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Joanne Susi

"I was suddenly unable to do the things I once injoyed, struggling to come to terms with my injury, frustrated and angry”

Bob's life changed completely in 2013 when he fell two stories while shrink wrapping a boat at the marina where he worked. With the help of his family and BIA-MA,he has found ways to enjoy most of the things he used to, just a little differently. Click here to support BIA-MA efforts in creating better futures for those affected by brain injury.

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Advocacy at the Federal Level

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
In October 2015, the TBI State Grant Program Act, was transferred to the ACL Administration on Disabilities Independent Living Administration, and the Protection & Advocacy (P & A) Grant Program was moved to the ACL Administration on Intellectual and Developmental Disabilities.  Massachusetts is one of only 19 states that receive TBI State grants and all the P&A grants are severely underfunded. 

BIA-MA calls on Congress to:

  • Appropriate $19 million to fund the Federal TBI Program to increase the number of state grants;
  • 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) for data collection, prevention, public education and research. 

BIA-MA calls on Congress to:

  • Support CDC in its mandate to review the scientific evidence related to brain injury management in children and identify opportunities for research;
  • Support TBI national surveillance; and
  • Appropriate $10 million to fund CDC’s TBI programs.

Fully Fund the TBI Model of Care 
The TBI Model Systems of Care are a collection of 16 research centers located across the United States 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 and serve as a proving ground for future researches.  TBI Model Systems sites work closely with the Department of Veterans Affairs on research to improve the treatment of returning service members with brain injuries.

BIA-MA calls on Congress

  • Increase funding in FY2019 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, Congressional Brain Injury Task Force requests 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 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.
  • Provide “line-item” status to the TBI Model Systems within the broader NIDILRR budget.
  • Increase funding for life saving medical research on TBI at the National Institutes of Health (NIH) and the Department of Defense.
  • Oppose the suggested move of NIDILRR to the NIH and the decrease of funding as proposed in the President’s FY 19 budget.

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 sponsored by Rep. Bill Pascrell, Jr. (D-NJ) and Sen. Tom Udall (D. N.M.), 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, sponsored by Rep. Joyce Beatty (D-Ohio) to implement recommendations of the Institute of Medicine, “Sports-Related Concussions in Youth: Improving the Science, Changing the Culture.”
  • Support the outstanding budget request for $5 million for the CDC to take to scale the National Concussion Surveillance System, which would provide nationally 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