Profiles of Adults with JS

What I’m doing: I am currently a research assistant at the Vanderbilt Kennedy Center and for my program that I went to called Next Steps at Vanderbilt too. I put data in the computer, I type up articles for the NS newsletter.

Greatest successes: Graduating Next Steps and getting a job after graduation.

Greatest challenges: Not knowing if I was going to college and having a job and moving from Saint Louis to Nashville and not knowing anyone before I got there.

Interests: Shopping, exercising, and reading.

What I’m doing: Working part-time at a restaurant called Taziki’s.

Greatest successes: Getting inducted into the National Honors Society, Homecoming queen my senior year, and graduating with honors from High School.

Greatest challenges: Becoming independent.

Interests: Reading, electronics, and spending time with family and friends.

What I’m doing: I am finishing up my last year of school, eager to start a job, and hope to move out and live with my sister by end of summer.

Interests: Hanging out with friends and volunteering.

About me: My story is a little different because I have an identical twin sister who has the same thing and I did not find out I had JS until I was around 24.

I knew I had the eye disability right away because of the balance issues and the hand-eye coordination issues. I have always had anxiety and depression and had to have special classes in school, but in 2009 I had a car accident and I had to get and MRI because I was having more frequent headaches and thank god the nurse who was reading the MRI machine had seen the molar tooth somewhere before so she knew what it was.

After that my whole world changed in a way because I could understand now why I felt like I felt with the pain, anxiety, depression etc. I also had a son before I realized I had this syndrome and he is the greatest gift I could ever ask for! He is perfectly healthy and I’m so glad he does not have to live with this syndrome.

What I’m doing: I am working part-time for the government doing data entry, research, and administration. I am also sitting on the Board of Directors for the JSRDF.

Greatest successes: Getting a job, attending and graduating from college, and travelling independently.

Greatest challenges: Dealing with frustration and looking for a place of my own.

Interests: Writing, reading comic books, and watching movies.

About me: Being a mom with Joubert Syndrome is very hard. My fine motor skills along with many other things makes it hard to parent without help, therefore I live with my parents. I do want to live independently and hopefully someday I will. My kids, so far don’t have Joubert Syndrome.

What I’m doing: I work at a cafeteria at school (before COVID).

Greatest successes: I finished high school.

Greatest challenges: Spelling sometimes.

What I’m doing: I am currently taking classes at Montgomery College, the Rockville campus. My major is undecided at the moment. I am also hoping to go to a vet tech training program for ten weeks.

Greatest successes: Graduating high school and traveling by myself by plane and metro.

Greatest challenges: Time management and handling my emotions in public.

Interests: Swimming, playing cards, baking, and art.

What I’m doing: I am currently a Freshman at Northern Virginia Community College in Alexandria, Virginia and planning to transfer to Shenandoah University in Winchester, Virginia to study Music Therapy.

Greatest successes: Graduating high school last year and travelling independently to and from college.

Greatest challenges: Keeping up with the pace of college life along with practicing my instruments.

Interests: Playing music (Piano, Percussion, Guitar, Singing), Watching baseball games (Go Washington Nationals!), and playing video games (especially Major League Baseball ones).

What I’m doing: I’m currently finishing a couple of university courses I didn’t have time to finish back when I last had a job (last summer). Other than that, I’m bracing myself for summer (always a very bad season for me due to my inability to cope with heat, and my tolerance level only seem to be lower each year), as well as keeping myself from getting Covid-19. I’m thinking about starting up another business (I had one before, designing websites for customers and providing support to them, as well as helping elderly people install printers, move pictures from digital cameras onto their computers and stuff like that, but had to close it down in order to get an internship).

Greatest successes: Getting my bachelor’s degrees in Computer Engineering and Computer Technology and landing two (real) jobs so far.

Greatest challenges: Coping with any kind of heat or sun. My tolerance level seems to get worse every year, and due to global warming it gets warmer every year — not a good combination. Other than that, I don’t know, but all the other general disability related stuff.

Interests: Computers and programming (obviously!), gaming (both on computer/console/mobile and tabletop), movies, music, following and discussing politics and society. I have many interests, though I often only have time for programming and playing games, maybe watch the occasional movie.

Interesting fact: I was diagnosed at around 12-13 years old. In my county, the hospital didn’t have a magnetic resonance X-ray machine, so I had to go to a bigger regional hospital to get one. My doctor sent the images from that X-ray to colleagues in Canada and it was them who were able to diagnose me. At the time, there were only two other people with Joubert Syndrome known in Sweden.

What I’m doing: Payroll Specialist for a coal company.

Greatest success: Being independent.

Greatest challenge: I can’t really think of one. I deal with small challenges every day that I just overcome without recognizing they are challenges.

Interests: Fishing, cross stitch, puzzles, and being outdoors.

My accomplishments: I published two poetry books, Stories of An Emotional Man and Inner Thoughts of A Man With A Disability. They are both on eBay. My plan in the near future is to make a website for my poetry. The reason I want to pursue poetry is because when I was younger, I didn’t know how to express myself.

I have a website, if you want to book me for a speaking gig. I also have t-shirts that I sell and two percent of the sales of the t-shirts goes to the JSRDF.

Interests: Poetry, going to the movies, listening to music and eating.

Early life: I was diagnosed with hypotonia when I was a toddler. I did not start walking until I was three years old. I had very low muscle tone and had to go to physio therapy on a regular basis when I was young. All throughout my elementary school years I was in learning assistance classes. Once I had reached high school I was taking regular classes but had support from an aide if I needed it. I also had a lot of help and support from my family. With a lot of hard work I was able to achieve a lot of things. I was able to get my high school diploma.

Adulthood: After graduating high school I moved to Calgary with my family. I ended up getting accepted into college, where I took a course called Transitional Vocational Program. I was the Valedictorian of my class. My first job, driver’s license, and moving out with a roommate followed after. Eventually I ended up moving back to Vancouver with my family. I got married when I was 38, and have a handsome, beautiful, healthy 6 year old boy.

What I’m doing: I am currently in high school doing a special program for people who wanna be independent with special needs.

Greatest successes: Getting a definite remote interview with Mercer County Community College.

Greatest challenges: My eye issues and the fact that I have this tic where my legs uncontrollably twitch.

About me: I am running for JS because I will get JS out in the world because it is under-diagnosed. I run 10 km and half marathons.