The Self-Advocate Council (SAC) was formed in 2006 and is comprised of current NDSC board members, as well as former board members from the last decade. Most of the Council members have three years board experience. All were elected by their peers to the NDSC Board of Directors.
The SAC will serve the NDSC in several ways. The Council has decided to expand the Self-Advocate Book Project, advise the Youth and Adult Committee and be a self-advocate voice on issues of national and local discrimination.
Council Members are listed below:
Pete "Swayze" Asplundh
My name is Pete "Swayze" Asplundh. Patrick Swayze is my role model and that's why I have named myself after him. Right now I am 39 years of age, going on 40. I am still large for my size unlike other young men who have Down Syndrome. Right now I am 5' 10" in height, the same height and size as Patrick Swayze. I am kind of muscular, lithe and well-coordinated.
Just to tell you a little about me, I live in a house next door to my parents. Sometimes I cook meals and sometimes I order in. I mow my lawn and my parents' lawn in summer, and I shovel the snow in winter. I am the manager/supervisor/enforcer of fitness of the Body Shop-Bryn Athyn's community fitness center. I keep the Body Shop neat and orderly.
I have many varied interests. Right now I am into the entertainment and film-making business, and I have books on that particular subject matter. My niece made a movie about me in her film-making school class in London. I went to London with my parents for the shoot. We shot on location in various London neighborhoods. I also believe in different forms of religion such as Zen Buddhism and Transcendental Meditation. And I am interested in the Martial Arts.
My mother encouraged me to take dance classes. I started with ballroom basics in my twenties. Most recently I have studied Tap, Salsa, Ballet, and Modern Dance.
In my teens I participated in Special Olympics in track and field, downhill skiing and basketball. After watching my sisters compete at a horse show I became interested and took lessons for 10 years. I learned to walk, trot and canter. I even groomed my own horse! Currently I enjoy working out with a fitness trainer once a week. I think part of my athletic ability is due to all the time my mother spent "patterning" me as an infant and toddler.
My parents also encouraged me to participate in local theater productions. I have been in several plays, including, West Side Story, Yeoman of the Guard, Our Town and Night of January 16th. I went to New York to audition for the television series "Life Goes On." I came close, but I didn't get the part.
I have been a member of the NDSC for many years. I have served on NDSC Boards several times over the years. Also, I have done workshops like the Art of Making Hoagies and even on the subject of dance.
Carrie Bergeron-Desai
Carrie is a thirty-year old yound adult with Down Syndrome from upstate New York. She radiates joy and warmth when you meet her. This trait has been evident ever since she was a hypotonic infant with a wobbly head!
Carrie is presently in a NYS Self - Determination transition plan, living in Rome, NY with her husband. She is married to Sujeet Desai. They were married this past July in two lovely ceremonies, one Hindu and the second Christian and are settling into their new life together. They have staff support with their daily routines and are doing very well in this transition time.
Carrie volunteers two days a week at the Upstate Cerebral Palsy Center working with toddlers. She received a two - degree (obtained in four and a years) from Herkimer County Community College as a teacher's assistant in 2003. She also, volunteers at the Rome Memorial Hospital three days a week doing office work and helping out with the Tai Chi program on the geriatric floor. Phyiscal fitness is maintained by daily visits to the local YMCA plus two classes in Tae Kwon Do (maintaining black belt status), music, and dancing.
She is a former board member of the National Down Syndrome Congress Board of Directors and now serves on the Self Advocacy Committee and the Youth and Adult Committee. She loves to share her experiences as a young adult with Down Syndrome. Carrie and her husband, Sujeet, will continue to present at conferences. They radiate their love for each other and also complement one another with her flair for speaking and his flair for music, making a wonderful lifelong team!
Jennifer Cunningham
Hi, my name is Jennifer Cunningham. I live in Worthington, Ohio which is a suburb of Columbus. I went to public school and graduated in 1995. I worked at Krogers fulltime for seven years before I was fortunate enough to get a part in a TV movie. At that time I moved to Vancouver, Canada to live for 9 months. It was a wonderful experience and a lot of fun.
Now I am back home in Worthington. I have a parttime job as a clerical aid at our local MRDD Office. I love my job.
I've been involved with Special Olympics since I was 8. I've always been in gymnastics, but some of the time I've done swimming, weigh lifting, and skiing. I was on my high school gymnastics team too.
I have attended every NDSC Convention since I was 15. I love going to the Conventions and seeing friends from around the country.
I have a boyfriend and I am engaged to be married. My fiancée and I like to play video games, watch "Deal or No Deal", join young adult groups, and belong to a local church group.
Austin Davenport
After attaining the rank of Eagle Scout, Austin Davenport graduated in 1998 from Lake Highlands High School in Richardson ISD Dallas, Texas where he was active in theater, choir, as well as visual arts. He attended Richland College, also in Dallas, where he continued his study of theater. Austin has performed in over twenty plays in the area. He has spoken encouragement as a self-advocate to many groups around the country and has served on the Boards of the National Down Syndrome Congress and the Down Syndrome Guild of Dallas. Austin loves his church where he is active with the singles group and sings in the choir. Austin works full time at DocuCorp International as an assistant clerk in Dallas and lives on his own in his duplex which is a block from his church, his bank, Blockbuster, Tom Thumb, several restaurants, and Marble Slab.
Chris Devlin
I was born on February 11, 1967 in New York City. My parents, John and Eileen, took me to a lot of weekend programs. I also attended pre school programs. When I was a little boy, I enjoyed visiting my nanny and sitting by her widow and watching the fire trucks go by.
In 1974 I moved to a house in New Jersey, and my brother, Brendan was born. I loved playing in the neighborhood with friends. I could ride my big wheels around the block. I went to school in Fair Lawn. In 1977 my brother, Colin, was born.
When I was sixteen I moved to a group home in Greenbrook and graduated from Bridgewater High School.
I presently live in a supervised apartment in Brick, NJ. In a few weeks I will be moving into my own apartment. It is beautiful. It has one bedroom and a very big living room and kitchen. It has a balcony, too. I am really looking forward to moving into my own place.
I attend a workshop in Pleasant Plains. Sometimes I go out to jobs with Don who is a really funny guy. On Mondays I bowl with a group. I also attend a drama club called Spotlighters. Last April we presented a show called "And the Winner Is." Occasionally we take trips to Atlantic City.
Several months ago I joined Weight Watchers, and I am proud to say that I have lost 34 pounds - just in time, too, because Colin is getting married this month in Puerto Rico, and I will be the co-best man.
I enjoy attending the Downs Syndrome Conferences. I have a lot of great friends there.
Tracy Hile
Hello, my name is Tracy Hile. I live near Houston Texas. It is very hot down here and it never snows. I am 37 years old and live in an "apartment" in my parents' home. I take care of myself: do all of my own grocery shopping, cooking, cleaning, paying bills and scheduling activities and really enjoy LIFE!
My hobbies are playing golf, listening to music and writing letters. I write letters to our troops and help my mom pack baggies of treats to send to them each month. I sing in the choir at my church and have made the choreography tryouts for the past 5 years. I go to a singles bible study every Friday night which I enjoy every much. I have two younger brothers who have very nice wives and they both had new babies this year-that means I will be: Aunt Tracy for the 5th time!
I have been a teacher's assistant for 15 years. I have worked in three different school districts in the Houston area. Last year I received an award called the A B C D (Above and Beyond the Call of Duty) award It was presented at the school board meeting; my boss and co-workers were there and presented me with a beautiful corsage. I was very happy to get this award for my job. I work in the Teen Parenting Program to help the mom finish school so that they can graduate.
I am moving to Arkansas. I have wonderful friends in the area. I have a job that I like very much it is peaceful and quiet in Murfeesboro and have my own house with a guest bedroom.
My most favorite trip was a dream come true. I waited 16 years after graduation for this trip. I had the best time. We stayed in a condo in Maui, Hawaii this October.
Laurie Hobson
My name is Laurie Hobson and I am 22 years old. I am from Memphis, Tennessee. I live with My Mom, My Brother and My Grandmother.
I graduated from Houston High in 2006. My senior year, I was a cheerleader. I loved cheer! I took French and Theatre. My favorite subject was P.E. I miss my High School.
My last year at High School, I started working at Kroger. I bag groceries and bring carts in from the lot and visit with all my friends. I like it.
Some of my activities are: bowling, dancing, socializing, listening to my CDs and watching my DVDs. I also like basketball. I dance in a dance group called Company d. We practice twice a week.
I attend Weight Watchers; it has helped me to loose weight.
I have a boyfriend, his name is Kenny. I went to my Senior Prom with him.
This year I got elected to the Board of the National Down Syndrome Congress. It feels so good to be on the board. I wanted to be on the board because I know about Down syndrome. I love the conventions because they have dances, a banquet and fun stuff to do!
Christi Hockel
My name is Christi Hockel. This Christmas I will turn 28 years old. I have lived all of my life in Walnut Creek, California. I am a courtesy clerk at Safeway where I like to talk with the customers. I live in my own studio apartment which is attached to my family home. I am known around here as "Auntie Christi" because I love my 23 nieces and nephews.
I graduated from Northgate High School with a diploma in 2000. I learned to drive and have a license. I go to Diablo Valley College, where I have taken lots of dance and drama classes (along with P.E. classes, Spanish, Music Literature, Sign Language, and Voice & Diction). My GPA is 3.9. For two semesters, I was a teacher's assistant in the beginning drama class. I love to perform and I keep working on my monologue!
I have taken piano lessons, singing lessons, and sewing lessons. I know how to cook lots of things. Right now, I am working on losing weight! I love to draw and make things with beads. I watch television a lot. I like to watch movies, sports, and old shows. I go bowling with my friends once a week, and volunteer at the hospital for almost 600 hours. I have a boyfriend who lives in Texas, and we spend a lot of time on the phone, and flying back and forth for visits.
I was a Board member of the NDSC from 2003-2006. Now, another door opened for me. I get to be on the Self-Advocate Council and talk with people with many different ideas.
Lee Jones
My name is Lee Jones and I was born in Hong Kong. When I was 7 months old my parents and I moved to Kansas City. I am 31 years old and have lived here most of my life.
In 1995 I graduated from high school and entered Graceland University in Lamoni, Iowa. I really enjoyed my years there. I won the Homecoming King election my junior year. This was my most exciting moment at Graceland other than my graduation on Mother's Day in 2000. I earned a BA in Recreation with a minor in Theatre.
After graduation I took a job in Arkansas. I lived there for three years. I loved the town and being on my own. I made many new friends, was active in my church and joined a community theatre group. The only thing that I wasn't happy with was the fact that I was not using my college Degree.
Three years ago, I moved back to the Kansas City area. I am currently employed at the YMCA where I work as a Fitness Attendant, Personal Trainer and Membership staff. I also work part time at Sylvester Powell Community Center. I am part of the Weight Room/Facility staff. Once a week I teach "Fitness with Lee", an exercise class for people with disabilities.
I enjoy working on the computer, reading, playing golf, watching WWE, visiting with friends, traveling, scuba diving and watching TV. One of my most enjoyable volunteer activities is serving on the board of the National Down Syndrome Congress. I was elected as a board member at the 2004 Conference in Minneapolis.
Meridith Martin
I am Meredith Martin, a 24 year old self advocate from the small Northeast Nebraska community of Neligh I attended elementary and high school here and graduated with the Class of 2000. After graduation, as my friends were heading off to college, I knew I wanted to go somewhere, too. So, I left my parents home and moved in to my own apartment. Although I did not have a roommate or even a pet, I did enjoy my new feeling of independence (once my cable TV was connected).
When I was in second grade I decided that I wanted to become a nurse. Although I have not met that dream yet, I am working at our hospital as an office aid. Some days I do get to help the nurses out on the floor or assist in cardiac rehab. Those are my best days at work. I also work two other part time jobs. One is at our grocery store and the other is at an assisted living facility. I am happiest when I am busy and out and about in the community.
I have not given up on my dream to be a nurse.
One goal that I have had since I was about four was to get a drivers license. Once I moved into my apartment, I hated to have to keep calling my parents for rides to work, so I hired a driving instructor. I soon had my drivers license and a whole new feeling of independence!
I am active in my church and community. I enjoy kickboxing, Pilates and I walk and ride my bike a lot. I am always ready for a shopping trip or a chance to do lunch with friends. Dancing is a passion, so NDSC conventions are a real treat since there are no discos in my town. I love to fish and spend time boating with my family. One of the things that has shocked my mom the most is how I have started to enjoy cooking and trying new recipes since leaving home. I do invite my parents over often for an evening meal.
I have so enjoyed attending the NDSC conventions through the years. I have met so many wonderful people who have inspired me to work even harder, to continue to dream and set new goals. At the 2006 convention I was elected to the NDSC Board as a self advocate. That was an exciting moment. I am enjoying having an active part with this fine group of people. I feel we have a real message to share and I will work to be a positive force in getting out the encouraging news that we have about Down syndrome.
My S.T.A.R. philosophy is one that has served me pretty well so far: S--Surround yourself with positive supportive people; T--Teach others about your disability (or abilities); A--Always advocate for yourself and others; R--Reach for your North Star!
Patricia Moody
Hi! My name is Patricia Moody. I am 25 years old and I live in Vero Beach, Florida with my parents. I have a very special relationship with my grandmother who used to be a teacher. She believed I had possibilities and she taught me to read and write. When I was in 3rd grade, I was fully included in my neighborhood school and graduated from Sebastian River High School in 2003. Then I worked for three years as a classroom aide in our public schools. I worked with students who had disabilities and the kids called me “Miss Moody.”
My hobby and my passion is sign language. When I was a teenager I began teaching myself to sign by reading American Sign Language books and watching DVD’s. I loved sign language so much that I wanted it to be my career. In 2007 the National Down Syndrome Society awarded me with a college scholarship and I took ASL I and II and made A’s in both classes.
Now I am fluent in American Sign Language (ASL) and I am self-employed as a teacher of ASL for our local ARC, the Sun-Up Center for Developmental Disabilities and I also co-teach at our public library. My classes always have music and fun and everyone learns.
Music is a very important part of my life. I have taken voice lessons for three years and I have combined singing with sign language and I have performed the National Anthem for several Special Olympics state competitions. I love my church and sang and signed this year.
I am a speaker for conferences and meetings. I was the keynote speaker for the Down Syndrome Association of Central Florida in 2007. I am proud to be an advocate for people who have Down syndrome.
My friends at the NDSC conventions are so special to me. I am so happy that I got to teach sign language at the workshops. We all had fun together. Making friends and having fun is what I am all about.
Kristin Nichols
Kristin Nichols was born in Grand Junction, Colorado, on June 7, 1970. She currently lives in Littleton, Colorado. Kristin has been living alone in her own apartment for over six years.
Kristin lives a very active live. She works as a hostess at a Le Peep Restaurant. She is a traveler and likes to learn about other cultures. She has been to England, Wales, Italy, France, and Switzerland. She snorkeled in the Caribbean, kayaked down a jungle river in Belize, swam with dolphins in Roatan and with stingrays in Grand Caymen. She had her nose pecked by a toucan in the Amazon rainforest in Brazil and marveled at the beauty of Machu Picchu in Peru.
Her loves are music and movies. She loves to dance to music, listen to music, sing along to it, and learn about musicians. She also loves to play music on the piano. She likes to watch and buy movies and has hundred movies in her collection. During her free time she makes latch hook pillows and rugs and is learning how to use beads to make jewelry.
Kristin loves being a public speaker and talks to groups about what it is like to have a disability and about how to be independent. She has also served on boards of directors for national, state, and local organizations. Kristin leads a full and meaningful life.
Melissa Silverman
Hi! My name is Melissa Silverman. I am 24 years old and live in Owings Mills, Maryland.
I graduated from high school in June 2001with a full academic diploma from the State of Maryland. I attended 2 years at the Community College of Baltimore County where I earned a 90-hour child care certification. I am a teacher's aide in a pre-school where I work with 3 and 4 year old children.
I am a member of the Chesapeake Down Syndrome Parent Group and the "Circle of Friends" ("the girls club"). The "Circle of Friends", along with the Kennedy Krieger Institute and Amy Newhall, started the Brightside Project in the spring of 2006. The Brightside Project is a group of young adults with Down syndrome who mentor younger people, also with Down syndrome.
I enjoy speaking to various groups such as parents, teachers, future teachers, graduate and high school students and religious groups about Down syndrome. My speeches always include what terrific possibilites there are for people with Down syndrome and I use myself as a positive example. In addition to this, I always make magic a part of my presentation because my dad and I perform professionally all over the country.
My hobbies include country music, magic, swimming and theatre, and I have a very large collection of Hard Rock Cafe signature guitar pins from all over the world!
Jeremy Williams
My name is Jeremy Williams and I live in N. Myrtle Beach, South Carolina. I grew up in Raleigh, N.C. and lived there for 23 years before moving here 10 years ago. I live with my Mom as my Dad passed away six years ago. Before that I lived in our beach house for five years by myself. I like living with my Mom and we travel a lot together.
After I graduated from High School I worked for Manpower and did many kinds of office work, like mail sorting and time slips. Then when we moved I needed to get to work by myself on my bike so I started nine years ago at Kroger Grocery Store. I am a customer service clerk and I enjoy many friends at work and with our customers.
I have been a Global Messenger with the Special Olympics and did a different sport each season. In 1995, I went to the World Games in Gymnastics. Now I like to workout on my own in our Aquatic and Fitness Center. I belong to the Civitan Club, and am a 4th degree Knight of Columbus. I am on our Relay team for fighting Cancer and help to raise money.
This year I traveled to New York, Iceland, Denmark, Finland, Russia, Norway, Estonia, Poland and Hawaii. I especially have enjoyed being a part of the Self-Advocates Council and being on the board of directors with the National Down Syndrome Congress. The conferences are a lot of fun and I like meeting my friends there.
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