Youth as Self-Advocates

Board of Directors

Elisabeth Harkins, Co-Chair

Age: 22

Hometown: North Augusta, South Carolina

About Lis:

Lis recently received her Associates of Arts degree from Aiken Technical College and an Associates in Criminal Justice. She will be transferring to Clemson to get her bachelor’s in psychology with a minor in American Sign Language. She works part time at her local Center for Independent Living doing office support, is an assistant Girl Scout leader, and has been a member of YASA for two years. She is also a member of the National Center for Independent Living Youth Caucus. She has multiple disabilities including scoliosis, ADHD, and a learning disability called dysgraphia. Lis loves volunteering, advocacy, reading, listening to music, playing video games. She also loves to travel and meet new people. She has four cats and a boyfriend of three years. Lis hopes to travel to other countries one day to experience their culture and people.

Luke Byram, Co-Chair

Age: 25

Years working with YASA: 2017-Present

Hometown: Tacoma, Washington

About Luke:

Luke is a young adult with Cerebral Palsy who is an advocate for himself and others. Luke is a member of the YASA Board for five years. In addition to his work with YASA, Luke served on the Board of Directors of Center for Independence in Lakewood, Washington for five years. He has served as a member of the Tacoma Area Commission on Disabilities since 2014. He also is a member of the National Council on Independent Living (NCIL). Luke lives in Tacoma, Washington and studies law and public policy at the University of Washington-Tacoma.

Atif Deen

Atif Deen, Co-Chair

Age: 20

Years working with YASA: 2020-Present

Hometown: Valley Stream, New York

About Atif:

Atif was born and raised in Queens, NY and moved with his family to Valley Stream three years ago.  He and his twin brother, Arif were born with Cerebral Palsy. He has been in a wheelchair since he was a child.  Although his disability makes many things in life more difficult, it also helps teach him how to become an advocate for himself and others.  He loves socializing and getting to know new people.  He is a good-natured person, who appreciates a good sense of humor.  Atif joined YASA because he wanted to explore and improve his advocacy skills, as well as meet and discuss important issues with others. 

Wednesday Eanes, Board Member

Age: 26

Hometown: Alamogordo New Mexico

About Wednesday:

Wednesday is currently studying as a full time student at St John’s College in Santa Fe. She hopes to earn a degree in counseling to offer support to others like herself who have spent a large part of their lives navigating a complicated medical history.  Wednesday believes wholeheartedly in the inclusion, normalization of disability in American culture. She joined YASA in order to experience different perspectives within the disabled community and to take an active role in positive change. 

Ayanda

Ayanda Nnachi, Board Member

Age: 19

Hometown: Hurricane, West Virginia

Ayanda has Cerebral Palsy and is attending Marshall University majoring in Political Science. She plans to become an attorney. Ayanda joined YASA because she felt it was her duty to advocate for other youth with disabilities who can’t advocate for themselves.

Arif

Arif Deen, Board Member

Age: 20

Hometown: Valley Stream, New York

About Arif:

Arif was born with Cerebral Palsy. He a friendly, thoughtful, and hardworking person. Arif feels very strongly about advocating for people with disabilities. He decided to join YASA because he wants to help spread awareness about issues that are relevant to us today. He looks forward to working with others to help make changes. 

Shannaon

Shannon O'Hara Wiora, Board Member

Age: 20

Years working with YASA: 2019 -Present

Hometown: Virginia Beach, Virginia

About Shanon:

Shannon was disgnosed with Autism when she was a year old. She spent the summer of 2021 as an intern with the National Institute of Health’s National Institute of Neurological Disorders and Stroke, and serves  on the Youth Voice Amplified Committee Member at the Association of Maternal and Child Health Programs, a Consumer Committee Member at Safest Drug, and a Youth Action Council Member at University of Massachusetts Medical School. She loves to learn about new people and promotes acceptance of those who are different by educating people about what it’s like to live with a disability.

Jake

Jake Shumbo, Board Member

Age: 22

Years working with YASA: 2020-Present

Hometown: Colchester, Connecticut

About Jake:

At age 13,  Jake sustained a traumatic brain injury.  He spent the years since his accident in various therapies to help him regain some of what he lost. Being differently abled has opened a whole new world for him. He’s had the opportunity to meet people he may not have had the chance to before. He’s learned to advocate for myself and for others who may not have the voice to do so. Jake put his passion for self-advocacy into a public speaking career which has allowed him to spread his message of self-advocacy, youth voice and being DIFFERENTLY abled to audiences from around the country. Being part of YASA continues to let him connect with people and support them, while continuing to learn and grow.  He looks forward to this journey and the positive impact he can make.

Emily Cowen

Emily Cowen, Board Member

Age: 21

Years working with YASA: 2020-Present

Hometown: Fairfield, CT

About Emily:

Emily has cerebral palsy. She attends Sacred Heart University where she is majoring in psychology. She hopes to become a therapist in the future. She is a memeber of CT KASA, a youth focused project at PATH Parent to Parent/Family Voices of Connecticut.  When she’s not busy with school, she enjoys spending time with her friends and family, playing with her dog Bella, listening to music, and watching Netflix. She also loves Starbucks.

Graphic image of young woman wearing headphones

Ellis Sardorian (they/them), Board Member

Age: 24

Years working with YASA: 2020 -Present

Hometown: Hampstead, Maryland

About Ellis:

Ellis Sardorian (they/them) is an advocate, story teller, community member, and space holder. They are an Americorps member working in MD.  Ellis is a 2021 Dinah Cohen DREAM Fellow with the National Disability Mentoring Coalition, developing a webinar on best practices for inter-abled mentoring relationships. In their free time, Ellis makes their own clothes.

 

Nic Brown

Nic Brown, Board Member

Age: 21

Years working with YASA: 2020-Present

Hometown: Portland, Oregan

About Nic:

Nic is originally from Atlanta Georgia. He currently lives in Portland, Oregon where he is attending his final year at CTP community transition program. He hopes to go to college and study psychology. He is a major advocate for not only himself, but for all of his disability community. He has gone to the state capital to speak to legislators and representatives about how they can support disabled people more, and he volunteers with many nonprofit organizations that support people with disabilities, including United Cerebral Palsy (UCP). Nic is committed to making the world a more equal place for disabled people.  He’s excited and ready to work with YASA to work towards this goal.

Graphic outline of someone reaching up to three stars.

YOU, Board Member

Age: 13-26 years old

Hometown: Anywhere, USA

About YOU:

Are you a youth with a disability or chronic health condition between the ages of 13 and 26 who wants to make a difference? Find all the details about becoming a YASA Board Member HERE.

Danielle Fellguth, Alumni

Age: 26

Hometown: San Francisco, CA

Years working with KASA: 2008-2020

About Danielle:

Danielle is a second year law student at USC Gould School of Law pursuing entertainment law. Danielle has been part of the disability rights community in one way or another since elementary school and is passionate about supporting people with disabilities in fields where we are underrepresented, especially the entertainment industry. In her free time, Danielle enjoys traveling, finding the best restaurants and coffee shops, and spending time with family and friends.

Hamza Jaka, Alumni Coordinator

Age: 27

Hometown: Fontana, Wisconsin

Years working with KASA: 2007-2019

About Hamza:

Hamza Jaka is an attorney, who identifies as a disabled man of color. Hamza has been part of the disability rights community since his teenage years and is particularly passionate about supporting disabled people from multiply marginalized groups. He is proud to have travelled the world and embarked on his journey with friends and family in tow.

Emily Ball, Alumni

Age: 28

Years working with YASA: 2019-Present

Hometown: Wallingford CT

About Emily:

Emily Ball earned an a A.S. degree as a Disability Specialist and is a public speaker. She joined YASA to share her perspective and learn from others in similar situations or circumstances. She is also a member of Connecticut’s Youth Advisory Board where she learns about other disabled young people’s perspectives and is involved in planning their annual events. She is a graduate of the Leadership Education in Neurodevelopmental and Related Disabilities Program and Partners in Policymaking. In her free time, she like to read, participate in various sports, hang out with her two dogs and two cats and listen to music.

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Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

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