ABOUT ME
Read all about my life experiences, my 5 Rays of Sunshine, & my passions.
5 Rays of Sunshine
Literacy
Augmentative & Alternative Communication (AAC)
Advocacy
Art
Community
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Book Haley’s Rays of Sunshine for your event, class, keynote, organization, and more!
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Hi I’m Haley Shiber
I am a young advocate, artist, entrepreneur, sought after speaker and boss lady on wheels. Born with a rare genetic neuromuscular disorder, Pontocerebellar Hypoplasia (PCH) Type 1 B, I embrace my zebra stripes daily. In my decision to maximize my quality of life, I chose to have a laryngotracheal separation or separation of my airway. I was combatting many illnesses due to my swallowing muscles being weakened due to PCH Type 1 B. This meant I would lose my vocal cords; my natural voice. At Nemours, I received this life saving surgery. I use assistive technology, a PRC-Saltillo Accent 1400, to communicate and make my voice heard!
I am so passionate about my voice and how I use it to impact the world that I founded my own small business, Haley’s Rays of Sunshine (HROS). The 5 rays of sunshine I am most passionate about are: spreading literacy to all, promoting independence through advocacy for Alternative Augmentative Communication (AAC) and many other Assistive Technologies, creating adaptive art, and being an active member in the community. I chart my own path, and so can you!
In my day to day life I rely on caregivers to support me with my medical complexities and empower me to live in my home in my community. I love creating art, exercising, staying connected through social media and texting, being a part of duo teams in 5K races, all thanks to adaptations. I can be seen exercising at the local YMCA with the Endless Possibilities in the Community program, wheeling around advocating at Legislative Hall, creating art with my friends at Art Therapy Express, reading to schools with my voice using my AAC device with the help of Kati Anderson, SLP Central Delaware Speech and Language, and meeting with many individuals, students, groups, organizations, and committees in person and virtually throughout Delaware and beyond! I embrace challenges and allow nothing to stop me. I am Fearless.
MISSION
To empower AAC users to expand opportunities to access literacy and share with a colorful world through advancing assistive technology opportunities for a more diverse population.
Cultivate, educate, and encourage inclusivity. Spread awareness of the opportunities for all spectrums of communication in the greater society by providing a service that opens the doors to encourage literacy, education, and artistic experiences.
Promoting an ALL inclusive community through shared partnerships. Fostering an environment of inclusion where EVERYONE has a voice and is an active participant.
VISION
Elevate the accessibility of systemic technological advances in the world utilizing advocacy, education, art, and literacy to inspire and empower an all inclusive community.
TESTIMONIALS
“Brigitte and Haley have been friends for many years. Their big smiles, love of life, and determination to be a vital part of their communities drew them together. Haley has taught those around her that there are no limits on people with disabilities. Opportunities and support, with those two things we are able to watch Haley live her best life.”
“Haley makes a huge difference in the world! Everything she creates, or gets involved in, she gives 110%. When I need someone to teach our college interns about determination, independence… I ask Haley to be the teacher. With ease, and passion, she is a true example of ability, not disability!”
“I’ve had the pleasure of working alongside and with Haley for many, many years. I’ve watched her grow from a teen learning to find her voice to a young woman who is an articulate and passionate advocate. She is willing and open to sharing her journey with others, both to empower them and for them to learn from her experiences. Her message is one of determination, grit and positivity.”
“I met Haley in 2018 at Augmentative Communication and Empowerment Supports (ACES), at Temple University. I have had the honor of co-presenting with Haley to undergraduate students in the National Student Speech-Language-Hearing Association (NSSLHA) about AAC. Haley is a passionate public speaker, a strong advocate for herself and others, and an all-around ray of sunshine!”
“Haley Shiber is a young woman whose passion is to make a difference in the world around her. Aided by technology, that helps her move and speak; and sheer determination, Haley is driven to connect with and inspire others. She has spoken at a statewide conference on transitioning to adulthood as a young person with a disability. She is ready to spread her love of literacy. Haley reminds me that through positivity, confidence, and willpower; one can push past life’s obstacles.”
“Haley’s remarkable strength, determination, and beautiful heart speak volumes to who she is as a person. I have known Haley for over 15 years, and throughout all of this time, I have never seen Haley unable to complete a task that she sets her mind to. Haley overcomes numerous obstacles every day that many are unaware of with a positive attitude and a phenomenal smile. Haley has and will continue to always inspire me. I can wholeheartedly say the world is a much better place with you in it!”
“As a speech-language pathologist, my role in Haley’s life has been to help facilitate her access to and implementation of communication. I have been a witness to this young lady’s growth from a young child, dependent on others, to a strong and able young lady, directing her care and ambitiously going after her life’s goals. Despite many challenges, Haley has constantly impressed me with her motivation, and most of all, her perseverance. She is forever optimistic, forever looking for possibilities. As a business owner, leading my own successful company, I believe Haley’s ability to work as a team member, accountablity and motivation, are her greatest assets. For years, I have heard Haley speak about her desire to have her own company, I had no doubt back then that she would accomplish it, and no doubts now that it will be wildly successful. I am just appreciative that I have the privilege of walking beside her on the journey!”
ART MASTERPIECES
IN THE NEWS
“Delaware Sets Grassroots Advocacy Records in 2019!” – Hearts for Home Care
“Delaware Teen Gets a New Voice” – WHYY
“Making the Arts Accessible” – Out & About Greater Wilmington
COLLABORATIONS
