All Bios


 

Luke Sapienza

Vermont

Age: 22

What are you involved in?

Involved in the Men’s Group of Community Associates
.

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.
.

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 Root

Age 20

 

 

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: RJJai86@rhnet-rjrweb86.net .

 

,

Micah Fialka Feldman

Micah Fialka-Feldman

Michigan
Oakland University

Age: 22

Email: micahff@aol.com


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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Jennifer Thomas

Age: 21
Alabama
Alabama State University

Email: jthomas@state.rehab.al.us

 

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.

,

Age 18

California

Freshman in college

email: jennhalp@aol.com

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.

,

Micah

Heidi Fletcher

Age 14

 

Shepherd, Michigan

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!’

,

Hamza Jaka

Wisconsin

Age: 16

Email: hamzajaka@hotmail.com

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.

,

 

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.

,

 

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.

.

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..

,

 

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.

,

 

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.

.

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 Blount

Age 19

 

 

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 Ingerson

Age 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: ortizn@fvkasa.org

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Matthew Potter

 

 

 

 

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.

,

Chad Murphy Price

Age 22

 

 

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 Henault

Age 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.

     

Mara Buchbinder
Mara Buchbinder


Age 22

Washington

email

     


What are you involved in?
I just graduated from Dartmouth College in New Hampshire, and am now working as a research coordinator at the veteran’s hospital in Seattle doing substance abuse research. At Dartmouth, I did research using video cameras to help doctors understand what it’s like for teenagers to live with chronic illnesses, by having patients create video narrative accounts of life with diabetes. I am currently working on publishing the results of my research and presenting my findings at national conferences. I hope to continue my studies in medical anthropology next year. I am also involved with the Young Ambassadors Program of the Seattle branch of the Crohn’s & Colitis Foundation of America, and enjoy running and skiing in my free time.

What is your disability?
Crohn’s Disease, an autoimmune condition in which the immune system attacks the digestive system.

Why are you involved in KASA?
In my experience, I have found that while dealing with a chronic health condition can be very frustrating and debilitating, it can also be an empowering experience. I like that KASA makes it possible for kids to advocate for themselves and make the best out of difficult circumstances.

     

     

Micah Fialka-Feldman
Micah Fialka-Feldman


Age 20

Michigan

Oakland University

email

     


What are you involved in?
I attend classes at Oakland University as a freshman. At my college I am a member of a jewish youth group and am part of the Social Work Club. I enjoy passing out literature for the democrats and helping with their campaign. For the past 3 years I have been on the KASA board and had lots of fun.

What is your disability?
I have some cognitive impairments so people help me read, write, take notes, and do math. I have a great computer software, called Write Outloud which reads everything to me, including all of the KASA emails and web page. It doesn’t stop me from doing things. I have a good mind and I am proud of my life. I am fully included in regular classooms. A famous person said, “Mainstreaming is visiting, inclusion is belonging.”

Why are you involved in KASA?
I thought it would be a fun program. I was proud to learn about KASA. It has a good website because it seemed interesting. KASA is working on inclusion and disability rights. I like the stories and poems on the website. People are brave to do this work. KASA can teach people about self advocacy. I will try to make a difference by being on the KASA Board.

     

     

Mitchell Hamilton
Mitchell Hamilton


Age 17

Wisconsin

wheelingdude@charter.net

     


What are you involved in?
Special Olympics,–bowling and wheelchair raved. Vica club at high school,–recently finished annual fruit sales. I sold over $400, mostly by using the phone, because I can’t get to the doors of most houses.

What is your disability?
I have Spina Bifida. I am in a wheelchair (a power chair). I have no nerve development from the middle of my chest. I also have a right hand that doesn’t work properly. I need someone to help me dress and undress. I try to help some when I am well. I guess I need help with all my daily cares. Going places by myself is a problem, especially after dark. Many places in our small town are not accessible with my wheelchair. It is hard to open doors by myself and the library is up a flight of stairs. They have talked about putting in an elevator, but it hasn’t happened yet.

Why are you involved in KASA?
I got involved in KASA because I’m concerned about the lack of affordable transportation for individuals with physical disabilities. Especially people who use power wheelchairs and live in rural areas. I am also interested in assistive technology and in helping other kids with disabilities learn about what technology is available to help increase their independence.

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.

     

     

Amanda Putz
Amanda Putz


Age 17

New York

email

     


What are you involved in?
I am involved with my afterschool singing and art programs. I am also a volunteer as a child care provider for kids with disabilites. at my mothers job.

What is your disability?
My disability is a learning disability

Why are you involved in KASA?
i am involved with kasa for two reason. my first reason is because of my younger brother who has Down Syndrome. who can not really tell people what he needs and how he feels or basiclly advocate for himslef. My second reason is i love to stand up for my rights and others and fight for the injustices that we get every day. and also to let the youth with disabilites know what rights they have and what rights they should go for.

     

     


Erin Oliver


Age 16

Freelance Journalist/Photographer

Nebraska

email

     


What are you involved in?
Being involved in community activities and such is what I do with my free time, so I’m involved in a lot. I’m a new member to the KASA Board, which I’m absolutely loving. Teaching Sunday School, Vacation Bible School, AWANAs, and musicals at my church are major activities for me. I also enjoy freelance journalism and photography. You can see some of my work on the KASA website as well as DisabilityCentral.com, TheCorrsOnline.com, TeenWebOnline.com, The New York Times Upfront, and Teenage Buzz Magazine. Other activities include being involved in a local youth club for Diabetics, performing various campaign work, involvement in Sign Language Club, editorial duties for my school’s online literary magazine, writing news stories for my high school newspaper, and secretarial duties for my high school’s chapter of the Junior Classical League.

What is your disability?
I was diagnosed with Type One Juvenile Diabetes in September of 1998. A bout with mono during my freshman year of high school combined with an already weakened immune system resulted in my Chronic Fatigue Syndrome, a chronic illness that effects many body systems.

Why are you involved in KASA?
I’m involved with KASA because of it’s one-of-a-kind youth led structure. KASA is an organization with a clear goal and clear results. I consider myself extremely lucky to be able to work with such a great group of people in the quest for equal treatment and opportunities for individuals with disabilities and special health care needs.

     

     

Emily Winter
Emily Winter


Age 20

California

email

     


I graduated high school in June, 2003 and I am currently not in school right now

What are you involved in?
I am living in Park City, Utah right now and am involved in the Park City Disabled Ski Team.

What is your disability?
My disability is called spina bifida. I can’t feel anything below my knees down. I use a manual wheelchair to get around.

Why are you involved in KASA?
I am involved in KASA because I want to help youth with disabilities advocate for themselves and to lead an independent life

     

     


Jen Halpert


Age 17

California

Thousand Oaks High School

email

     


What are you involved in?
Thousand Oaks Youth Commission, Teen Court, Health Science Academy, United Synagogue Youth, Judaic Awareness Club, elementary school aide, Link Crew, and Stained glass.

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.

     

     

Christina Mills
Christina Mills




KASA CONSULTANT

email

     


I have been working for KASA as a Consultant for over 2 years now, but prior to my position I was a member who contributed to the website. I wrote articles on my own disability, disability sports, as well as advocacy stories. The support I have received from KASA has assisted me in starting a KASA Chapter within my own community, YAG, the Youth Advocacy Group.

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.

     

     


Maia Wroblewski


Age 18

Wisconsin

mkwroblewski@students.wisc.edu

     


What are you involved in?
I find that it is important to keep active. I love being part of a group that makes a difference, or is involved in something fun. Activities that I am regularly involved in include: National Honors Society, Future Business Leaders of America, National Art Honor Society, Art Club, Waterloo Community Theater, School Theater, Young and Old Stick Together, Visual Arts Classic, Piano, and KASA. This long list might look overwhelming to some, but not everything happens at the same time, and being involved in a variety of activities helps me to learn schedule management skills.

What is your disability?
When I was born I was a very sick baby. I went to countless doctors, and my disease was unknown. It wasn’t until I was 13 when the proper diagnosis was made. My illness was a rare disease known as Autoimmune Enteropathy, an inflammation of my immune system. My body has overactive response cells that when released to fight infection, also attack the cells in my body. The treatment for this disease makes me very susceptible to germs and infections. With constant use of these treatments my height has suffered, and my ability to fight off common colds.

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?
KASA is a committee that seemed interesting. When I heard that it was to be supported by youth, and for youth, I was hooked. I want to help inform people about how they can turn weaknesses into strengths. I also have a lot of experience with areas that took me 17 years to learn, if I could help others to learn these things without having to go through 17 years of testing, that would be great. KASA looks like a great committee, ready to make a difference and have fun, and that is what I love to do.

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.

     

     


Katie Beckett


Age 22

Iowa

Rhiannon60@yahoo.com

     


What are you involved in?
I am involved in English Club, Mount Mercy Disability Awareness Organization and KASA.

What is your disability?
My disability is a paralyzed diaphragm that stemmed from viral encephalitis. Besides my breathing my energy level, swallowing, chewing and digestion was affected. I have severe acid reflux. I have a severed nerve, which caused very limited mobility in my left arm and shoulder. Other then that I’m fine.

Why are you involved in KASA?
I became involved in KASA because I think it is important for young people with disabilities to be as knowledgeable as they can about their disability and their rights as individuals instead of having parents or a caretaker advocate for them because the more you know and do the more independent you feel. It also helps medical personnel, other professionals and most importantly your parents see you as a capable adult.

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.

     

     
     


Amber Kean


Age 15

Georgia

     

     My name is Amber and I like to draw. My drawing is a symbol of my spirit and strength. My drawing means to me that for people with disabilities, they can have talents of their own. I hope other kids have a chance to find their talents, too. One day, I would like to be an animator of Japanese anime. I would also like to be a comic book illustrator for my own fantasy stories. When I draw, I feel like I can do anything. When I was younger, I wanted to make books with no words, just drawings. Since I couldn’t read, I wanted the pictures to give the readers the ability to create their own stories or words.

      I, myself, have disabilities and illnesses. I have Diabetes Type 1, arthritis, fibromyalgia, hypothyroid, migraine headaches, brittle bones, severe acne and asthma. I also have mental health illnesses like OCD, Depression, phobias and anxiety. I have been in special education since I have been 2 ˝ years old because of my learning disabilities. My learning disabilities are Language Processing Disorders. This means is that I learn different than other kids. When I was real young, I was very hyper and sick a lot. I had ADHD (Attention Deficit and Hyperactivity Disorder), I would get lost for hours on my parents. When I was 8 years old, the doctor wanted to put me on medicine is when they find out about my Diabetes and everything else. I am now 15 years old and struggle with having chronic pain in all my muscles. I go for physical therapy 2 times a week and pain treatments 3 times a week. I miss a lot of school each year due to my health and my mental illnesses. It causes me a lot of stress.

      Most of the time, I feel lonely because other kids don’t understand me. My friends are other kids with disabilities. I cry and get sad a lot because I want to do things like other kids my age but I feel left out. One day, I hope to find a friend who will appreciate me for who I am and NOT for who I am not. My best friend isn’t allowed to see me because of me and my families’ mental illnesses. This really hurts me because OI am rejected for something I cannot change. I wish someday my best friend and I can get together and be friends for who we are in our hearts. My whole family has mental illnesses. We are loving and caring. We support each other. My sister is in college. My mom works full-time and my dad works part time. I want others to know what people with mental illness can be kind and gentle, just like everyone else.

Thank you,

Amber


**Do you sometimes feel like Amber? Would you like to be a penpal to her? To share your story or send Amber an email, send it to
Julie@fvkasa.org


     
     

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