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Thank you for visiting iBRAIN’s website. As the Founder of iBRAIN, I wanted to share with you my journey with Sarah Jane and our vision for changing the world for hundreds of millions of families across the country and around the planet working to prevent, identify, treat and eventually cure brain injury and brain-based disorders.
As you may know, Sarah Jane was born happy and healthy on June 5, 2005. When she was only five days old, the baby nurse we hired to assist us violently shook her in the middle of the night, breaking four ribs, both collarbones and causing a severe brain injury due to Abusive Head Trauma, otherwise known as Shaken Baby Syndrome. She spent the next month in the hospital undergoing evaluations, however, due to the limited understanding of neuroscience, let alone pediatric brains, there was very little that could be done except to wait! While she is 18-years old today, she is still unable to walk on her own or speak words ... but she will ... my job as her father is to change the world for her ... For more information about Sarah Jane's early experiences, please visit: https://thebrainproject.org/sarah-janes-story/
The Monster who shook Sarah Jane was arrested and eventually plead guilty and went to prison. However, in an effort to identify other victims, the Manhattan District Attorney's office asked if we would be willing to go public about Sarah Jane's story. We agreed and on August 22, 2005, the New York Daily News ran a front-page story about Sarah Jane. From that date forward, Sarah Jane became one of the most documented and recognized survivors of pediatric brain injury in the world. There were additional front-page stories in the New York Post, New York Times and Sarah Jane made her first appearance on The TODAY Show the following day on August 23, 2005, (see video here: https://www.youtube.com/watch?v=4orQo9_rVhA). With all of the prayers and good wishes we were receiving from Jamaica, Queens to Kingston, Jamaica to Tokyo, Japan, we set up a website as a place for people to follow Sarah Jane's story, www.TheBrainProject.org.
After a year of taking care of Sarah Jane as a single father (unfortunately as is all-too-common, the trauma broke up our family and I retained sole custody), I began to research all I could in regards to brain injury and neuroscience. It became clear to me with all of the experts I contacted and all I read, we only know about 5% of what we will eventually know about the brain (never mind a developing brain in a child) and the systems of care and research were all operating in silos.
These efforts culminated in the launch of The Sarah Jane Brain Foundation (SJBF) on October 24, 2007 (see New York Daily News article: https://www.nydailynews.com/2007/10/24/father-launches-website-about-shaken-babys-brain-damage/). The Sarah Jane Brain Project was launched with Sarah Jane being the first person in human history to have all of her medical information in an open-source format, to build off of other open-source "shared-knowledge" initiatives, like the Human Genome Project. Sarah Jane returned to The TODAY Show with me to announce the launch of SJBF on November 25, 2008, (see video here: https://www.youtube.com/watch?v=2ybrEJD6MOY).
Over the next year, SJBF's International Advisory Board grew and over 75 gathered in New York City from January 8-10, 2009, to analyze the current status of care for Pediatric Acquired Brain Injury, identify the problems along the continuum and propose solutions. As a result of this effort, the first-ever National Pediatric Acquired Brain Injury Plan (PABI Plan) was drafted and made public. The experts who developed the PABI Plan included physicians, allied health care professionals, educators, and parents. While many components of the PABI Plan exists, the consistent availability, coordination and integration of the numerous well-established interventions, programs, and supports do not exist at the present time on a national level. The PABI Plan develops a seamless, standardized, evidence-based system of care universally accessible for all children/young adults and their families regardless of where they live in the nation. To review the entire PABI Plan please see: https://thebrainproject.org/the-pabi-plan/.
In fact, the first letter sent to President Barack Obama at 12:01 p.m. on the day of his Inauguration, was my letter to him introducing the PABI Plan (see https://thebrainproject.org/letter-to-president-obama/). This began an extensive national lobbying effort with meetings at The White House and throughout the Halls of Congress. On October 13, 2009, United States Representative G.K. Butterfield (NC-1), alongside over 40 bi-partisan original co-sponsors, introduced H. Con. Res. 198 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. Unfortunately, politics interfered with the Resolution getting an opportunity for an actual vote (that story will be told another time).
We built on the success in the 111th Congress and 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. 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 budgets of seven different federal Departments, thereby adding no additional monies to the national debt.
The legislation had more than 110 co-sponsors, including conservative members of Congress such as Rep. Mike Pence (R-IN), who eventually became Vice President of the United States, as well as the liberal members such as Rep. Tammy Baldwin (D-WI), who eventually became a United States Senator from Wisconsin. While the legislation was the most bi-partisan bill in the 112th Congress (other than a commemorative stamp resolution), neither the U.S. Senate nor the White House took any action to advance it and it never moved forward.
While my advocacy about The PABI Plan was taking me around the world, days, months and years were going by and I wasn't having a direct impact on Sarah Jane. By 2013, Sarah Jane had graduated from New York University's Rusk Preschool program (which subsequently closed) and was enrolled in a pleasant and safe private school program. However, there was very little innovation occurring.
In an effort to begin having a direct impact on Sarah Jane and other New York City students with severe brain injuries and brain-based disorders, SJBF launched a private school program out of my living room in Washington Heights in Manhattan (near Columbia University) with six students. Eventually, Sarah Jane's previous private school folded into this new program and we began growing it out of its 10,000 square feet location in Harlem. By the 2017-2018 school year, the private school grew to about 50 students and its success actually caused problems with the leadership of the organization (that story of greed will be told another time). See New York Post story about my efforts: https://nypost.com/2014/06/09/superdads-tireless-quest-to-help-his-daughter/.
As an attorney, I initially handled all of the legal advocacy for the families myself, on a pro-bono basis (i.e., the families were not charged for the legal work). As the number of families grew, it became too much for me to handle on my own, so I established a non-profit law firm, Brain Injury Rights Group (BIRG). BIRG has now grown into a national legal advocacy organization with full-time attorneys covering the following states: CT, NY, NJ, MD, DC, VA, FL, MI, IL, CO and CA (for more info on BIRG see www.BrainInjuryRights.org).
In June 2018, I launched iBRAIN, as a new special education program. It began with more than 30 students who had attended the original school program I had created. I describe iBRAIN as a four-legged stool: 1) International Academy for the Brain (iBRAIN-Academy), 2) International Center for the Brain (iBRAIN-Center), 3) International Institute for the Brain (iBRAIN-Institute) and 4) International Network for the Brain (iBRAIN-Network).
The International Academy for the Brain, iBRAIN-Academy, is the largest school-based program in the country serving non-verbal and non-ambulatory students with brain injuries or brain-based disorders. iBRAIN-Academy originally serviced students aged 5-21 in the New York City metropolitan area but has now expanded to service pre-school students as well. We have also expanded outside of the New York City area with its recent launch in Washington, DC, serving the MD-DC-VA metro area. We anticipate adding iBRAIN-Academies around the country and eventually around the world.
All of our current students attend small classroom settings (6:1:1 or 8:1:1, teacher-student-teacher assistant ratio) and they receive anywhere from 15-20 hours of related services each week, depending on their individual needs. For example, all of our students receive Physical Therapy, Occupational Therapy and Speech-language Therapy. Many of our students have cortical visual impairments (CVI) therefore they receive Vision Education Services and most benefit from Music Therapy and Assistive Technology Services too. Most of the therapies are provided in 60-minute durations to allow for proper transitioning, periodic rest periods and repetition of purposeful tasks to enhance neuroplasticity. All of our students have a 1:1 full-time paraprofessional to attend to their individual needs and some of our students have a 1:1 full-time nurse due to their unique medical conditions.
The program was designed around a single, working mother with two other children. The only out-of-pocket expense to attend iBRAIN is a refundable $100 deposit (all other costs are suspended while securing funding from the Department of Education).
One of the biggest challenges of families who have children with special needs within New York City (and around the country) is their special transportation needs. The Office of Pupil Transportation (OPT) within the New York City Department of Education has been riddled with corruption and incompetence for many years. Here are just a few public examples, https://www.nbcnewyork.com/news/local/crime-and-courts/former-top-nyc-school-official-charged-with-corruption-in-alleged-bribery-scheme/3298720/, https://nypost.com/2020/10/10/nyc-schools-watchdog-ignored-bus-driver-safety-issues-lawsuit/, and
OPT has a difficult time transporting typically-developing students, never mind students who require a wheelchair lift, air-conditioning, limited travel time and a 1-1 travel paraprofessional or nurse! These are some of the many reasons when I launched iBRAIN, I asked my wife, Gina, to create a private transportation company to service the students who attend iBRAIN and eventually others as well who have very specialized transportation needs that a regular school program cannot serve. She agreed and named it after Sarah Jane and her sister, Sisters Travel and Transportation Services, LLC!
The vision for the International Center for the Brain, iBRAIN-Center, will eventually serve as a Rehabilitation Center, similar to other world-class centers like Kessler Institute in NJ, Burke Rehabilitation in Westchester, Rehab Institute of Chicago in Chicago. iBRAIN-Center is currently in its development stages with more details forthcoming.
The International Institute for the Brain, iBRAIN-Institute, is the non-profit, research-focused organization designed to take the work that is being done within the iBRAIN-Academy, eventually done within the iBRAIN-Center, and stand-alone research initiatives. As an organization, iBRAIN is focused on changing the world for millions. In order to achieve this ambitious goal, we need to collect the data, validate the data, publish the results and disseminate the results. That is what iBRAIN-Institute is all about! If you know someone who would like to make a donation to iBRAIN-Institute, here is the link: Donate Now . Here is the link to iBRAIN-Institute's 990s for your review: IBrain Institute 990 2021-2018
The International Network for the Brain, iBRAIN-Network, will be all of our projects and programs that fall outside the iBRAIN-Academy, iBRAIN-Center, and iBRAIN-Institute. For example, we are working on developing programs that will hire adults with developmental disabilities, since we know the jobless rate for those with a disability are about twice as high as those without a disability.
We hope you will join us on this journey to change the world, whether as a volunteer, donor, employee or by simply following us on social media.
All the best,
Patrick B. Donohue, JD, MBA
Sarah Jane’s Dad
Founder & Chairman, iBRAIN
Founder & Chairman, Brain Injury Rights Group
P.S. At the beginning of this journey with Sarah Jane, I was introduced to a wonderful story by Emily Perl Kingsley, which I’d like to share with you below,
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
We invite you to consider our program. Join with other families who are committed to giving their children with brain injury or brain-based disorders access to the common core curriculum through a collaborative and multi-disciplinary approach.