federal TBI Program;
  • Allocate an additional $5 million for the TBI State Grant Program to increase the number of states and territories able to participate; and
  • Allocate $3 million total to the P&A Grant Program.

 Fund CDC TBI Programs
The Traumatic Brain Injury (TBI) Act of 1996, as amended, authorizes the Centers for Disease Control and Prevention (CDC) to collect data on the incidence and prevalence of TBI and to conduct public education and research programs to prevent TBIs and help people recognize, respond, and rehabilitate if a brain injury occurs. BIA-MA calls on Congress to:

  • Appropriate $10 million to fund CDC’s TBI programs as authorized by the TBI Act which includes a mandate to review the scientific evidence related to brain injury management in children;
  • Appropriate $5 million to the CDC to fully implement the National Concussion Surveillance System, which would provide representative incidence estimates of all TBI, sports-and-recreation-related TBI, and TBI-related disability as well as the ability to monitor trends over time including at the state level;
  • Appropriate $5 million to fully fund the Neurological Condition Surveillance System. The 21st Century Cures Act of 2016, authorizes the Secretary of the U.S. Department of Health and Human Services to improve the collection of information on the incidence and prevalence of neurological diseases and conditions, which may be through the establishment of a disease registry.

Fully Fund the TBI Model of Care
The TBI Model Systems of Care are a collection of 16 research centers that conduct disability and rehabilitation research under grants administered by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) of the Administration for Community Living. The Massachusetts model is the Spaulding/Partners Traumatic Brain Injury Model System at Harvard Medical School.   The TBI Model Systems are the only source of non-proprietary longitudinal data on what happens to people with brain injury. They are a key source of evidence-based medicine.

BIA-MA calls on Congress to increase funding in FY2018 for NIDILRR’s TBI Model Systems of Care program to add one new collaborative research project and increase the number of centers from 16 to 18. Over the next five years, Congress should increase funding by $15 million to expand the TBI Model Systems program:

  • Increase the number of multicenter TBI Model Systems collaborative research projects from one to three, each with an annual budget of $1.0 million;
  • Increase the number of competitively funded centers from 16 to 18 while increasing the per center support by $200,000; and
  • Increase funding for the National Data and Statistical Center by $100,000 annually to allow all participants to be followed over their lifetimes.

Take a Stand to Protect Student Athletes from Concussions

The Centers for Disease Control and Prevention (CDC) estimates as many as 3.8 million concussions related to sports and recreation occur each year. In far too many instances, high school athletes are returning to the field before their brains have an opportunity to heal from a previous concussion. A repeat concussion can slow recovery and increase the likelihood of having long-term challenges. Repeat concussions can result in second impact syndrome, which can lead to permanent brain damage and even death.

BIAA urges Congress to take these steps:

  • Support the Youth Sports Safety Concussion Act --to help ensure safety standards for sports equipment, including football helmets, are based on the latest science and curb false advertising claims.
  • Support the Concussion Research and Education Act of 2017 to implement recommendations of the National Academies of Medicine in its report, “Sports-Related Concussions in Youth: Improving the Science, Changing the Culture.”
  • Appropriate $5 million to the CDC to fully implement the National Concussion Surveillance System to provide representative incidence estimates of all TBI, sports- and recreation-related TBI, and TBI-related disability as well as the ability to monitor trends over time including at the state level.

For more information about Advocacy at BIA-MA, contact Kelly Buttiglieri at 508-475-0032 or