The Sarah Jane Brain Foundation

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The Sarah Jane Brain Foundation (SJBF) is an advocacy organization in the field of pediatric acquired brain injury. The foundation was founded in New York City, in 2007, by Patrick Donohue, whose daughter, Sarah Jane, was violently shaken by her baby nurse when she was five days old, causing a severe brain injury. [1]

Contents

The mission of the Sarah Jane Brain Foundation is to advance knowledge of the brain, to prevent brain injury in childhood, and to care for those who suffer such injury. One of its primary goals is to fully fund and implement the National Pediatric Acquired Brain Injury Plan (PABI Plan), [2] which seeks to create a system of care accessible to all children and young adults with a pediatric acquired brain injury in the United States.

Founding

Sarah Jane Donohue was five days old when she was shaken violently by her baby nurse, resulting in two broken collarbones, four broken ribs and a traumatic brain injury resulting in the loss of more than 60% of the rear cortex of her brain. Her nurse pleaded guilty to child abuse and was sentenced to 10 years in prison, and her story captured the national media, including NBC’s Today Show, CNN, Good Morning America , two New York Post articles, New York Daily News , and The New York Times . [3]

After Sarah Jane’s injury, her father, Patrick Donohue, began laying the groundwork for what would become the Sarah Jane Brain Foundation by creating a website and posting Sarah Jane’s updates online for family and friends about her progress. [4] They received tens of thousands of messages and prayers for Sarah Jane from all over the world when the story became front page news.

With the goal of streamlining and standardizing the system of care for pediatric acquired brain injury in mind, Donohue not only posted his daughter’s records online, but soon moved on to Phase 2 of the Sarah Jane Brain Project: the establishment of a National Advisory Board of professional and family experts in the field of pediatric acquired brain injury. [5]

More than 75 of the SFJF's initial National Advisory Board members met in New York from January 8–10, 2009 to draft the National Pediatric Acquired Brain Injury Plan (National PABI Plan) to develop a seamless, standardized, evidence-based system of care, accessible for every family in the United States affected by this injury. The plan recognizes the multiple needs of these patients and families by designating seven categories of care: 1) Prevention 2) Acute Care 3) Reintegration 4) Adult Transition 5) Mild TBI 6) Rural/Telehealth and 7) The Virtual Center of Excellence.

Letter to President Obama

On January 20, 2009, Patrick Donohue sent the first letter to newly inaugurated President Barack Obama calling on him to address the leading cause of death and disability for children and young adults in the United States, Pediatric Acquired Brain Injury. In the letter, Donohue shared the story of his daughter Sarah Jane’s injury, outlined the need for a National Pediatric Acquired Brain Injury Plan, and asked the President and his administration for their cooperation in passing and implementing this plan.

Apple "Baby Shaker" app

In April 2009 a controversial app for the iPhone called “Baby Shaker" was released, and the same day discovered by Jennipher Dickens, a mother of a child who had been shaken at 7 weeks old by his then 21-year-old biological father. The child's mother later became a full-time volunteer for the Sarah Jane Brain Foundation. The app worked by shaking the iPhone until a pair of thick red Xs appeared over each eye of a baby drawn in black and white. [6] The app was added to and then pulled from Apple’s App Store after protests about the program's offensive nature. [7] Marilyn Barr, founder of the National Center of Shaken Baby Syndrome and board member of the Sarah Jane Brain Foundation’s Advisory Board commented “Not only are they making fun of Shaken Baby Syndrome but they are actually encouraging it. This is absolutely terrible.” Patrick Donohue sent an email of strong complaint to Apple’s CEO Steve Jobs and several Vice Presidents. [8] After initially offering no comment, Apple finally apologized and removed the app. [9]

The Sarah Jane Brain Foundation joined forces with Prevent Child Abuse America, the National Center on Shaken Baby Syndrome and two of America’s leading doctors who are experts in the prevention of Abusive Head Trauma (Shaken Baby Syndrome) and announced a joint effort with Soma Creates, a developer of iPhone based toys, to create applications to prevent Shaken Baby Syndrome. [10]

American PABI Heroes Tour

The American PABI Heroes Tour was a 12-city, 11,000 mile nationwide tour to raise awareness for Pediatric Acquired Brain Injury and promote local philanthropy through music. In most of the cities, a panel of experts about PABI were assembled to discuss the challenges for families and professionals and in most of the cities local musicians competed. One winner was chosen from each city to participate in the Grand Finale at Webster Hall in New York City. The tour was hosted by recording artist KRISTY KAY , recording artist, musician and the voice of Barbie. At the Finale ZC Flawless a Drum Line from Chicago, IL was declared the winner of the 2009 American PABI Heroes Tour. [11]

Introduction of HCR 198

On October 13, 2009, United States Representative G.K. Butterfield (NC-1), along with over 40 bi-partisan original co-sponsors, introduced H. Con. Res. 198 [12] during the 111th Congress. In this resolution, Congress endorses the National Pediatric Acquired Brain Injury Plan (PABI Plan) as the best plan to prevent, identify and treat all acquired brain injuries from birth until 25 years of age and encourages federal, state and local governments to implement it. The non-binding Resolution eventually secured more than 110 co-sponsors from both parties and across the nation, creating a broad base of support for the National Pediatric Acquired Brain Injury Plan Act, which was introduced in July 2011.

Zackery Lystedt Brain Project

Zackery Lystedt is a former youth football player who, in 2006, spent 31 days in a coma following a brain injury sustained during a middle school football game. Lystedt, then 13, returned to the field after banging his helmet hard on the ground, and collapsed into his father’s arms following the game as a result of his injuries. Lystedt spent the next month in a coma, and was unable to speak for nine months, unable to move for thirteen months. Lystedt’s story inspired Washington state lawmakers to enact legislation in his name protecting student-athletes from repeated brain trauma. [13]

SJBF founder, Patrick Donohue, testified at the U.S. House of Representatives Committee on the Judiciary hearing entitled “Head and Other Injuries in Youth, High School, College and Professional Football” on Monday, February 1, 2010, in Houston, Texas. He described the upcoming Super Bowl week announcement about the Zackery Lystedt Brain Project. [14]

The Zackery Lystedt Brain Project was announced at the University of Miami Miller School of Medicine on February 3, 2010. The Zackery Lystedt Brain Project is a joint initiative between the American College of Sports Medicine and the Sarah Jane Brain Foundation which advocates for the passage of youth sports concussion legislation in all 50 states to protect student-athletes from concussions and other brain injuries during training, practice and competition. [15] [16] [17] State bills are expected to be modeled after Washington’s “Zack Lystedt Law” which mandates the removal from play for any athlete suspected of a concussion during play, with medical clearance needed before an athlete is able to return to play, as well as provides education and treatment guidelines for coaches, athletic trainers, players and parents. To date, 49 states have passed such legislation [18]

Sarah Jane's visit to the White House

Sarah Jane Donohue, her father, and other members of the SJBF International Advisory Board, discussed Sarah Jane's letter to President Barack Obama at an early-afternoon press conference on Monday, July 26, 2010. The letter was later hand-delivered to President Obama at the 20th Anniversary of the Americans with Disabilities Act celebration at a White House celebration held that evening. [19] The letter proposed a White House Summit hosted by President Obama to begin implementing the National Pediatric Acquired Brain Injury Plan and asked the President for his support of H. Con. Res. 198.

National PABI Plan Tour

The Sarah Jane Brain Foundation launched the “2011 National Pediatric Brain Injury Plan Tour” during NHL All Star Weekend in North Carolina with a presentation about the PABI Plan at East Carolina University. This was the first of over 70 events in a six-month tour that covered over 30 states. The tour sponsored by Easton-Bell Sports, [20] focused on two types of presentations. The first was a presentation for high school students which focused on sports concussions. The second type of presentation focused around the PABI Plan and was intended for people in the medical profession.

Introduction of PABI Plan Act (HR 2600)

On July 20, 2011, the National Pediatric Acquired Brain Injury Plan Act (National PABI Plan Act) was introduced to Congress as HR 2600 by Rep. Leonard Lance (R, NJ-7) with 50 original bi-partisan co-sponsors. [21] The bill would provide $2.9 billion in federal funding across all 52 PABI Plan-designated State Lead Centers to implement the PABI Plan over the course of seven years. All funds would be drawn from the discretionary budget of the Department of Health and Human Services, thereby adding no additional monies to the national debt.

The legislation has more than 110 co-sponsors, including conservative members of Congress such as Rep. Mike Pence (R-IN) [22] as well as the liberal members such as Rep. Tammy Baldwin, D-WI [23]

Additionally, more than 35 professional and advocacy organizations have endorsed and/or provided letters of support for the legislation including many national sports organizations. This was announced on March 1, 2012, during a press conference with Rep. Lance. [24]

The legislation has also garnered editorial support from The South Bend Tribune, [25] Ventura County (CA) Star, [26] and The Spokesman-Review [27] of Spokane, WA, as well as a published op-ed in the Milford (MA) Daily News [27] and coverage by the Deseret News, Utah’s oldest daily newspaper. [28]

The International Academy of Hope (iHOPE)

The International Academy of Hope – NYC (iHOPE-NYC) is a highly specialized brain injury school in New York City founded by Patrick Donohue in September 2013. [29]

Related Research Articles

<span class="mw-page-title-main">Head injury</span> Serious trauma to the cranium

A head injury is any injury that results in trauma to the skull or brain. The terms traumatic brain injury and head injury are often used interchangeably in the medical literature. Because head injuries cover such a broad scope of injuries, there are many causes—including accidents, falls, physical assault, or traffic accidents—that can cause head injuries.

<span class="mw-page-title-main">Shaken baby syndrome</span> Medical condition

Shaken baby syndrome (SBS), also known as abusive head trauma (AHT), is a medical condition in children younger than five years old, generally caused by blunt trauma, vigorous shaking, or a combination of both. The concept is controversial and remains scientifically disputed.

<span class="mw-page-title-main">Concussion</span> Medical condition

A concussion, also known as a mild traumatic brain injury (mTBI), is a head injury that temporarily affects brain functioning. Symptoms may include loss of consciousness; memory loss; headaches; difficulty with thinking, concentration, or balance; nausea; blurred vision; dizziness; sleep disturbances, and mood changes. Any of these symptoms may begin immediately, or appear days after the injury. Concussion should be suspected if a person indirectly or directly hits their head and experiences any of the symptoms of concussion. Symptoms of a concussion may be delayed by 1–2 days after the accident. It is not unusual for symptoms to last 2 weeks in adults and 4 weeks in children. Fewer than 10% of sports-related concussions among children are associated with loss of consciousness.

Hypotonia is a state of low muscle tone, often involving reduced muscle strength. Hypotonia is not a specific medical disorder, but a potential manifestation of many different diseases and disorders that affect motor nerve control by the brain or muscle strength. Hypotonia is a lack of resistance to passive movement, whereas muscle weakness results in impaired active movement. Central hypotonia originates from the central nervous system, while peripheral hypotonia is related to problems within the spinal cord, peripheral nerves and/or skeletal muscles. Severe hypotonia in infancy is commonly known as floppy baby syndrome. Recognizing hypotonia, even in early infancy, is usually relatively straightforward, but diagnosing the underlying cause can be difficult and often unsuccessful. The long-term effects of hypotonia on a child's development and later life depend primarily on the severity of the muscle weakness and the nature of the cause. Some disorders have a specific treatment but the principal treatment for most hypotonia of idiopathic or neurologic cause is physical therapy and/or occupational therapy for remediation.

<span class="mw-page-title-main">Traumatic brain injury</span> Injury of the brain from an external source

A traumatic brain injury (TBI), also known as an intracranial injury, is an injury to the brain caused by an external force. TBI can be classified based on severity ranging from mild traumatic brain injury (mTBI/concussion) to severe traumatic brain injury. TBI can also be characterized based on mechanism or other features. Head injury is a broader category that may involve damage to other structures such as the scalp and skull. TBI can result in physical, cognitive, social, emotional and behavioral symptoms, and outcomes can range from complete recovery to permanent disability or death.

<span class="mw-page-title-main">Pediatric nursing</span> Nursing involving children

Pediatric nursing is part of the nursing profession, specifically revolving around the care of neonates and children up to adolescence. The word, pediatrics, comes from the Greek words 'paedia' (child) and 'iatrike' (physician). 'Paediatrics' is the British/Australian spelling, while 'pediatrics' is the American spelling.

Post-concussion syndrome (PCS), also known as persisting symptoms after concussion, is a set of symptoms that may continue for weeks, months, or years after a concussion. PCS is medically classified as a mild traumatic brain injury (TBI). About 35% of people with concussion experience persistent or prolonged symptoms 3 to 6 months after injury. Prolonged concussion is defined as having concussion symptoms for over four weeks following the first accident in youth and for weeks or months in adults.

<span class="mw-page-title-main">Chronic traumatic encephalopathy</span> Neurodegenerative disease caused by head injury

Chronic traumatic encephalopathy (CTE) is a neurodegenerative disease linked to repeated trauma to the head. The encephalopathy symptoms can include behavioral problems, mood problems, and problems with thinking. The disease often gets worse over time and can result in dementia.

<span class="mw-page-title-main">Morgan Stanley Children's Hospital</span> Hospital in New York, United States

Morgan Stanley Children's Hospital of NewYork-Presbyterian is a women's and children's hospital at 3959 Broadway, near West 165th Street, in the Washington Heights neighborhood of Manhattan, New York City. It is a part of NewYork-Presbyterian Hospital and the Columbia University Irving Medical Center. The hospital treats patients aged 0–21 from New York City and around the world. The hospital features a dedicated regional ACS designated pediatric Level 1 Trauma Center and is named after financial firm Morgan Stanley, which largely funded its construction through philanthropy.

Second-impact syndrome (SIS) occurs when the brain swells rapidly, and catastrophically, after a person has a second concussion before symptoms from an earlier one have subsided. This second blow may occur minutes, days, or weeks after an initial concussion, and even the mildest grade of concussion can lead to second impact syndrome. The condition is often fatal, and almost everyone who is not killed is severely disabled. The cause of SIS is uncertain, but it is thought that the brain's arterioles lose their ability to regulate their diameter, and therefore lose control over cerebral blood flow, causing massive cerebral edema.

<span class="mw-page-title-main">Coup contrecoup injury</span> Type of head injury

In head injury, a coup injury occurs under the site of impact with an object, and a contrecoup injury occurs on the side opposite the area that was hit. Coup and contrecoup injuries are associated with cerebral contusions, a type of traumatic brain injury in which the brain is bruised. Coup and contrecoup injuries can occur individually or together. When a moving object impacts the stationary head, coup injuries are typical, while contrecoup injuries are produced when the moving head strikes a stationary object.

Concussion grading systems are sets of criteria used in sports medicine to determine the severity, or grade, of a concussion, the mildest form of traumatic brain injury. At least 16 such systems exist, and there is little agreement among professionals about which is the best to use. Several of the systems use loss of consciousness and amnesia as the primary determinants of the severity of the concussion.

Pediatric neuropsychology is a sub-speciality within the field of clinical neuropsychology that studies the relationship between brain health and behaviour in children. Many pediatric neuropsychologists are involved in teaching, research, supervision, and training of undergraduate and graduate students in the field.

Submissions for mobile apps for iOS are subject to approval by Apple's App Review team, as outlined in the SDK agreement, for basic reliability testing and other analysis, before being published on the App Store. Applications may still be distributed ad hoc if they are rejected, by the author manually submitting a request to Apple to license the application to individual iPhones, although Apple may withdraw the ability for authors to do this at a later date.

<span class="mw-page-title-main">Childhood acquired brain injury</span> Medical condition

Childhood acquired brain injury (ABI) is the term given to any injury to the brain that occurs during childhood but after birth and the immediate neonatal period. It excludes injuries sustained as a result of genetic or congenital disorder. It also excludes those resulting from birth traumas such as hypoxia or conditions such as foetal alcohol syndrome. It encompasses both traumatic and non-traumatic injuries.

A traumatic brain injury (TBI) is a blow, jolt or penetration to the head that disrupts the function of the brain. Most TBIs are caused by falls, jumps, motor vehicle traffic crashes, being struck by a person or a blunt object, and assault. Student-athletes may be put at risk in school sports, creating concern about concussions and brain injury. A concussion can be caused by a direct blow to the head, or an indirect blow to the body that causes reactions in the brain. The result of a concussion is neurological impairment that may resolve spontaneously but may also have long-term consequences.

Arthur Norman Guthkelch was a British pediatric neurosurgeon. He is sometimes known as the first British pediatric neurosurgeon. He was the first physician to make a connection between shaking an infant and subsequent brain injury.

<span class="mw-page-title-main">Waney Squier</span> British neuropathologist

Waney Squier is a neuropathologist specialising in the brain of the developing foetus and neonate. She has written a book on acquired damage to the developing brain and is senior author on peer-reviewed publications ranging in topic from fetal to childhood infection, polymicrogyria, hydrocephalus, head trauma and mimics of trauma caused by vascular pathology. She is an expert on dura mater and dural bleeding.

Marta Cecilia CohenOBE is a clinical pediatric pathologist, and currently head of the Department of Histopathology and Clinical Director of Pharmacy, Pathology, and Genetics at Sheffield Children's Hospital, and an honorary professor at the University of Sheffield. Her clinical work focusses on sudden infant death.

A pediatric concussion, also known as pediatric mild traumatic brain injury (mTBI), is a head trauma that impacts the brain capacity. Concussion can affect functional, emotional, cognitive and physical factors and can occur in people of all ages. Symptoms following after the concussion vary and may include confusion, disorientation, lightheadedness, nausea, vomiting, blurred vision, loss of consciousness (LOC) and environment sensitivity. Concussion symptoms may vary based on the type, severity and location of the head injury. Concussion symptoms in infants, children, and adolescents often appear immediately after the injury, however, some symptoms may arise multiple days following the injury leading to a concussion. The majority of pediatric patients recover from the symptoms within one month following the injury. 10-30% of children and adolescents have a higher risk of a delayed recovery or of experiencing concussion symptoms that are persisting.

References

  1. ↑ Pete Donohue & Caitlin Kelly (28 Aug 2005). "Scandal of baby nurses". New York Daily News.
  2. ↑ "The National Pediatric Acquired Brain Injury Plan". Thebrainproject.org.
  3. ↑ Anemona Hartocollis (27 Oct 2006). "Nurse Who Shook Baby, Causing Brain Damage, Is Sent to Prison". The New York Times .
  4. ↑ "The Sarah Jane Brain Project". Thebrainproject.org.
  5. ↑ Thomas Adcock. "Nonprofit Seeks to Support, Unite Families of Brain-Injured". New York Law Journal.
  6. ↑ "Apple removes Baby Shaker game". BBC News. April 24, 2009.
  7. ↑ "'Baby Shaker' app pulled from iPhone store". NBC News. Archived from the original on November 30, 2014.
  8. ↑ "Baby Shaking App and Apple's Bad Designing [UPDATED]". CBS News. 23 April 2009.
  9. ↑ "Apple apologizes for Baby Shaker". Articles.cnn.com. 24 April 2009. Archived from the original on July 7, 2012.
  10. ↑ "Soma Creates". Somacreates.com.
  11. ↑ "Brain Injury Lawyer: 15-City National Demonstration Targets Apple's Rotten Core & AT&T's Ineptitude". www.braininjurylawblog.com. Archived from the original on 21 July 2012. Retrieved 3 February 2022.
  12. ↑ "Library of Congress". Congress.gov. Retrieved 27 June 2019.
  13. ↑ "Seattle-area teen helps NFL, others see dangers in concussions from football". Chicago Tribune . October 17, 2010.
  14. ↑ "House Judiciary Committee member rips college conference concussion standards". Espn.com. February 2010.
  15. ↑ Schwarz, Alan (January 31, 2010). "States Taking the Lead Addressing Concussions". The New York Times .
  16. ↑ "Columns". Cbssports.com.
  17. ↑ "Concussions: Common sense and a conservative approach are the wise choice, especially in dealing with young athletes". Espn.com. 4 February 2010.
  18. ↑ "NFL Health Playbook". Nflhealthandsafety.com.
  19. ↑ "NBCNews.com Video Player". NBC News. Archived from the original on January 29, 2013.
  20. ↑ "Easton-Bell Sports Announces Support of Sarah Jane Brain Foundation | Riddell". www.riddell.com. Archived from the original on 1 July 2011. Retrieved 14 January 2022.
  21. ↑ "H.R.2600: National Pediatric Acquired Brain Injury Plan Act of 2011 – U.S. Congress". Opencongress.org.
  22. ↑ Justin Quinn. "Mike Pence – A Bio of Indiana Congressman Mike Pence". Usconservativesabout.com.
  23. ↑ "Most Liberal Members of Congress - Carrie Mihalcik - NationalJournal.com". Archived from the original on 2011-09-25. Retrieved 2018-04-29.
  24. ↑ "Pop Warner Joins National Sports Organizations to Endorse HR 2600". www.popwarner.com. Archived from the original on 4 May 2012. Retrieved 14 January 2022.
  25. ↑ "A major step in solving mystery of brain injury". Articles.southbendtribune.com.
  26. ↑ "Editorial: Putting politics aside for a law on brain injuries". Vcstar.com.
  27. 1 2 "Editorial: Brain injury bill offers crucial parts of solution – Spokesman.com – Dec. 30, 2011". Spokesman.com.
  28. ↑ Lois M. Collins (26 February 2012). "TBI crisis: As evidence mounts of effects of brain injuries on children, financing lags and Congress considers a bill". Deseretnews.com. Archived from the original on February 28, 2012.
  29. ↑ "The International Academy of Hope NYC". Ihopenyc.org. 2014.
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