Thanksgiving and My Bar Mitzvah

My Bar Mitzvah was on Sunday and I had an amazing time. Kevin was so happy to be there with me, and most of the time, he was dancing and showing off his moves. I was thankful for him to be there with me and the Kearney family because of what they have done for me. I was so happy that Kevin enjoyed my party because I want the best for him.

In my favor bags, I gave out the bracelets my project. The next day in school, my friend walked up to me and said," I wonder where I got this. It's a nice thing your doing Thomas". I was so thankful and laughed at the first thing she said.

Everyone is thankful for something, right? Well, I'm thankful for everyone in my life and who makes me smile or laugh. I want everyone to have a Happy Thanksgiving!

The Collage I gave to the Kearney's to show how people who supported Duchenne.

My Day with my Cousins

Me on the Ropes

Me and My Cousins

This past weekend, I went to the Palisades Mall to meet with my cousins. We went on the Ropes and had a great time. Then we went to Buffalo Wild Wings for lunch. When we were done, my cousins bought bracelets. Jack,15, and Riley,10, each used their own money and made donations. Their mom Allison did also. They were being very generous. I was very grateful and happy at the same time.


My cousins lived in Japan for three years, including during the time of the earthquake. With so much devastation, they wanted to do something to help, so they made bracelets that said "Hope for Japan" and sold them. This relates to my project because we each used bracelets to raise awareness for a cause.






Japan Bracelet

The Generosity of Strangers

Earlier in the week, Kevin's mom posted my blog on her Facebook page and her friend Helene commented that she'd like to buy bracelets. My mom private messaged her asking her how many bracelets she wanted. Helene said she wanted 20 and my mom mailed them to her.

When Helene got the bracelets, she posted a picture of the bracelets and asked her friends if anyone wanted.Many said yes! Helene called my mom and asked to buy 50 more bracelets! That got me excited. And then, Helene called my mom again and told her that the booster club at the local high school wanted to sell bracelets at the football game and asked for 100 more.

If you are keeping count, that is 170 bracelets! I just got 300 in the mail. I think we are going to have to order more.What is amazing to me is that so many bracelets are being sold and the awareness is being spread so quickly. I want to thank Helene and the booster club for their generosity. Bracelets anyone?

The picture Helene posted

New Order

My mom reposted my blog onto her Facebook page. I was surprised because a ton of people asked to buy bracelets. I had to do some hard work writing notes and packing more bracelets. I started to run out of bracelets so I asked my mom to order more and we ordered 300! The reason was that I decided to continue my project after my Bar Mitzvah. I am very happy that I am doing this.

If you want to buy a bracelet or two or three..., please contact me at projectendduchenne@gmail.com. Please tell people about my project. We have plenty of     
                                                                                    bracelets so everyone can buy!

My Goal Before My Bar Mitzvah

I can't believe that my Bar Mitzvah is only 7 weeks away! I am in the final stretch. I have a big goal to finish out the Bar Mitzvah part of the project. I have sold 150 bracelets and my goal is to sell 200 in total or more before my Bar Mitzvah on November 23. It's a big goal but I think I can do it.

Also, I don't really want my project to stop after my Bar Mitzvah. I think that everybody has something that they want to fight or raise awareness for. For me, that's Duchenne. I want to help the Kearney's in any way possible.

Keep spreading the word about Duchenne and if anyone wants to buy a bracelet tell them to contact me at projectendduchenne@gmail.com. Bracelets are $2 if anyone asks.

Coach for Cure MD

Today was Coach for Cure Day in college football. Kevin was asked to go to the Marist College- San Diego game. Before the game, Kevin said to his mom, "I'm so excited to go to the football game. At the game, he got an autographed ball and a jersey. Kevin was honored because he was helping bring awareness to Duchenne through the popularity of college football.

At every televised game in the country, coaches are wearing Coach to Cure MD armbands to support the MD fight.

 

If you would like to contribute to the Coach for Cure foundation, click the link below.

 

http://www.parentprojectmd.org/site/PageServer?pagename=Fundraise_coach2cure

World Duchenne Awareness Day

Today is the first World Duchenne Awareness day. Pope Francis said "September 7, 2014 will be celebrated for the first time, all around the world, the international Duchenne Awareness Day." This is a very joyous day for all Duchenne families because the world can now recognize and see how destructive this disease can be. I hope now that because the Pope has made this declaration, it will bring that much more awareness to the situation and as a result, generate more money in terms of donations for research. That give doctors and scientists more resources at their disposal and hopefully bring them one step closer to a cure.

Also, in response to the Pope's declaration, Parent Project began sharing virtual balloons today. When you visit the Parent Project page, be sure to share it on your own personal social media pages, whether it's Facebook, Twitter, Instagram, etc.

I wonder how many people sent out balloons today? I hope there were many. The virtual balloon project is like my Bar Mitzvah project in that is raising awareness for Duchenne. Let me know if you shared a balloon. I know I'm going to be sharing one.

Yard Sale

At my mom's yard sale last week, I sold bracelets to 17 bracelets. I made $35 in two days. I was very happy because I opened my mouth. I'm normally shy about my project but when I shared about what I was doing, they listen and contributed. Everyone of them said that what I was doing was for a good cause and that they will pray for the Kearney family. Thank you everyone for buying! I'm hoping to sell 100 more bracelets before my Bar Mitzvah.

Adwar Family

Brenda and Cocoa

Me selling Bracelets

Packing bracelets with Braden

Sepede Family

Terri and her friend

Melody and her Husband

Sometimes We Take Our Personal Physical Mobility For Granted

I am a very active person. I am a runner, a tap dancer, and a baseball player. Also, almost everyday, I shoot hoops for fun and play hockey and soccer in my driveway. As I have been working on my project to raise awareness for Duchenne, it occurred to me that Kevin and DMD kids can't do what I do. I saw a video of a muscular dystrophy convention and everyone was dancing. I take for granted that I can move my legs and dance and run. I feel sad about Kevin's condition but after I saw all the Duchenne kids smile, I still felt sad but remembered what he can do things that make him happy.

I often ask my parents to do things that I am too lazy to do myself. They will tell me I am capable of doing it and that I should do it: like getting seconds of dinner from the kitchen. This often makes me mad that they won't do it for me... then I think about Kevin and other kids in wheelchairs who don't have the same mobile freedom that I have. Next time, I am going to think twice before I ask my parents to do something I can do myself and be glad that I can, not mad that they won't do it for me.


This is the video of the Duchenne kids dancing. Look how much fun they are having. Please click the link to view. If I can upload the video without the link I will edit the post and put it up.

                                    https://www.youtube.com/watch?v=srm2vACjN0c



                              This is a video of me dancing. I am proud and grateful of what I can do.

My Duchenne Instagram Account as of July 22,2014

Recently, my Instagram account for my project wasn't getting followers. I was upset about that because I want people to know about it. I should have told more of my friends though. Now I realize that I have to tell more of them to sell the bracelets and get followers on my account. Last week, I came home from camp and I checked my iPod. When I checked, a notification said I have 5 new followers. That's not all. Within the next couple of days, I also received 4 more followers. This excited me because out of no where I got so many followers. If you have an Instragram account and are already following me, help spread the word and let people know about my project. If they want to contact me, have them email me a projectendduchenne@gmail.com. I am still selling bracelets and still have a lot of pending sales. Please help spread the word about Duchenne.

Kevin

After I got the new set of bracelets, I gave some more to the Kearney family. Kevin was bringing the bracelets into his school to sell them for my project. When I found out that the Kearney's needed more bracelets I thought that only the teachers in his school were buying because that is what was happening when I promoted my project at my elementary. The Kearney's just kept asking for bracelets. Then Kevin's mom, told me that all of Kevin's friends were asking for bracelets. I was very happy about this because this is exactly what I wanted to happen.

Sadly, Mrs. Kearney told me that he broke his leg. I don't know what is going to happen to him. Kevin's mom said he is getting better.

POSSIBLE SNEAK PREVIEW OF WHATS TO COME!:

Kevin's mom is think about asking her other son's athletic director to do a Coach For Kids day. I didn't hear much about it except that she might ask. If the athletic director says yes, then we will promote my project there. That would be in September.

The New Bracelets

After finally running out of the first set of bracelets that I got to sell, I decided to change the way the bracelets looked. Instead of keeping the font white, I changed it to green. I really liked the change of the color because it made the bracelets look more classy. Also, the color to support Duchenne is green. This is why I chose the bracelets to be green and the font now corresponds to my project. I also started packing the new bracelets too. Continue to support the fight to help end Duchenne.

"Darius Goes West"- a Duchenne Documentary

To learn more about Duchenne, I watched a documentary called Darius Goes West. Darius Weems is a 15 year old boy who lives in Athens, Georgia.  Darius is a rap artist, loves video games, food and the Atlanta Braves. His brother, Mario Weems, had DMD and died at the age of 19. He and his friends take a cross country trip for him in 2005 to raise awareness for Duchenne. On this trip, another goal is to get his wheelchair pimped by MTV. While on the trip, at all the stops, he looks to see if the places are handicap accessible. His friends direct the film. He was 15 at the time. His friends met him at the summer camp that Darius goes to. The documentary won over 20 awards. Now, Darius is 24 years old and teaches children and adults about Duchenne Muscular Dystrophy.

 
 
 
 
 
 
 
 
 

Bracelets Sales as of 4/15/14

As of 4/15/14, I have made $308. This is very exciting. I feel that this project can turn more into an achievement for me and for the Kearney family instead of a project. I have recently gotten an Instagram for my project. I convinced my parents to let me use it. I feel that more people can see pictures through social media. If you buy a bracelet and have Instagram, I will tag you in a picture with the bracelet. You can also take a picture with the bracelet and then send it to me. (If you live close enough.) If you are not close, I will just take a pic of the bracelet and tag you in it. Keep talking and spreading the word about Duchenne.

Bracelets and Thank You Notes are In

The bracelets and thank you notes are in! They are bagged and are going to be sold. They are $2 for a bracelet and a thank you note. The Kearney family helped me bag the bracelets and thank you notes to raise awareness for Duchenne.

Bagging with the Kearney's

Bracelets Sold

When I started my Bar Mitzvah Project, I didn't know what to expect. I knew that I would sell some bracelets but not as many as I have sold since December 27. I have sold 27 bracelets in 2 months. I also have a bunch of pending sales. I need to make time sell the bracelets for the pending sales. I hope that I sell these bracelets soon. If you want any bracelets contact me at projectendduchenne@gmail.com. The bracelets are 2 dollars and they come with an info card about Duchenne.  Most of the places I have sold my bracelets are at Hebrew School, dance (IMPAA), and to my teachers.

Contact Information

Now that I have an email  for my project, you can contact me if you would like to find something out or by a bracelet. The email is projectendduchenne@gmail.com.

Winter Break Goal 2/13/14-2/23/14 Achieved

Yesterday, my mom posted on Facebook about my Bar Mitzvah Project. Within minutes, people wanted to buy bracelets one by one by one. The money that is getting collected from this goal is $32. It is amazing. The awareness for Duchenne has gone up. Or maybe it is just because it is a Bar Mitzvah project, I don't know but it makes me feel good inside that I am helping Kevin.

Bracelets and Thank You Notes

The thank you notes and bracelets look like this.

The bracelet preview is underneath.

 

 

The thank you note preview is below.

Winter Break Goal: 2/15/14-2/23/14

Over my winter break , my goal is to sell at least 5 bracelets or spread the word about Duchenne to 10 people. I also recommend you spreading the word about Duchenne too! Help raise awareness about Duchenne Muscular Dystrophy.

Super Bowl Sellday

On Super Bowl Sunday I sold 7 bracelets for $14. At the party I went to, there was a former Giants player. His name is Karl Nelson.  I have now overcome my fear to ask people to buy bracelets. Over all so far I have sold 21 bracelets for $44. More donations means more help. Lets find a cure to END DUCHENNE!

                                                   Karl Nelson and Me in 2012 when I met him.

What is Duchenne Muscular Dystrophy?

Duchenne Muscular Dystrophy is a muscular dystrophy that affects 1 boy out of 3,500 boys born. It doesn't affect girls at all.  Duchenne shows it sign at about ages 1-3 when the boy has trouble walking. Later in life, around ages 10-14, the boy usually can't walk. By their later teens, they don't really have the upper body strength that they had when they were 5 or 6. This doesn't allow the boy to move his arms anymore. When the respiratory system weakens, they need constant support. This and ultimately hurts their heart and lungs, two organs vital for life. Unfortunately, there is no cure for Duchenne yet. However, there are medicines that can slow down the process of the muscles weakening.

Brainpop about DMD. Tim and Moby

talk about how Duchenne affects the boys

body in kid friendly terms.

The link below can give you more information about what happens in the body of a child with Duchenne.

http://www.parentprojectmd.org/site/PageServer?pagename=Care_stage