Today, my friend Keshi and I spent the afternoon at the studio of the wonderful artist, Max Gimblett.

The space is so beautiful and calm, and we loved drawing and painting, and Max is so encouraging.

Here are some photos of us there

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Yesterday was my last visit to Dr. Sussman who has been my doctor my whole life.  He makes me laugh with all his silly jokes. He's so nice to all his patients and treats them really kindly.  His wife Jerry is also so thoughtful and works as his secretary.  One time when I was really little he came over to my apartment in the middle of the night to find out what I had which was so incredibly nice of him to do.  When I have been in the hospital he always came to visit me.  He's retiring this year and I'm 21 years old now, so this was my last visit to him.  I got him some roses and wrote him a card thanking him for being such a great doctor and I wished him a good retirement to him and Jerry.  If you guys are reading this I'm really going to miss you!!


  

 

Today I watched Romy and
Michelle’s High School Reunion. With Lisa Kudrow and Mira Sorvino they were both
very good in it.  The plot of the
movie of course was their 10-year high school reunion the only problem is that
they don’t have any jobs or boyfriends, so they pretend to be extremely
successful and have boyfriends.  I
recommend this movie to teenagers and young adults because there are a few
curse words that are not appropriate for young children.  The reason I liked this movie is
because it’s about two best friends who live together and when they go back to
the reunion they see all there old classmates from 10 years ago and get even
with them for making fun of them back then.  When first arrive at the reunion they are wearing matching
suits, but then they change into these really funky dresses that Michelle made
for them one of them is pink and the other one is blue.  Than 6 months later they open their own
little boutique, which becomes very successful.  Anyway these are the reasons why I like why I like this
movie.

This Summer I’ve decided to watch all different kinds of movies and than post them up on my blog, so everyone can read about the movies I’ve seen and post little comments about them.

The movie American Mall is about teenagers who love to sing and dance. There’s also romance between the two main characters Ally and Joey, except there is a snobby girl named Madison who steals Joey away from Ally. Since she is such a snob she is trying to put the music store out of business where Ally and her mom work so she can have her own boutique store. Ally got accepted into a music school, in New England but her mom thinks she’s not talented enough to be a really good singer but earlier on when Ally and Joey meet for the first time on the roof of the mall Ally writes Joey’s name on one of her songs which means that she really likes him. But when Madison hears them singing she steals the song that Ally gave to Joey when they first sang together, then she sees Joey and Madison together and she becomes really jealous . Then Ally’s mom has to close down the music store because they didn’t have enough money to keep the store in business. When Ally’s mom sees that she got accepted into the music school in New England she was not happy for Ally. Then they get into this huge argument, because Ally’s mom used to be a professional singer and she doesn’t want her daughter to get her hopes up. Her mom wants her to go to college for business and that’s why they had that big argument, but at the end she sings on stage with Joey and everyone including Madison. Ally dedicates the song to her mom and when she hears how good Ally is she changes her mind about how talented she is. I really liked this movie, because I thought that the music and the plot were really interesting and they had the same producers from High School Musical. The plot was pretty similar to the second High School Musical, because Ally and Joey become a couple just like Troy and Gabriella and the snobby rich girl tries to steal the boyfriend away from his girlfriend but of course at the end of the movie they end up back together and the snobby girl sings with the entire cast. I would recommend this movie to any high school musical fan.

A few weeks ago Lily and I went to my friend's David party at his old
high school. We had such a great time. There was live rock music,
dancing, pizza, soda, and necklaces that light up in different colors.
Here are some pictures from the party.

2 weeks ago it was my turn to plan the leisure trip for my class, and I chose to go to the The Big Bambu exhibit at the Met.  Amelia Peck who works as a curator there gave us a private tour of The American Wing.  It was really amazing, because we got to see all kinds of different bedrooms and dining rooms, which I thought was really amazing and cool.  Big Bambu was on the roof, and everyone really loved it.  I chose to bring everyone there, because it is my favorite museum, and I saw a really cool picture of the Big Bambu exhibit in the paper and I thought it would be a great exhibit to see.  My teachers and friends thought it was really incredible and amazing because they had never seen anything like it before. and neither have I.   The wishing fountain in The American Wing was a lot of fun, because I threw 2 coins in and made a wish.   
 
 
  

 

 
 
 
 
 

 
 
 
   

    

On Saturday, my cousin Lily Szajnberg (she's the one on the left) came by with the women's a cappella group Treble that she is part of, and they sang three fantastic songs right in our apartment. They had just tried out for the reality TV show Sing Off.  Today they made the finals!!  How cool is that?

http://www.treblenyc.com/

Download I Want You Back*^

Last month I participated in a research study on FD with Dr. Vaughan Macefield who was visiting NYC from Australia.  In the pictures, he is checking how my nerves respond when he inserts a needle in them.

Here is his website if you want to read more about his work.
http://www.uws.edu.au/medicine/som/key_people/professor_vaughan_macefield

I'm on the table, my dad is in the pink shirt, Dr. Macefield is in white pants.

 

  

Samantha Myers, Distinguished Alum

 and FD Advocate

Graduate of Mary McDowell Learning Center is 

featured in an article about the transition from 

high school to the "real" world
 

 http://www.familialdysautonomia.org/news/NYU-Skills.htm

What happens to young people with disabilities after they leave the structured and supportive environment of high school? As many families with FD have found out, there are precious few mandated resources for assisting with the transition from school, and there are very few programs for helping individuals find productive employment and internship opportunities. 

 

Samantha Myers is featured in an article that describes her experience with a program that seeks to address this all too familiar problem with a new approach. Her mother, Faye Ginsburg, spearheaded an effort to establish improved transition services for Samantha and others like her.  Samantha has benefited from an innovative program, Skills @ NYU, recently developed by her mother with the Cooke Center Academy and Winston Preparatory School, on the NYU campus.  As the article states:

 

The program provides a combination of academic courses, along with internships that enable the students to explore various career paths … For now, the goal is to provide a supportive environment for the high school grads while they figure out what’s realistic for them. That’s where the internships come into play – a pathway into the “real world” when the transition is completed. Job coaches work with the students to match their talents with appropriate assignments that will lead to a positive experience that will bolster their confidence.