All Bios
Luke Sapienza
Vermont
Age: 22
What are you involved in?
Involved in the Men’s Group of Community Associates
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What is your disability?
ADHD and a heart conditiony
Why are you involved in KASA?
My mother heard about it and shared it with me . I thought it would be a good thing to be apart of and a way of speaking up.
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Allison Cardwell
California
Age: 17
What are you involved in?
At school I’m involved in the International Bacculareat Program and the Young Democrat’s Club. Outside of school, I work with Teen Court as a student attorney. I also play and coach wheelchair rugby.
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What is your disability?
cerebral palsy
Why are you involved in KASA?
I’m involved in KASA because I think it’s important for young people with disabilities to be proud of their disability and know about their rights. I have never been involved with an organization like this before and thought it would be a good way to broaden my horizons.
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Karina Chaikhoutdinov
New York
Age: 21
What are you involved in?
In Spring 2008, I graduated from Brooklyn College, in Brooklyn,NY,
with a BA in Art and minor in English. My passion in art includes,
first and foremost, photography, as well as drawing, graphic design, and
painting. A BA in Art is not much in today’s art industry, which is
why I eventually hope – in the not-to-distant future – to earn an MFA in
Advertising. Because, when I grow up, my goal is to work at an
advertising agency and design for the entertainment industry, such as movie
posters and CD/DVD labels and covers. I greatly enjoy watching movies
and learning the technical aspects of the industry, so it would be a dream
come true to be able to design the art that captures the mystery of a film.
I also enjoy reading, writing poetry, started a novel I’ll probably never
get finished, and have recently discovered I have a talent for writing
plays.
What is your disability?
My disability is Fibrodysplasia Ossificans Progressiva (FOP), which is when
muscles form into bone, and connective tissue generate an extra skeleton
that immobilizes the body. The extra bone in FOP forms by a
progressive transformation of soft tissue into cartilage and bone.
Bone regenerates after a fracture by this same process. The
abnormality in FOP occurs not in the manner of bone formation but rather in
its timing and location. The degree of disability varies from
individual to individual and can begin developing at any rate at any given
time, so there are no two people with FOP who are or have been at the same
physical stage; only the symptoms are similar. FOP affects my daily
life a great deal, as I need help with everyday tasks able-individuals take
for granted, but, with it’s progression since infancy, I have learned to
depend on myself for the little things, and, as a result, have become a
stronger and more determined person.
Why are you involved in KASA?
I began self advocacy-volunteering for the New York State Department of
Health (NYS DOH) in Spring 2007. Through NYS DOH I got involved with
KASA in Spring 2008, and continue to serve as a member on both youth
advisory boards.
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Sarah Sims
Indiana
Age: 16
What are you involved in?
I am a sophomore in high school. I play trombone in my school orchestra. I also play wheelchair basketball. Additionally, I am in involved in my church youth group.In my spare time, I love to read and cook.
What is your disability?
I have spina bifida.
Why are you involved in KASA?
I got involved in KASA to become a better advocate for
people with disabilities. I
enjoy meeting other teens with disabilities and working on the projects for
the Teen Task Force.
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Rajiv RootAge 20
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What are you involved in? I am involved with Connecticut Kids As Self Advocates, sign language club organizer at Fairfield Ludlowe HS. Northwestern Deaf Club and Disability On Wheels What is your disability? Profound deafness, Cerebral Palsy, Quadriplegia. I may be deaf and in wheelchair, but I WILL NEVER GIVE UP!!! Why are you involved in KASA? I am involved with KASA, because I believe that it is very important to work together to educate the community about disability issues. People should be more aware of people with disabilities and teach “able-bodied” world that we are just like them, “just a little broken”. More Information: I am currently a student at Northwestern Connecticut Community College. I’m taking general studies for now. My goal is to transfer to National Technical Institute for the Deaf at Rochester Institute of Technology and major in graphics/web design. I also own and manage my website at http://www.rhnet-rjrweb86.net and that is why I have been doing a lot of design since 2000. If you have any questions and/or just want to write to me, I can be reached at: [email protected] .
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What are you involved in?
I am an adviser USY teen group. I am a staff member Camp Tamarack . I have spoke in Nashville Tennessee at a special Ed conference. I am speaking at the CEC conference in April I am in the Social Work Club. I’m involved in the Jewish club on campus. I’m taking classes at college
What is your disability?
I have a cognitive impairment but have cool technology like dragon speak and screen reader
Why are you involved in KASA?
I got involved with my KASA board that going to board meetings I like doing conference calls and like doing the work with the board
I am happy to help the task force members out in every conference call.
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Justin Louchart
Hi, my name is Justin, nice to meet you! I tend to
spend most of my time doing school work, being quite busy with my Debate
Team, Latin Class, and honors English 10, etcetera; not to mention my
astoundingly mounting social schedule. I’m a 15 year old boy in my second
year of high school and I never cut any corners with my time management. I
am rather good with technology, foreign languages, forensic drama, and
martial arts, and it’s rather obvious that creativity is an adjective highly
associated with my personality. As both writing and speaking are two highly
regarded hobbies, I take out a rather large portion of time to dedicate to
these wondrous actions.
I am associated with KASA for a very simple reason,
though hopefully not too mesmerizingly trite, but to help people. I’ve found
that those with disabilities are far too commonly ignored, terms and papers
thrown around with no actual concept of human civilization. For this reason,
among similar others, I started a local organization in my city to teach
middle school children about disabilities and other world issues. After
becoming more involved with this group it led me to middle school speeches,
and then onto college presentations. I later received an email from a friend
in the government, introducing me by the open application process to the
wonderful association of KASA. After becoming so strongly connected with the
KASA Task Force, and will most likely move on eventually to more in depth
committees under the same KASA title. Highly motivated and awe inspiringly
involved are two awe-inspiringly significant terms to be tacked onto a KASA
worker, and I believe that with the combined efforts of the KASA groups we
will finally accomplish a world goal: making the Earth a better place to
live.
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What are you involved in?
KASA; National Youth Leadership Network; Commuter Student Association, President 2005, Historian 2004-2005; Student Support Services of TRiO Programs, Scrapbook Committee Co-Chair 2004-2004; Kappa Delta Pi (International Honor Society in Education), Nu Epsilon Chapter; Children’s Rehabilitation Service’s Youth Advisory Committee; Youth Leadership Forum Steering Committee and Reunion Committee; Teacher for the Kids Rock for Jesus Ministry at Old Augusta Baptist Church
What is your disability?
I have phocomelia, also known as radial clubbed hands. With some people, phocomelia is present in the arms, legs, or any combination of both. It is present in both of my arms. They are shorter than “normal” arms and are bent at the wrists. My condition makes it hard for me to reach things; being short doesn’t help either. It is sometimes difficult to carry stuff too. Though it may not sound like it, I am able to do a lot of things by myself.
Why are you involved in KASA?
I first heard about KASA through my supervisor. I work as the Youth Consultant with Children’s Rehabilitation Service, a division of the Alabama Department of Rehabilitation Services. Being a member of KASA was included into my job description by my supervisor.
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Bryan Dooley
North Carolina
Age: 19
What are you involved in?
I am a principle problem solvers scholar at Guilford College, DYP
What is your disability?
Cerebral Palsy
Why are you involved in KASA?
After meeting Naomi and Matt Potter at a DYP function, I became interested in what KASA was doing. After college, and possibly Law School, I want to work for the rights of the disabled in some way.
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Age 18 California Freshman in college email: [email protected] |
What are you involved in? camp counselor, crew team, student government, leadership dorm What is your disability? Hypertelism and Scoliosis Why are you involved in KASA? I’m in involved in KASA because I believe, that it is important that youth with disabilities have a voice of their own. |
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Heidi FletcherAge 14
Shepherd, Michigan
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What are you involved in? I am currently the Social Chairman of my Church Youth group where I maintain order and organization for the group. I was selected by my teammates as Captain of the Basketball team. I am involved in 4-H, where I show pigs, rabbits and chickens and make crafts such as wood-working, cake decorating, food preparation and artistic pieces. During fair week I also help a friend sell candy at her booth. I sing in the church choir and I like to ice skate and bowl. What is your disability? I am Learning Disabled. I have dyslexia, which hinders my reading in all subject areas, thus making it difficult to understand. My listening skills are better than most because I have trained myself to listen since I have a problem reading. Why are you involved in KASA? As a KASA board member I would like to teach others more about disabilities and how to overcome challenges. I am willing to advocate out into the community and at my school. School (if any) or Job (If any) The Morey Charter School in Shepherd, Michigan
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Tyler Greene
Iowa
Age: 18
What are you involved in?
My name is Tyler Greene, I’m 18 and I go to Hawkeye Community College in Waterloo, IA.
What is your disability?
I have Cerebral Palsy among some
other things, but live a completely typical life.
Why are you involved in KASA?
I have been on the KASA task force for 4
years now and I love every minute of it! I joined KASA because my passion is advocacy and equality for all
people, Over the course of the 4 years I have been involved in KASA, I have
learned things about disability heritage and culture. My goal in life is to
make change in the way people view disability, or more importantly,ABILITY!’
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Hamza Jaka
Wisconsin
Age: 16
Email: [email protected]
What are you involved in?,
Gabriel Cazeres
Texas
Age: 16
What are you involved in?
In addition to KASA, I am a member of NYLN, (National Youth Leadership
Network.)I am the note taker of the NYLN Advocacy Committee calls.
I am the vice president of Northbrook Senior High School Speech and Debate team.
I am also the assistant youth coordinator for our youth department at church.
What is your disability?
I am visually impaired because of glaucoma.
This is a genetic condition that has affected all the males in my family.
As a result, I currently have some object perception and can recognize a few colors.
I read Braille and use several pieces of technology to maintain academic performance.
Why are you involved in KASA?
I wanted to join KASA because I have learned how important advocacy skills
are for a disabled individual.
I hope this experience will strengthen my advocacy skills.
I also hope that this will enable me to share the importance of advocacy skills with others.
Gabriel Cazeres
Texas
Age: 16
What are you involved in?
In addition to KASA, I am a member of NYLN, (National Youth Leadership
Network.)I am the note taker of the NYLN Advocacy Committee calls.
I am the vice president of Northbrook Senior High School Speech and Debate team.
I am also the assistant youth coordinator for our youth department at church.
What is your disability?
I am visually impaired because of glaucoma.
This is a genetic condition that has affected all the males in my family.
As a result, I currently have some object perception and can recognize a few colors.
I read Braille and use several pieces of technology to maintain academic performance.
Why are you involved in KASA?
I wanted to join KASA because I have learned how important advocacy skills
are for a disabled individual.
I hope this experience will strengthen my advocacy skills.
I also hope that this will enable me to share the importance of advocacy skills with others.
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Danielle Fellguth
California
Age: 15
What are you involved in?
Outside of school, I am involved in California Association of Student Councils and have been to some of their conferences. I’ve been a student of Axis Dance Company for eight years and have participated in a production of the Marsh Youth Theater in San Francisco called Fears of Your Life. I also volunteer at my local library during the summer. In school, I plan to be in leadership, am a member of the Gifted And Talented Educated (GATE) program and am heavily involved in California Association of Student Councils (CASC). Additionally, I have been involved in California�s Junior Scholarship Federation (CJSF) and am involved in California�s Scholarship Federation (CSF).
What is your disability?
I have Cerebral Palsy which is a disability caused by having a lack of oxygen before, during, or after birth. It affects my ability to walk, so I use a wheelchair.
Why are you involved in KASA?
I am involved in KASA because I love leadership and being an advocate for myself and others. I also feel the need to educate as many people as possible about disabilities. Lastly, I believe that KASA will help me sharpen my advocacy and leadership skills.
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Emily Sinton
California
Age: 15
What are you involved in?
Besides KASA and lots and lots of schoolwork, I volunteer at my local hospital two hours a week doing paperwork and helping to keep nursing home residents entertained. I also occasionally work for a professor at the university where my parents teach.
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What is your disability?
I have cerebral palsy. I use a walker most of the time and a wheelchair for longer distances.
Why are you involved in KASA?
I got involved in KASA because I wanted to become more involved in the disability community and help other people with disabilities. I also wanted to meet new and interesting people and l wanted to learn more about advocating for myself and others..
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Emily Bill
Age: 20,
Wilson Parrish Middleton |
Age: 13 Lives in: Alaska Why are you involved in the KASA Task Force? I want to share helpful information with people who experience disabilities and people who don’t. I hope to make more people aware of healthy choices.
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Kate Atwood
Texas
Age: 16
What are you involved in?
I love writing books (mainly mysteries and thrillers- they’re fun to write!) and learning to speak other languages (currently Latin and Old English), as well as hanging out with friends and dancing and listening to music. I love what most people would consider oldies, and my favorite band is The Beatles. I also found that I enjoy public speaking, which, when I was younger, is something I thought I would never like.
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What is your disability?
I experienced a stroke before I was born and can’t use my right side very well, but it doesn’t bother me any
Why are you involved in KASA?
I became involved with KASA because I love helping other people with disabilities. People often hear about many different kinds of rights, such as women’s rights, but many people don’t hear about disability rights. As youth with disabilities, we should get the word out and help other youth know that they’re special with what they have. Our disabilities are a part of us, and we’re all unique. KASA provided me with an opportunity to help other people and youth with disabilities, and I’m definitely going to seize {take} that chance. I am disabled. Hear me roar!
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Carrie Piaggi
Massachusetts
Age: 16
What are you involved in?
At school, I am involved in Business Professionals of America (BPA) which is a career and technical organization for students pursuing careers in business management, office administration, and other related career fields. For BPA, I recently went to Anaheim, CA for their national competition. Outside of school, I volunteer at a local elementary school in their summer school program. I also do R.O.P.E.S. Course (Respecting Other People Encouraging Self Esteem) in the summer. I have been doing it for 6 years now. I do Special Olympics, the events that I do are: Equestrian (horseback riding), and skiing.
What is your disability?
I have Cerebral Palsy. It affects my walking in many different ways. I walk with one crutch. For long distances, I use a wheelchair..
Why are you involved in KASA?
I got involved in KASA because I have good leadership skills and I love to advocate for myself and my friends. I also wanted to able use skills I learned from past experiences that having a disability to help others in similar situations.
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Shanea BlountAge 19
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What are you involved in? NYLN,Big Brother,Big Sister, Jewish Home and Hospital,MS Walk What is your disability? I Have limited mobility on my right side( because of brain Tumor), and learning disability. Why are you involved in KASA? I am involved in KASA because i believe it is important to advocate for disabled peoples. School (if any) or Job (If any) Westchester Community College
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Sarah IngersonAge 18 I’m a senior at Oswego High School, where I will graduate in June. In the fall I’ll be attending Buffalo State for a major in Speech Pathology and minor in Spanish. |
What are you involved in? Symphonic Band (I play the French horn) 1996 – present, Marching Band (I played percussion) 2002 – 2004, Girls Varsity Indoor Track (I did shot put) 2003, wheelchair basketball 2005 – present, church youth group 1999 – present, KASA Board – present, Empire State Games for the Physically Challenged 2000 – present, traveled to Ireland with the Physically Challenged Irish – American Youth Team summer ’04, assist with local after school programs for middle schoolers and teach about disability awareness 2003 – present, receptionist at ARISE, a Center for Independent Living (they assist disabled individuals) 2004 – present, Archery league 1999 – 2003, Challenger American Sign Language Club 2001 – 2003, volunteer at University Hospital in Syracuse, NY summer ’04 – present What is your disability? I have a spinal cord lesion, and therefore am paralyzed. I use a manual wheelchair to get around. Why are you involved in KASA? I’m involved in KASA because I believe that every youth with any kind of ability should have a voice in society. |
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Naomi Ortiz |
My name is Naomi Ortiz and I am one of the founding members of KASA. I am the Project Coordinator for the KASA Project, Youth Information, Training and Resource Center Program. I really believe in the KASA mission and vision of young people with disabilities having a true voice in what affects them as well as in the larger disability community. I serve on the AZ Statewide Independent Living Council and work with several other local and national disability groups. I was born with Arthrogryposis Multiplex Congenita and am proud to be a person with a disability. I want to work toward building a more united disability community that is aware of its own culture and ability to make change. I’m also an artist who loves to draw, paint, write and sing. Direct Phone: 520-881-4672 email: [email protected]
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Matthew Potter
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MATTHEW POTTER Matt Potter is a 19 year old sophomore at Wake Forest University, living in Pfafftown, North Carolina. He got his start in spreading self advocacy as a part of his high school’s “Self Advocacy Leaders”. Since starting at Wake Forest, Matt has become involved with KASA, NCYLN (North Carolina Youth Leadership Network), NYLN (National Youth Leadership Network), and Wake Forest’s Disabilities Awareness Coalition and ADA Compliance Task Force. His interests include writing, computers, and comedy.
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Lyndsi Holmes |
Age: 17 Lives in: New York Why are you involved in the KASA Task Force? I am involved in KASA because it is important to give kids with disabilities like me a voice. KASA allows kids to have the opportunity to be a part of something bigger than oneself. Because I think that if kids can be as informed as possible it would help them to live better lives and make them able to tell others what they need. Also, I want to help, in whatever way possible, to give kids this information.
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Eleanor Bailey |
Age: 17 Lives in: Oregon Why are you involved in the KASA Task Force? I want to help other kids with disabilities. I have Down syndrome and I want to talk to parents of little kids with Down syndrome and help them. I want to learn about disability history and be part of disability history. I am involved in KASA to help kids and adults with disabilities. I am older now and it is more important than when I started.
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Chad Murphy PriceAge 22
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What are you involved in? Public Speaking, KASA and driving my mom and dad crazy!!! HA HA (just kidding) What is your disability? Cerebral Palsy Why are you involved in KASA? To help other youth and young adults with disabilities become good self-advocates and to help them stand up for what they need. School Milwaukee Area Technical College
Bio for Chad Murphy-Price: I graduated from New Berlin West High School in June 2001. I am currently attending Milwaukee Area Technical College, pursuing an Associate Degree in the Visual Communications Program. I will complete my program (with any luck!) and get my Associate Degree in spring 2006. I have spoken at numerous state and national conferences about my transition experience. When I am not working hard on behalf of KASA for youth and young adults with disabilities, you will find me attending sporting events, (cheering for the real America’s team the Green Bay Packers!), working with computers, and hanging out with friends. I have recently started two web site design business. I started CT Digital with a friend, and All-Star Design Studio by myself. To get more information on CT Digital go to www.ctdigitalwi.com or All-Star Design Studio go to www.chadmp.com Thanks for stopping by and learning more about Kids As Self Advocates (KASA). If you have an issue you think needs to be addressed by the KASA National Advisory Board please email me.
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Andrew Sartorius |
Lives in: Missouri Why are you involved in the KASA Task Force? I wanted to be a part of the task force for two major reasons. The first is that I think that I can, and would like to, make a difference for other people with disabilities. The second is that I think all students with disabilities should know what they need and how to get it.
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Mallory Cyr
Maine
Age: 23
What are you involved in?
I work full time as the Youth Coordinator for the HRSA/MCHB funded projects coordinated at the Maine Support Network: the Healthy & Ready to Work National Resource Center and the NFI Integrative Services grant for Maine. Recently I was honored to get selected to be on the Alumni Council of The Hole in the Wall Gang Camp, which I attended for seven years and is originally founded by actor, Paul Newman.
I have a degree in creative writing, and volunteer doing publicity and writing press releases for my local theater, as well as slowly plugging away at my autobiographical memoir.
What is your disability?
I have a rare chronic digestive disorder called Microvillous Inclusion Disease, which means I do not absorb nutrients from food and must receive all my daily nutrients intravenously. Because of certain nutrients being left out of my treatment when I was much younger, my growth is stunted at the height of 3’9” and I have some minor joint deformities as well.
Why are you involved in KASA?
I have been doing advocacy work for almost ten years now, and I believe it is very important for the voices of youth to be heard, especially in the world of healthcare. We are the next generations of consumers and it is essential that we know how to navigate the system and voice our needs. I am very excited to be working on a national level with such wonderful young, motivated, people!
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Kelsie Cain
Age: 16
My name is Kelsie Cain.
I am 16 years old and am a junior in high school.
I joined KASA because I wanted to learn how to better advocate for
myself. I also wanted to learn
how to be an advocate for my community.
It has given me the opportunity to make changes on a bigger scale
than I could have ever imagined.
KASA has shown me the power that I have as an individual with a
disability.
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Lyndsi Holmes
New York
Age: 19
What are you involved in?
I am involved in Amnesty International, political awareness on campus
and chorus. I am a political science major with a Spanish minor and
inclusive education.
Why are you involved in KASA?
I became involved in KASA because I wanted to meet more
people with disabilities and learn to become a leader in my society.
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Natalie Burdick |
Age: 17 Lives in: Utah Why are you involved in the KASA Task Force? To make a difference for kids like me
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Samantha HenaultAge 15 |
What are you involved in? I am involved in KASA. What is your disability? I have ADHD and a learning disability. Why are you involved in KASA? I am involved with KASA to make a difference and to stand up and make my voice heard. |
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What is your disability? Why are you involved in KASA? |
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What is your disability? Why are you involved in KASA? |
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What is your disability? Why are you involved in KASA? Mitch is 17 years old and in high school in Wisconsin. When he isn’t on the computer J, Mitchell likes to root for the Wisconsin Badgers and the Green Bay Packers. Transportation is a big issue for Mitchell—that is helping kids and families learn about how to access transportation because he is concerned that not enough kids gets to go places just because they can’t afford the vans or minivans they need to get around. |
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What is your disability? Why are you involved in KASA?
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What is your disability? Why are you involved in KASA? |
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I graduated high school in June, 2003 and I am currently not in school right now What is your disability? Why are you involved in KASA? |
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What is your disability? Why are you involved in KASA?
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I am the youngest State Independent Living Council Chair throughout the entire Country. I was the former Chair of the National Council on Disability, Youth Advisory Council in which I assisted in writing to public policy reports: one on the reauth. of IDEA and the other on Higher Ed. I work full time for an Independent Living Center in California as a 1/2 Systems Change Advocate, 1/2 Program Manager. I was recently awarded employee of the year and have been recognized for my advocacy work in the area of youth involvement throughout the state of California. I have also worked extensively with the CA. Governors Committee for the past 8 years. I am the facilitator of the CA. Youth Leadership Forum and I assisted in training others states on how to make a YLF work. I have mentored a handful of youth with disabilities that have come out of the Youth Leadership Forum and have been an Alumni speaker for the program. I am currently working with Hawaii to get them to start a YLF. I’m really linked in with a variety of local, statewide, and national disability related organizations/bodies. I have been presenting on various youth with disability issues for about 5 – 6 years now. I have spoken locally, statewide, nationally, and to a group of youth from Russia. If I had to pick a specialty area to speak on it would be, why its important to get youth involved and ways that youth can contribute to an organization, committee, etc.
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What is your disability? My illness has been a challenge in my life. It is very easy for me to get sick, and so I am out of school a lot. This makes it hard to keep up with the students who are there everyday. I have informed my teachers of this problem, and have worked hard to stay ahead. It has worked out quite nicely, and I very rarely have problems. Another challenge I am faced with is my height. I am 17 years old, and 4’9″. This makes it hard for people who I have just met to take me seriously. To gain respect I have to have twice the information, and talk twice as smart, as anyone else. Although, these are tough challenges to overcome, it has helped me to gain confidence in myself. Why are you involved in KASA? Maia is 18 years old and in her second year at University of Wisconsin-Madison. Among other things, Maia plays piano. It took a while to diagnose Maia’s needs and she says it would have helped to have has someone know what was going on and help her with it.
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What is your disability? Why are you involved in KASA? Katie is 22 years old and in college in Iowa. Katie has been an advocate all her life. You can read more about her story on the website She is also a HUGE professional wrestling fan, as well as a fan of basketball—especially the WNBA and college hoops. She has traveled quite a bit to Washington DC to speak before policymakers about kids with special health care needs. She is a co-founder of KASA and co-chair of the KASA Board.
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