Local disability activists lead Abilities Expo’s community outreach efforts through ambassador program
For the New York Metro event, Abilities Expo has appointed Ambassadors—members of the local community of people with disabilities—to spearhead community outreach initiatives. These individuals will meet face-to-face with rehab institutions, independent living centers, local manufacturers, service providers and local associations to generate excitement and increase attendance at each event.
Meet the impressive individuals who have chosen to represent Abilities Expo to the Community.
Ian James Brown
Ian James Brown graduated from the United States Air Force Academy. Extremely active, he played football, rugby and volleyball as well competed in boxing, power lifting and martial arts.
Ian became a paralyzed veteran during his service in the United States Air Force.
Undaunted, Ian began a post-baccalaureate program to finish the pre-requisite courses in preparation for medical school.
Ian is heavily involved in neuro-spinal research and volunteers at the Kessler Institute for Rehabilitation and the James J. Peters Veteran’s Affairs Medical Center. He focuses on the consequences and rehabilitation of spinal and traumatic brain injuries. Ian has worked for Congressionally Directed Medical Research Programs in order to help fund responsible medical research.
In addition to his academic pursuits, Ian also works to help fit customized wheelchairs to the disabled population as a representative for Lasher Sport, LLC. As a volunteer for Lasher Sport for more than a year and a half and an ambassador to the Abilities Expos, Ian meets local clients, and travels abroad to meet patients with varied diagnoses to help find and suggest durable medical equipment, disabled resources and medical research programs.
Ian is also affiliated with the Accessible Racing program where he not only competes, but he helps design and develop the arrive and drive experience which enables people of varying disabilities to learn autocross and race driving in a fully accessible race car.
Ian is a model, spokesperson and representative for LegaWear where he helps to provide custom tailored fashion for people with varying levels of ability.
Though a retired military officer, Ian hopes to rejoin the working force in Neuro-spinal research—specifically in neuro-technology and cure research—following medical school.
Ian is also a wheelchair athlete and competed for the first time post-injury in power lifting and archery at the 2008 Veteran’s Wheelchair Games in Omaha, Nebraska where he brought home gold medals in archery and weightlifting.
Hi, I’m Dana – also known as “Tanner’s Mommy”. This is my new alias ever since my now 5-year old son Tanner entered school. Tanner has cerebral palsy and epilepsy as a result of a severe stroke and cerebral hemorrhage. In these 5 short years my family and I have been on a journey which has included awesome highs and deep lows and are still riding the waves with joy in our hearts, determination of spirit, and a ever deepening passion for advocating and serving in the disAbled community.
Tanner is our first and only child and was born normal. As you’d imagine our dreams were altered the day Tanner suffered his stroke and spent 2 weeks in ICU at 7 weeks old. There was a profound sense of grief and sadness but also anger. Tanner is our world and at the same time our world was crumbling – “How could this be” was all I could think. The day Tanner had his stroke we were told he would die. The extent of his brain damage was too severe. We were devastated! We stayed faithful and hopeful during those long dark days and by week 1 in ICU Tanner was still alive. I recall saying to the attending physician that he’s stable so things seem to be looking good. He looked at me as if I had said the sky is purple with flying pink pigs. How could I think he was stable while still on life support, not breathing on his own, not eating by mouth, still suffering seizures? In turn I looked at him and said, “My son is still alive – a week after you told me he would be dead. He is beginning to cough in discomfort from the airway – a good sign, he is opening his eyes and moving them towards sounds, his seizures have slowed. I’d say he’s stable – he’s surely not going to die and he’s already proving that he’s a fighter! I will take him any way I can have him.” And with that we began Tanner’s long, slow but steady, road to recovery.
As a family it is our mission to provide Tanner with the most “normal” life possible. Advocating for Tanner to have the best treatment, opportunities and care has not been an easy road. Professionals tend to underestimate children with disabilities while simultaneously lumping them into one category or another. Each child is exquisitely unique and should be treated as such. Parents are not crazy they are fearful, hurt, confused and hopeful and should be listened too and collaborated with – we are our child’s personal professional. I have worked diligently to open people’s minds to these realities. From arguing the merits of some sort of supportive walking device so Tanner could be free to move about on his own two feet, to finding a mainstream daycare to send him where he was the only child with major disabilities because I felt it was important for society to accept and accommodate children not exactly like themselves. It was very important for Tanner to interact with and learn from “normal” children – while also educating them.
In the past 6 months I have made major changes in my life. I have moved away from my 15+ year career in pharmaceutical medical communications to pursue a Doctorate in Physical Therapy, ultimately specializing in TBI, stroke, spinal cord injury and lymphedema. Additionally, I serve on the board for my local Special Education PTA (SEPTA) Chapter and as a Parent Member joining Committee on Preschool Education/Special Education (CPSE/CSE) meetings in support of other parents with children with special needs.
By volunteering time at local children’s and adult hospitals I am reminded that resources are not available to all. That there are many barriers to obtaining important information and interventions, and that this is unacceptable. I recall being in the ICU with other scared parents. They just nodded and mumbled when the doctors told them what they were going to do next with their child. They were not empowered to be a part of their child’s treatment or discharge plans. One step at a time, we will all be empowered. I’m on a mission!
Karen Kain
Karen Kain—a parent of a medically fragile, vaccine-injured child named Lorrin for fifteen years—teaches parents how to enjoy their children no matter their abilities. She shares how she bridged the gap from special needs to mainstream experiences in all arenas of life: best friends, slumber parties, concerts, camping, beauty pageants, Girl Scouts, school dances, musicals and endless travels.
Karen is committed to helping children who are living a unique life experience by supporting their parents. In 1994, Lorrin was severely vaccine injured and at that time Karen’s world fell apart. Life as she knew it was put “on hold” as she tried everything that she could to “heal” Lorrin and give her the best life possible.
Karen was forced to overcome massive rejection and isolation as she hurdled obstacles and adapted her life to find success as a parent of a unique child. What Karen did not expect on this journey was that she herself would learn, grow and even heal from her experiences. It turned out that Lorrin was always the teacher. She taught Karen that life is full of magic, how to love herself, not to pass judgment, to be present in the moment whether it be at the hospital or Disneyland, beauty comes from within, and that we are all one and each soul is important no matter their ability. Lorrin was totally comfortable with who she was, even though she was cortically blind, nonverbal and a quadriplegic who lived with uncontrolled seizures for her entire life.
When Lorrin was 3, Karen made a pivotal choice to embrace Lorrin’s uniqueness and enjoy all areas of life, living without rules and boundaries. Karen overcame life’s massive roadblocks as she raised Lorrin. Together they held their heads high as they paved the way to giving all parents permission to explore and enjoy life. Karen found that the solution to winning in this life of parenting a unique child started with being committed to having a great attitude and perspective regardless of their situation.
Through her keynotes sessions and workshops, Karen shares the principals that made her parenting experience a success. Her message is simple:
“It is my mission to share our life story in hopes it will support other children and their families who are living a unique life experience. It is my goal to raise awareness of the power and importance of all unique souls. I believe that Lorrin was here to pave the way to a grander attitude of love and acceptance for all. It is my honor as her parent to help spread her life’s message of love and forgiveness.”
Learn more about Karen at www.lorrinsworld.com
After receiving degrees in Sociology and Spanish (with concentrations in Latin American Studies and Peace & Justice) from Villanova University, Amanda Sullivan pursued her life-long dream of working with the less fortunate. Amanda was an aid worker & missionary for the better part of ten years. She worked with orphans, refugees and abused women and children, mainly in Latin America and The Caribbean. She has lived in Costa Rica, Chile, Panama, Jamaica and Mexico. She's worked with indigenous refugees in the foothills of Guatemala and with people with Hansen’s Disease (also known as "Leprosy") in Ecuador. She was a first responder during Hurricane Katrina & planned a wedding between two beautiful evacuees from The 9th Ward of New Orleans. She was taught how to shine in the face of adversity by some of the most spiritually-wealthy & courageous souls on the planet. Amanda left her heart with the people of Merida, Yucatan, Mexico. During her three and a half years there, she ran an orphanage for little girls, ages 6-14, and taught Spanish classes to children who speak Mayan. She loves the outdoors, sports, meeting inspired people, camping, animals & discovering new places.
Amanda came home to New York City from setting up another shelter in Mexico, for Christmas of 2008. While home, she was involved in two major car accidents within a six-week period. Despite suffering traumatic brain injuries & fracturing/breaking/injuring her entire body from head to toe, Ms. Sullivan's smile was left unscathed in her accidents. She took this as a clear sign to NEVER STOP SMILING NO MATTER WHAT. An athlete her entire life, Amanda has never been one to shy away from a challenge. The last few years have proven to be her biggest challenge yet. Amanda is mobile thanks to her forearm crutches and wheelchair.
Since her accidents, Amanda has met a plethora of incredible people with disabilities. Connecting with other positive people in this beautiful community has helped keep the fire burning inside of her soul. Ms. Sullivan has recently decided to become a wheelchair athlete, thanks to these new friendships, and just purchased her first handcycle! She's keeping her heart and mind opened to all of the lessons that can be learned through adversity. Inspiration is Amanda's motivation!!
Amanda wants anyone going through a hard time to know that NOTHING can take the love in your heart nor the light in your soul away from you. Some things happen that are totally out of our control~ People can break our hearts or our bodies ~ But ultimately WE ARE IN CONTROL of our lives. Amanda believes that an inspired soul is IMPOSSIBLE to break. Feeling like a victim and thinking negative thoughts are the ONLY true disabilities in this world. Ever since attending The NY Metro Abilities Expo in May, Amanda has been focused on ENABLING herself however possible. She no longer feels as if she needs to be getting around without her mobility aids in order to be COMPLETE.
This experience has overwhelmed Ms. Sullivan's soul with more love and hope than ever before. She has been doing between 4-6 hours of physical therapy every day for over three years & feels more empowered than ever. Amanda has become involved in many organizations which give hope to people with disabilities. She will begin giving motivational talks at schools sometime next year (when her brain is hopefully more healed) & has decided to write a book someday, as well. She wants to share all of the wonderful things that she's learned from her travels & her accidents & is excited to learn new lessons from all of you, as well. Ms. Sullivan is elated to be a NY Metro Ambassador. She feels honored to have the opportunity to make new friends & share this journey "on the cripp side" together. Finally, Amanda wants you to know that we may have been disabled by chance, BUT WE ARE ENABLED BY CHOICE.
