Personal Initiative Update

Pryia and I’s Walk- A- Thon will officially be Saturday May, 18th from 10-12. We have ordered shirts that will say “STEPS for the SICK” and have footprints going across it. Andrea Cole and Rachel B. will be preforming live. There will be a bake sale, fun activities, face painting, and a slide show that will talk about our senior project diseases. I hope to see some people there, spread the word!

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Another Update of my Personal Initiative

Recently I have added another event to my personal initiative. Tomorrow, as of May 1st, I will begin putting the boxes out for the order of the bracelets and the pamphlets, but because of their high expense I felt that I need more than just attempting to sell and talking in homerooms. So as of right now Priya Patel and I have been approved and in the process of creating a Walk -A-Thon called “Steps for the Sick”. The idea of this walk is on Friday, May 17th families all around the community will meet at the High School track and we will have bake sales, a few of our peers playing live music, T-shirts for sale that Bob the hall monitor is helping us make, some fun kids games set up all over the middle of the track, pamphlets to explain the walk and our projects(with order forms for the bracelets in it), donation boxes everywhere, and lastly little strings for each walker that can put a bead on every time they do a lap. This event is a little like Relay for Life but more kid orientated considering the walk is for kids with illnesses. Out motto is “we walk for those who can’t”. We are also attempting to get more of the community involved by asking the Jack Pact club to have a table set up. To help spread awareness about our project other than the pamphlets we have also made a slide show that will be shown that explains some facts and pictures of Priya and I’s projects. We are making ribbons and have already made flyers to spread around the school system and community. As we hope to raise some money for Cystinosis Research Company and Cancer Aid, our main focus is to make a fun event that will help spread the awareness.

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Update on Progress

My pamphlet has been approved, as well as fundraising including donations and selling awareness bracelets. At each class table this week there will be a shoe box decorated and have a slit in the middle for people to put donations as well as order forms for bracelets which are in the pamphlets. Elisabeth Bowerman was nice enough to make a poster for me so those will be up this week as well. The poster just informs each class that I am selling bracelets. The pamphlets include order forms, a description of the disease, what the money goes to, pictures of bracelets and children with it, and a thank you. Lastly I have been given the okay to talk to each class in their next up coming homeroom meeting, I am just not sure when yet, but I will better explain what my project is and inform them of what they can do to buy them.

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I talked earlier about how I wanted to make a pamphlet to go along with selling the awareness bracelets to raise money for families that have children with this Cystinosis. I have been gathering information that would be best to put in the pamphlets. I have focused mainly on what the basic and easiest to understand explanation of the disease is, wanted to touch on how rare it is, and most importantly explain where the money would be going and why the families need it. I have also decided to talk to the activities lady about going around the lunch rooms and possible jumping into the end of a homeroom meeting, thank you Shannon for the idea, to help educate people a little better and persuade them to buy one. I have also talked to one of my friends in graphics about helping me make posters that could go around the school, once approved by the right people.

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Big Idea

For my personal initiative I plan to sell bracelets and with them pamphlets to help raise money and spread awareness of Cystinosis. The money that is raised through this effort goes straight to families who suffer with this disease, as well as the research to help find a cure. This will directly help solve my problem by tackling both the awareness and the effort to help the families in need.

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Personal Initiative

For my personal initiative my goal is to spread the awareness of Cystinosis and raise money for the families fighting against the disease. My idea is to sell hand made Cystinosis bracelets. This way the money that the people spend on the bracelets will support the families, and wearing the bracelet will cause people to question what it stands for, spreading the awareness of this rare disease. I have already purchases a bracelet along with many of my family members and family friends. For a better idea of what the bracelets look like, here is the website that talks a little bit more about them.

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New Project: Cystinosis

My project will focus on a rare genetic disease called Cystinosis. The disease is an orphan disease that approximately five hundred people in the United States, and two thousand worldwide, are diagnosed with. My plan is to raise money for a Cystinosis Research Foundation to help find a cure for the sick children.

Cystinosis is an autosomal recessive genetic disease, meaning both parents are carriers of the gene. The odds for couple who are both carriers are about one in four, meaning that they are able to have children who are not affected by the disease. The gene for Cystinosis has recently been mapped for chromosome 17p13.

Cystinosis is a metabolic disease where the amino acid cystine gets into cells, but is unable to get out. Because of the problem with transportation the cells crystallize which cause them to die early. The effect of this is that organs slowly begin to die. The major areas of the body that are effect are the kidneys, liver, muscles, white blood cells, eyes and central nervous system.

Cystinosis is such a rare disease, and only affects a small portion of the population; research money is rarely ever given. Although with the amount that families have been able to raise, they have been able to locate the gene, and even lead to other advancements in other rare diseases.

This project is personal to me because I have a cousin with this disease that I have watched struggle, and his parents fight for him to stay alive. My cousin who was told would die before the age of five spent ten years eating from a feeding tube, gone through two kidneys transplants, and spent a good portion of his childhood in the hospital. He is now twenty-two, graduated from college and living a normal life. This wouldn’t have happened if it was not for the people who donated their money and research for the organization. The problem is there are still hundreds of kids out there who are sick, like my cousin was, and need help.

My plan is to tackle both the awareness and the fundraising at the same time by selling Cystinosis bracelets to my community. This way people will be giving money, but also be given something back, and when people comment on the bracelets they can tell them what they are for, this will help raise awareness for the rare disease that is sadly killing children around the world today.

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