Hi! My name is Emily and I am currently 12 years old. I turn 13 in July! I am in the 7th grade so basically during the week my days starts and ends with school.  On the weekends I get to sleep in (which is my favorite) and I usually stay in bed until my parents make me get up. I do not have any siblings but I have two dogs. One is more like my dads dog, his name is General Sam Houston (We call him Sammie) and the other dog is mine, she is a Maltipoo and her name is Stella. She is about 5 lbs. She just turned one in March. I am in debate in school, and I love being able to argue and win awards for it. I want to continue in debate and do it competitively in high school as well.
I enjoy video games and my favorite game series is The Legend of Zelda! I am pretty much an expert on the topic 🙂 My dad and I always try and beat each other at those games. We are very competitive. 
Summer time is my favorite because of all the things I get to do. Every year my family goes to Garner State Park and that is a lot of fun. I also get to go to Camp for All it is in Texas and on the week that I go it is for kids like me with skin conditions. My favorite thing to do there is the zip lining and this year I am old enough to do the ropes course, I am finally old enough this year! I love being able to go to camp because I’m able to see all of my friends.

My Intro!

Hi everyone!

My name is Talia and my hometown is Ridgewood, NJ. I was originally from West Palm Beach, Florida. Now I am living in Massachusetts. The school I am at is Riverview and I love my school because I want to learn more about my friends and what they like to do after school. My family back in Jersey is Joey- 17 years old and a senior in high school- likes to play video games, Caroline-15 years old and homeschooled- likes to draw, take pictures, paint, dance, and make YouTube videos, Dad-works in Toms River, NJ every day, Mom-works at Positive Exposure every day, and Katie -my longtime best friend since STA started. My pets are Bo the Fox Red Lab-he is so adorable and fluffy, and Millie the English Black Lab-she is so sweet and cute. I miss my dogs! Bark, bark! My hobbies and interests are singing, dancing, acting, musical theater, mindfulness moments, art, yoga, Zumba, karate, eating at the Breakfast Cafe with my boyfriend and friends, open gym, social parties, Project Forward dances, watching my boyfriend playing basketball, advocating for myself/others and writing my blog because it is really awesome and trying to be in my comfort zone. My favorite foods are turkey burgers, veggie burgers, pizza with pepperoni, macaroni and cheese, cheerios, cheesecake, strawberry shortcake, and Oreos because they are always very delicious even at school. I actually had a turkey burger for lunch today and it was very healthy-trust me!  My favorite music and groups are Sweet Home Alabama by Lyndnard Skynard, ET by Katy Perry, Young Blood by 5SOS, Break the Rules by Charli XCX, Fancy by Iggy Azelea and Charli XCX, Problem by Ariana Grande and Iggy Azealea, Love Story by Taylor Swift, Sweet Caroline by Neil Diamond, Island Girl by Elton John and I’m Still Standing by Elton John because they are so talented and great singers of all time. I have traveled to Sweden, Denmark, France, Czech Republic, Canada, Bahamas, California, Florida, Colorado, Utah, Texas, Oklahoma, Massachusetts, Connecticut, Pennsylvania, Ohio, Indiana, Illinois, New York, New Jersey, Rhode Island, Maryland, Vermont, Maryland, Michigan, North Carolina, South Carolina, Georgia and Washington DC. I want to live in Sweden after Riverview because it is so pretty and gorgeous outside. My future goals are focusing in class, no falling asleep in class, being on time every day, speaking up for myself and others because I want to make this world and Riverview a better place including Positive Exposure. A favorite saying of mine is “I’m not afraid to write my feelings in songs.” -Taylor Swift because it is truly inspiring and it helps me do my thing in the comfort zone.

Rasheera’s Intro

Hi there, my name is Rasheera Dopson and I was born with a Rare Disease: Goldenhar Syndrome and VATER Syndrome. Over the course of my life I have had 101 operations. I’m 26 years old and I live in Atlanta Georgia. Currently I work part-time, I do a lot of policy and advocacy work for the rare disease and disabled community. I absolutely love doing this type of work. It’s really a calling. I guess some would call me an entrepreneur. When I’m not busy fighting for justice. I enjoying blogging and watching action movies. A few years ago I started a blog series entitled “ Beauty with a Twist” I chronicle my life experiences in living with a chronic health condition and disability. My desire is to share my life story with others encouraging them that their difference can change the world!

About Megan

Favorite activities: Taking pictures, sewing, baking and painting nails.

Favorite TV Show: How I Met Your Mother

Favorite Movie: Footloose (80’s)

Favorite Type of Music: Country and 80’s music.

Favorite Subject in School: Math

Favorite Food: Chicken

Siblings: Michaela and Taylor

Pets: 2 Dogs; Emma and Carmella & 1 Cat; Patches

I am a senior in High School. I moved from a town where my graduating class was 1500, to a town where my graduating class is 90. I have Alopecia. I love nature and being outside. However, I hate bugs. I am thinking about becoming a Pediatric Dermatologist with minors in Spanish and Photography.

Intro Paragraph

When I am not in classes or doing homework for grad school, I love hanging out with friends, playing piano, writing, and serving in the disability ministry at church. Part of the reason I am pursuing a music therapy masters equivalency degree is so I can help other people with disabilities since I have albinism. Far from holding me back, having this disorder has given me so many opportunities to participate in public speaking, writing, relating to other people with disabilities, and getting to know incredible people.

Alexianna’s Intro

Hi I am Alexianna but most people call me Lexi. I’ll be in 9th grade this year. I am 14 years old, my birthday is on January 7th. I was born with a syndrome called Treacher Collins. I’m missing the middle part of my ears as well as having little closed ears (microtia/atresia). I hear with a Baha Attract (hearing aid). I used to wear my hearing aid attached to a headband but then I decided to have surgery to get the Baha Attract, which means I have magnets in my head to hold on the hearing aids. I’m missing some bones around my eyes and I have a small jaw which causes breathing issues. I will possibly be having reconstructive surgery on my jaw next year.

I am a percussionist in Marching Band and I play the bass drum. My brother plays the quads and is the section leader. We just had our first parade of the season last Friday….it was so hot! I used to be in gymnastics, and even though I no longer attend classes, I still workout, lift weights, flip and stretch. I’d be lost without my trampoline. I absolutely love animals, we have 2 dogs (Sorsha and Kiara) and 2 cats (Patchy and Kiki) if my mom would allow we’d have more. When I’m older I want to do something involving animal rescue and possibly be a fitness instructor. Some of my favorite foods are tacos, pizza and chimichangas.

I have 7 siblings, Nicholas, Audrina, Natasha, Sheila, Milynn, Matthew and Mckayla. I also have 3 nieces, Alaina, Gianna and Harper and 2 nephews, Benjamin and Liam. I live with my mom and brother Nicholas, who is 17 (he’s a senior this year), and is my best friend.

This summer I’ve been chillin’, working out, having cookouts and teaching my dogs new tricks.

Maggie’s Favorites

Favorite Hobby: Shopping and Baking

Favorite TV show and/or movie: The Flash (TV), Teen Beach Movie (Movie)

Favorite band and/or type of music: R5 (Band), Pop Music

Favorite Subject in school: Theater

Family Members: Glen Saum- Dad, Debra Saum- Mom, Anna Saum- Sis

Favorite Food: Penne a la Vodka

Pets: Socks Emerus Saum (Standard Poodle)

Lucia’s Introduction

Hi my name is Lucia.  I am from Canberra, Australia. I like to sing, dance and love learning about new things. I am also passionate about making the world a better place.  I am doing a lot of things at the moment.

I am working in the retail sector at a shoe shop near where I live and like helping customers try on shoes/recommend products.

I am also studying a Diploma in Library and Information Studies and would like to get a job as a library technician or assistant soon.

I am passionate about the environment and want to stand up for climate change, this is why I am volunteering at a youth lead organisation called the Australian Youth Climate Coalition. I am the outreach volunteer where I let everyone know about the organisation.

…… and I also happen to have a chromosomal abnormality.

My Favorites

Favorite activity/hobby: listening to music, drinking coffee, spending time with family and friends, reading

Favorite TV show and/or movie: The Unbreakable Kimmy Schmidt; You’ve Got Mail; anything Disney

Favorite band and/or type of music: alternative/indie; vocal jazz (like Tony Bennett); Broadway musicals (HAMILTON!)

Favorite subject in school: Math and Technology

Family members: Mom and Dad, brother (Carlos)

Favorite food: eggs benedict, macaroni and cheese, anything chocolate

Pets: Pet dog (Rascal); guide dog (Romana)

Cassandra’s Introduction

My name is Cassandra! I’m a second year college student studying computer science and engineering at Ohio State University in Columbus, OH. I’m obsessed with coffee, lipstick, and music. On campus I’m involved in h20 (a church on campus), in a sorority, and an honors society for engineers. Off campus, I’m involved in several advocacy/education groups for my various conditions pertaining to my rare disease, Hermansky-Pudlak Syndrome. I’m often loud, optimistic, excitable, and spontaneous, as well as snarky, cynical, witty, and passionate. More often that not, I’m very “go with the flow” and am chronically late to almost everything. I love Disney and my spirit animal is the phoenix. I’m a firm believer in living your life with no regrets and finding a place where you are celebrated for being you.

I also have a guide dog! Her name is Romana, and she’s a two year old yellow lab from Guide Dogs for the Blind in San Rafael, CA. She and I have been taking on the world together since August 2016. She loves to work (by taking me places), and when her “shift” is over, she enjoys running around, playing tug, chewing bones, getting pet, and sleeping. Since she’s a service dog and allows me to be more independent, she’s allowed to go everywhere with me and shares a room with my roommate and I in our sorority house.

Amy’s Introduction

I like going to Disneyland and to movies. I love to surf- it makes me feel like flying! I love to go to conventions like Comic Con and dress up in cosplay. My rare disease is called xeroderma pigmentosum/trichothiodystrophy(XP/TTD). Yes, it’s a long word. It means I have to be very careful with sunlight among other things. I like to set goals and reach them. I think if you believe you can do something, you can do it!




Ally’s Intro

Hello. My name is Ally. I am a senior in high school. I am in high school. I live at home with my mother, father, two younger sisters and younger brother. I am looking forward to taking some college classes at my local community college next fall. I enjoy playing sports at my high school. I play field hockey in the fall.   We just finished our season. I am also looking forward to playing lacrosse in the spring. I also love music. My field hockey coach said I was the resident music expert 🙂

Eli’s Intro

Elizabeth, or Eli, is 11 years old and in the 6th grade. She was born in China and now lives in NC, USA. Eli is an elite AllStar cheerleader and loves to tumble. She is also learning to play the flute. Eli is active in youth group at church. She loves reading and math at school. She has two dogs and a bearded dragon at home. Eli also wants to be a model. Eli has oculocutaneous albinism type 2.