April 21, 2008 I had to go into the hospital at NYU Medical Center because I had to change medications to control seizures I have been having. Even though I hate being in the hospital and hooked up to all this equipment, people there were really nice, and lots of friends visited me which madeit much more fun.
Check out my photo album where you can see all the people who came http://samanthamyers.typepad.com/photos/hospital_stay_2008/, plus the nurse Jennifer who brought me such a cool necklace on Saturday, right before I left.
Sync or Swim!!
On Saturday, March 14, my mom and I went to a fundraiser for a totally great documentary film, Sync or Swim, by our friend Cheryl Furjanic. We danced (it was a dance-a-thon). We bought a lot of raffle tickets and I won
an autographed copy of Entertainment magazine signed by Jake Gylenhaal! Here I am after I won.
Check out the pictures of the dancers and don’t forget to check out the film!!
Samantha’s letter published by Disability Culture Watch
The New York Times Once Again Ignores Important Issues
Recently a comrade, Samantha Myers, submitted this wonderful letter to The New York Times and they didn’t have the wisdom to publish it. But here it is on Disability Culture Watch.
Sam on YouTube!
Lily made this great little video about Sam for one of her classes at Brown. Watch it on YouTube! It’s short — enjoy!
Blue Genes Fashion Show raises $250,000 for FD research
The fundraiser was great. We raised a quarter million dollars! I was in the fashion show. My Mom bought this outfit for me: pink tie-dye shirt and dark pink pants.
Sonia and Lily sang two songs: "Somewhere Over the Rainbow" and "Forever in Blue Jeans." I introduced them:
"Two amazing vocalists who have performed in New York City and New England and I share my best genes with them. Please help me welcome my cousins Sonia and Lily Szajnberg."
They sang without accompaniment, just them. My cousin Steve took a lot of pictures.
One of my teachers came to the event, which was incredible. She was really impressed. She had a lot of fun. Dr. Axelrod came too, which was really amazing.
I came home around 8:00. I was really tired.
Samantha in Washington, DC
I went to Washington, D.C. While my parents were at the American Anthropological Association meetings, I went shopping with Rachel. We shopped in Georgetown and Chinatown. I got a charm telephone and a telephone necklace in a store in Georgetown. We ordered room service a couple of times. We ordered macaroni and cheese twice. It was delicious. The first night I ordered a grilled cheese, because I was starving. Last night I went to a restaurant in the hotel. The food was really good. I had a Chesapeake crab cake. I liked it. I saw two movies: August Rush with Robin Williams and Enchanted with Patrick Dempsey and Amy Adams. Enchanted was better. It was really funny. I also read Dear America. I had that book for a while but never had a chance to read it. I had to finish some math homework. Tonight I’ll study for a vocab quiz that I will take tomorrow.
Samantha writes a letter to the editor (NYT)
Here’s hoping the New York Times will publish Sam’s letter!
To the Editor:
I love hearing about great design stores in
my neighborhood. Your article (“Where Design Heads Double-Dip”, November 22,
2007) inspired me to head out in my wheelchair to check out the new stores Muji
and CB2. When I arrived there, steps at the entrance to each store made them
totally inaccessible for someone like me. Clearly, they do not understand the
principles of universal design or the Americans for Disabilities Act. I hope
that when the NY Times reviews stores, it remembers to address the question of
access. Perhaps a reporter would like to understand what it’s like to shop from
my position.
Sincerely,
Samantha Myers
3 Washington Square Village
(Apt. 14M)
New York, NY 10012
Day phone: 917 991-3544
Evening Phone:
212 979-6721
The writer is 18 years old, lives in Greenwich Village, and has
the rare genetic condition, Familial Dysautonomia
Happy Birthday, Sam!
My gawd! 18 years old. A very special number because in gematria, 18 spells chai, which means life. But, as we say in Yiddish, biz hundert un tsvantsig (until 120)! Can hardly wait to celebrate this birthday with you. Thank you so much for inviting me. If I could I would bake you a cake like this! Wishing you the happiest birthday season ever! Love you, Samantha. You are the best! -b
Sam’s a star at Limmud!
Read all about Sam at Limmud last weekend in NYC. She’s a star!
"Samantha Myers is a high schooler in NYC. She has advocated for kids
with FD since she appeared on Nick News to talk about her disease at
age 10. She has been on CNN, spoken publicly for the Make A Wish
Foundation, and spoke at the Girl Power conference for the Lower East
Side Girls’ Club. She has raised over $15,000 for research and care for
those with FD."
Sam is the star of the work-in-progress "Sam’s Club," "an inter-generational video-diary about life, love and FD starring Samantha Myers as her beautiful self, which was presented on Sunday, and programmed by Judith Helfand. "Seventeen-year-old "Sam" was born with a great sense of humor, a bad
case of the Jewish genetic disease Familial Dysautonomia (FD) and
radical notions about using T.V. for social change. She and her mom
will present a range of material from a NICK NEWS Special with Sam as
"Star FD Advocate" to her current passion for making and starring in
original "twins" movies."
She also participated in a panel about who is included and who is not: "From the Bar Mitzvah of a boy with Down Syndrome to a 40+ Chassidic man
who hides his cystic-fibrosis from his community; nose jobs and
“perfect thighs” to “Bubby never mentioned I was half black” to
17-year-old “Sam” born with a bad case of the Jewish genetic disease
FD, a great sense of humor & radical notions about social-change
t.v. Buckle UP!"
That’s not all! Sam was also part of a session entitled "Today I am a Bar/Bat Mitzvah With or Without a Ramp!" "For the last 20 years, rare and creative synaogogues, families and
rabbis have been creating B’nei Mitzvah ceremonies for young adults
with special needs. Every case requires determination and flexibility.
Using original Divrei Torah, one read by a Bat Mitzvah girl herself
(now 17), we will explore the meaning, rewards and ripple effect of
life-change/life-cycle ceremonies."
We are soooo proud of Sam! Congratulations to our very own star.
http://apps.limmudny.org/lny_2007/limmud_pub_schedule/schedule_v1.pl?op=p&id=428
Hannah Montana
Yesterday I met Miley Cyrus and Billy Ray Cyrus. Miley is the actress who plays Miley Stewart in the tv show Hannah Montana. Billy Ray is her real father and he plays her dad on the show. He is a famous country western singer himself, and Miley has an amazing voice. In the show, her identity as Hannah Montana (a young teen singing star) is a secret.
I went with my mother to an interview that was part of the New York Times Art and Leisure Weekend, at the Graduate Center of City University. Miley and her dad were interviewed in a big auditorium, with room for about 300 people. It was mostly kids who went. At first, it didn’t seem we could get tickets but we went anyway in the hope that someone would cancel. We went at 9 am, and they found a way to let me go in my wheelchair and we got to sit in the front of the auditorium. Miley and Billy Ray were right in front of me and they smiled. They were extremely friendly. Billy Ray came up to me afterwards, as they were leaving, and he gave me his autograph. In the interview, they said they have a lot of fun working together. They have four dogs, three cats, some horses and a chicken. She is friends with her co-stars. Miley was only 11 years old when she first tried to get a part on this show, and she had to audition more than once to get it. Then she convinced them to have her dad audition for the part of the dad in the show.
After the interview, we went downstairs and I got to go in the front of the line into the room where Miley and her father were giving autographs.
I will never forget the day!!!!
Samantha Myers 