Night of Wonder 2014

http://www.progeriaresearch.org/2014-night-of-wonder/

Want to help fundraise?! Held once every two years, this year is the year of the Progeria Gala!!! This year it will be Saturday April 12th! The red carpet will be rolled out at the Royal Sonesta Boston in Cambridge, Massachutes. Attire Hollywood chic and dress to impress! It will last from 6:30 to midnight. Ticket are for sale on the Progeria Research Foundation website!

The life of Sam Bern

http://youtu.be/W12m28awk48

This video is a documentary about a kid with progeria, Sam Berns. Sam passed away last month but he has made a big impact on people. He also did a TedxTalk. Even though he had an illness he never let that get him down. When he wanted to be in band but couldn't hold up the snare drum he found a way to change that. He never let progeria stop him. 

What can you do to help?

Though there is a research foundation, fund for it is limited. To help aid in research you coul hold a fundraiser! You could help fund the research to cute them! Some ideas you could do is hold a 5k run or a carnival. Or even a bake sale. Anything to get involved could help:)

Why it matters?

Though Progeria is very rare it is a devestating disease. The children with this disease usually don't live past 13 years old. This is very upsetting to the families and communities. Also this disease can affect anyone. There is concerning because researches don't know why this occurs. It could someday affect you and your family or community. That is why you should care. 

Living with almost a cure

http://www.medicalnewstoday.com/articles/250725.php

The first cure that showed improvement was in 2012.  The case study included 28 children from 16 different countries.  The children traveled to Boston to undergo extensive medical treatment.  The improvement was shown in their weight gain, their bone density increase, and the heart vessel wall increased in density as well.  However right now the drug will not be administered to all kids with Progeria.  The Progeria Research Foundation and the National Institute of Health are currently running another trial to ensure the use of this drug. 

Sam Berns

http://www.progeriaresearch.org/sam-berns-102396-011014.html

Sam Bern recently passed away to due Progeria.  Sam was a 17 year old student, while most kids with this disease don't live past 13.  He played in his school's marching band and also sometimes gave speeches. In 1999 his parents started the Progeria foundation after seeing that there was no research continuing.  Sam passed away on January 10th, 2014.  He was been an inspiration to those he surround and will be missed.

Interview

To understand how Progeria can affect the people it surrounds we talked to Morgan Sample.  Morgan is a high school student that lives in Anthony Wayne, the school district that Kaylee Halko, a girl with progeria lives in as well.  We asked Morgan a series of questions about how it has affected the community and these were her responses. 

Interviewer:When Kaylee was first diagnosed was there a change in the community?

Morgan: Yeah when she was dianosed the community came together and started to raise money towards reseach for her.4

Interviewer: Do they still raise money or has it kind of died off since then?

Morgan:  Oh no! We still raise money big time.  The softball team raises money for her and she has a 5k every summer.

Interviewer: When the second girl near Toledo was diagnosed do you think it raised awareness more in the surrounding area?

Morgan:  I am not really sure, but if anything I think people realized that it can happen to anyone

Interviewer: Have you ever met Kaylee?

Morgan: Yeah and she is one sassy little girl.  I was playing for the softball team and we did a game for her and she did the first pitch and some batting.  It was really cool, but she knows how to take advantage of it..  She still is precious though.

Interviewer:  So you think she handles it pretty well?

Morgan:  Absolutely!  Her family is really supportive and she enjoys life.  She does dance and like a week ago she went to a father daughter dance.  I think she is trying to be as normal as possible.