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Ryan Ballou

My name is Ryan Ballou and I am twenty-four years old. I am currently employed and working towards a college degree in the near future. My family and I are also heavily involved with the Muscular Dystrophy Association and that is because since birth, I have been afflicted with Duchenne Muscular Dystrophy (DMD), a degenerative muscle disorder that affects all muscles within the body. There are over 40 different variations with this type of muscular dystrophy which only affects boys. My family and I have had to cope with this disease and all of its complications my entire life. It is sometimes a challenge, but we always pull together and deal with whatever test is put in front of us from this disorder. However, we feel that it should not stop there. Not only can we deal with the disease, but we can also combat this disease by spreading awareness. As a family, we have volunteered at the MDA Labor Day Telethon for as long as I can remember. Also, I have given numerous speeches to parents of afflicted boys. Through this medium, I hope to spread awareness to these parents and let them know that there is hope. Nevertheless, my family and I believe that we could do something more to aid this cause. My father, Ty, along with our input, started a charity called BallouSkies to help spread more awareness and even raise money for research.

The amazing part of this whole story is that at age twenty-four, my heart is still healthy and functioning as it should. This is crucial because as time passes, all muscles are affected by Muscular Dystrophy, and as we all know, the heart is the most important muscle of all. Also, the risk of heart complications increases with each passing year. Not all boys that are affected by this disease are as fortunate as me to have a healthy heart. Many of these boys, some even younger than me, are facing heart problems or will at some point in their lives due to the disease. My family and I believe that this is a very important issue. If we could somehow slow down or even stop these heart complications, better treatment or maybe even a cure are very possible one day. The main focus of BallouSkies is to raise awareness for this research and gain funds to aid the heart clinic at Ohio State University (OSU). Here, Dr. Stephen Cook and his team of doctors are actually using MRI technology to scan the heart. The doctors take a patient with DMD and scan their heart. These MRI scans show the doctor a patient’s heart from every angle and every aspect of the heart can be scrutinized. At Ohio State’s clinic, they are testing boys of different ages with this technique. The goal of this is to check for scarring and other heart problems and then track these problems with future MRI’s. This would allow boys and their families to know if there is a complication before it may become untreatable. This can help DMD patients and anybody with heart problems. This research can lead to breakthroughs and may even aid in curing this incapacitating disorder along with many others.

This disease offers many challenges and complications, but with this treatment, we may be able to take some of the worry off of the families and the individuals actually suffering from this disorder. With this research, we could find treatments and learn even more from all of the data collected. Imagine longer life spans, and a better quality of life. This research, I feel, would be foolish to pass up. As I said, this research can lead to cutting edge treatments of any heart ailment, not just in those caused by Muscular Dystrophy. If we can help to slow down the deterioration of the heart, this may lead to other muscles and in turn could aid in finding a cure. As I have repeated, the heart is the powerhouse that runs our entire body and allows us to live. Therefore, I believe this is one of the most important avenues of research to follow.

One hundred percent of the money raised by BallouSkies goes to the heart clinic at OSU which allows them to perform the MRI procedure and collect the data. That is why my family and I are trying our hardest to raise awareness. I am almost positive that many who read this will agree with me and find that it would be a shame if this research could not take place. Please help my family and me to help, not only myself, but all boys affected by DMD and all those affected by other forms of Muscular Dystrophy. Every little bit helps and together we can achieve the main goal of healthier hearts and longer life spans. We can battle the disease together and through our efforts, gain insight and create treatments that could help counteract the affects of this debilitating disease.

Ballou Skies | c/o PLB, Inc.

Penn Center West, Building III | Suite 411

Pittsburgh, PA 15276 | (412) 787-8800

 

 
UPDATE: April 7, 2014
Hello all! I hope you all are well and enjoying the warmer weather. The worst is behind us and summer will be here before we know it. The BallouSkies team has been busy planning our summer events and is very excited for this time of year! This update I want to talk about what having MD and helping others thru BallouSkies means to me. The only good thing that has come with all this rain lately is the fact that I have had tons of time to think about things. Introspection is healthy for everyone to assess their own lives. I have spent countless hours thinking about what the hell I am supposed to do with my life. I won’t lie and say I am a very religious person, but with my diagnosis I have found that believing in a greater purpose helps me to deal with the adversities I face on a daily basis. There has to be a reason I have this awful disease. With the creation of BallouSkies my belief in this greater purpose has only been strengthened. I used to lash out at my friends, family, and anything I could possibly think of to blame my predicament on. To pass off my feelings of “why me” and try to run from the truth seemed easier than facing the facts with my head held high. I also used to think that trying to stay healthy had no point because I would eventually succumb to the MD sooner or later. Now that I am a little older I realize that this was one of the stupidest things I could think. This disease is a disadvantage in every sense of the word, but nothing can change that fact. I have been trying my hardest toturn my situation into an advantage. With BallouSkies I have accomplished this task. Our charity is helping to redefine the protocols currently in place that state how this disease and its effect on the body should be treated. Not only does this help me, it helps people everywhere affected by the disease.

I am so happy that I have come to terms with my disability and have found a reason to fight through every day. My fight is no longer just about myself anymore. I need to push forward to continue to help boys with DMD. I need to push forward for my family, friends, and every person’s life that I have affected along my journey through life. I have to stay strong and healthy to prove to myself disability is just a state of mind. Sure things are a lot harder, but what fun is it to sail through life. To sit idly by and not change something in the world is not what I want for myself. The time for feeling sorry for myself is over. If I can get through each day with MD I can sure as hell help make the world a better place for everyone in my life. If I can help to make someone’s day better by simply smiling at them or make someone think about something in a different light than my day has been worthwhile. I know I sound preachy and self righteous, but this is how I will be living my life from now until the day I die. I feel as if my MD has helped me to rise above all of the shallow crap our world holds dear and actually see what things in life I should truly aspire for. Live each day to the fullest and don’t let other’s notions of how you should act or what life can truly be, affect the way you think and carry yourself every day.

I hope that my speeches and writing actually reach through to people and they understand that I do not want pity or others to feel bad for my situation. I sincerely hope you can reach a point in your lives that you are truly at peace with yourselves and do not take one single second for granted. I believe I can do more to reach this point but I am definitely on the right track. No problems we face are insurmountable, and if you judge a person be sure to do it based on how they deal with hardships they encounter in their lifetime. Be well, stay warm, and enjoy the little things in life!

Corks and Pucks: thanks You
Well another successful BallouSkies fundraising event is in the books. Corks and Pucks was our biggest and best event of 2013. The entire BallouSkies team has planned and readied for this event over the past year in anticipation of a great evening. And because of all the help and support we have received it was indeed a wonderful event. I want to thank every person involved in our great cause. Without the support of sponsors and generous donors none of our events would be successful or even worthwhile. I truly am thankful and amazed at the outpouring of support my family and I have witnessed at every single one of our events that we have held over the years. This all accumulated and has led us to what I believe was our best fundraising effort to date. The Corks and Pucks event was such a great evening because of the supporting cast of sponsors and donors. Without generous offerings from businesses, individuals, and even professional sports athletes our events would not be nearly as successful. Without the silent auction and raffle items we could never dream to raise as much money as we have been able to at our events. On the other hand, if the people at the event were not so willing to open their wallets to support our great cause, the fact that we had these items would mean nothing. As an individual with Muscular Dystrophy I can tell you that it is a hard affliction to have. However, it is much easier to cope with this disability by having a great circle of support. Just as people help me get through each day, your continued support and even the support of new individuals has helped BallouSkies to grow stronger with each passing day. It seems that each event has been more successful than the last. Again, this is all because of the amazing individuals such as yourself that we have encountered since BallouSkies humble beginnings with my father running races wearing BallouSkies t-shirts. Now because of the outpouring of support we have been able to help many families that deal with Muscular Dystrophy to have peace of mind. Not only in helping them to receive MRI’s that map the diseases affect on the heart, but also to know that there are people out there fighting for them. If I ever have a bad day or get down on myself, I am immediately lifted back up when I think of the success of Corks and Pucks and of all the events BallouSkies has ever hosted. I am not allowed to have a bad day because I know people care and I know I have a huge circle of support. The same applies to BallouSkies and the events we have held. Of course we always worry that people will show up and donations will be made. Yet, every event seems bigger and better than the last. We simply cannot host a bad event because so many people care and donate their time and money. It is simply amazing how many individuals step up and make all of our efforts worthwhile. Thank you for sharing your evening with us on December 10th , if you attended, and for making BallouSkies believe what we are doing is worthwhile. Everyone who assisted in making this event a huge success not only helped us to raise money, but you have helped us to change lives and spread hope. A hope the Muscular Dystrophy will not cause as much fear, and a hope that those affected with MD have a fighting chance to live longer and have a better quality of life. Without the support of all of you none of this would be possible. I am ecstatic to see where BallouSkies will be in the coming years. I know we will be very successful because we have the support of a lot of amazing people. I hope everyone had a great holiday with their families!

UPDATE: November 20, 2013

Well the cold air is definitely here to stay. I hope everyone is doing well and I suspect all of you are just as excited as I am for Thanksgiving! I cannot wait for the turkey and all of the fixings that go along with it. This has to be my favorite time of year. It is a time to sit back, relax and enjoy some great food with some great people and be thankful for what we have in this world. I am day dreaming as I type this, of my full stomach, a warm fire, and of course football. This year as always, I am thankful for all of the support BallouSkies has had, and continues to have over the years. All of our events have been a success and I know it is because people do care and will donate their time and money to help support our cause. So as always I thank all of you out there that have helped us in achieving our goals. Without you, the charity would not have had as much success. You guys are the true heroes here, and I am forever grateful!

Anyway, now I want to let everybody know about our big year end event coming up in December. The event is called Corks and Pucks and it is to be held December 10th from 6-9 down at Engine House 25 in Lawrenceville. I am very excited about this event. I think of it as our “fancy-event” and when I am there it is amazing because it helps to solidify the feeling that we are making a difference and we are an official charity changing lives. It truly will be an awesome night filled with wine and great food. Engine House 25 is a beautiful venue and also the home of the Roberto Clemente Museum. There will be three floors of food and adult beverages. We will have live music and will be auctioning off a lot of different things; there will be something for everyone’s tastes. Plus 100% of the 50 dollar ticket price and all of the proceeds gained through the auction and raffle go to the charity. Also, Pascal Dupuis will be in attendance to show his support to BallouSkies! Dupuis was at our last bike ride event and has been great helping out our little charity. So tell everyone you know about this event, the information is on the website under the events page, then click on the Corks and Pucks picture and all the information that you need to sign up will be there for you. Please at least consider attending this event, it truly is a good time and it is great that we can raise so much money while having such a kick-ass time. I can’t think of anything I’d rather do on December 10th (wink wink). It is only 50 dollars a ticket and worth every penny. You will drink that much in wine! I hope to see a lot of people there and I have faith it will be another amazingly successful event. I will be sure to post pictures to the site after the event.

Well that’s it from me for now. There is not too much I have heard about the study lately other than I know it is continuing at a good pace and everything is going well. No news is good news they say. Sometime this upcoming year the study will be over and the results will be analyzed. Those results could possibly affect a lot of people in a good way. It will open doors to new treatment for DMD patients and could lead to the treatment being started sooner to prevent muscle loss. So have a great Turkey Day, enjoy the food, and be thankful for your family and what they have done to help you in life! Again, I am thankful for all of you and your continued support.

UPDATE: October 15, 2013
Hey everybody! Pittsburgh has been a happening place recently and many events throughout the city have made the region very exciting as we enter into fall. The Penguins are playing again and for only the second time in my 26 years of life the Pirates are actually in the playoffs after a 21 year drought. I am positive that everyone is well aware of how long it has been! All of their hard work and efforts this past year have led them to their goal of making the playoffs. I was as excited as everyone else in Pittsburgh when that hard work paid off. I like to think of BallouSkies as a team similar to that of a baseball team. Now you may think I am crazy, and that’s okay a lot of people do, but in my head the comparison makes a lot of sense. Allow me to elaborate; a baseball game cannot be won by one man alone. It is a team sport and each player relies on one another for help and support to achieve the goal of winning the game for the greater good of all the teams’ members. Each player on the field contributes their different skills and strengths and without each of those skills the team would be unable to function and not achieve their goals. Sure there are always the superstar players but without a combined effort the whole team would be inefficient. The BallouSkies charity can be described in the same way. We must pull together all of our individual skill sets to meet our fundraising goals. Just as a baseball team we rely on each other to meet our goals and must be as productive as we can be in our efforts to battle Muscular Dystrophy. All the way from Dr. Raman and her research team all the way down to volunteers at BallouSkies events, every single person is needed to push us forward to greatness. All of or hard work has led us to where the charity is now and my family and I cannot be prouder. With our hard work we helped to push this research forward and for others in the medical community to respond so well to our cause. In my last update I told you all about the extra funding BallouSkies will be receiving from the NIH (National Institute of Health) in the amount of nearly 7 hundred thousand dollars. This has assured us that the study can continue and has also proven that others view our fight as something that needs to be continued and pushed forward. Now this does not mean our fight is over, but it is a huge accomplishment. To be directly involved with a medical study that my family and I helped fund is amazing and not a thing most people do in their lifetimes. Now to continue this baseball themed analogy, none of our hard work and persistence would even matter if it weren’t for all of our supporters. It is amazing what someone can accomplish when so many other people believe in what you are doing and support you the whole way. I wish I could personally thank each and every person who donated anything at all. I would thank them for thinking of others and for using their money to help make my dreams a reality. Without your support BallouSkies wouldn’t exist and young boys with Muscular Dystrophy would not have as much hope to conquer this affliction. People’s lives are changing because of our persistence and dedication. These young boys now have more hope and know that this research is being done to help them stay healthy, longer. So thank you all for your support and I know if we all work together, BallouSkies will raise a lot of money and awareness for many years to come. Again thank you all for everything!!!
Ryand and Dupuis  

UPDATE: September 1, 2013

School is back in session and the summer is winding down. Before we know it, fall will be here and the leaves will be falling. To cap a great summer of fund raising BallouSkies held our first annual Under the BallouSkies Bike Ride on August 31st at the Boat House in North Park. Because of the support of a lot of good people the event was a huge success and a great time was had by all. The event was made even more special because of support of Penguins player
Pascal Dupuis. To have the support of such a high caliber athlete was very exciting  Dupuis rode 25 miles wearing a BallouSkies jersey proudly pedaling for our charity! About 100 other people came to show their support and ride along with us. I always worry if we will have a good turn out and I am always amazed when so many other people believe in our cause. Thank you to everyone that help make the event a huge success!

Also, the best news we have heard at BallouSkies came to my father and I a couple weeks ago. The team of doctors and researchers at Ohio State submitted a grant proposal to the National Institute of Health (NIH) to receive more funding for the research that all of your generous donations made possible in the first place. They submitted this some time ago and had been waiting to hear back from the NIH and what they had decided.  About 2 weeks ago Dr. Raman and her team conferenced  with m y dad and I via Skype.  This was when Dr Raman told us the NIH found the study we helped start worthy of additional funding. They will be reacieving over 600,000 dollars in funding to help push this life saving research. This is amazing and it all started with my dad wearing BallouSkies  running gear while racing to small events and now our cause is receiving national recognition and deemed important by the medical community at large. I can’t believe we have come so far! The only way to go is up! Until next time believe  anything is possible and make sure to have one more cookout before fall hits!

UPDATE: July 1, 2013

Summer has finally arrived in Western Pennsylvania! The sun is shining, and the BallouSkies team is ready to face the heat! I believe this time of year is the most important time for BallouSkies to raise funds and spread awareness for the heart research being conducted at OSU. With the nice weather we have more opportunities to hold events. Also, the summer season brings the advent of tri-athlon season, where the BallouSkies team members proudly run these races in BallouSkies colors. Just to think about how many people will be exposed to BallouSkies and our mission excites me to no end. We must work our hardest to take advantage of this time and further the cause as much as possible. With each passing day and each donation, the study at OSU gains more strength and speed, and we are one step closer to beating this disease! “Never give up hope”, is a phrase I believe in more everyday because of your continued support and the support of my family.

The best way I can hope to describe my belief in this phrase is by telling you about our most recent fundraising event. On June 22st we held our third annual BallouSkies walk, and I am happy to say it was a success. Roughly 60 people gathered in North Park and together we raised $3000! Now before every event I tend to get nervous and a little voice in my head is saying, “What if no one comes?”. I understand people are busy and have various commitments, and I find myself wondering will people find this event important enough to fit their fast paced lives and time crunched schedules. So I countdown the days to the event hoping that it will be amazing and that our mission is a success. I never give up this hope, and every event I am blown away about the amount of support I have behind me and the BallouSkies mission. This past event was no exception! Again I was worried for no reason, I won’t give up hope of continued support and I won’t give up hope that I can beat this disease.

So thank you for keeping my hope alive. On bad days I simply think about every single donation and every single person to attend an event and I feel better about everything. This feeling is better than any medicine I could ever take and I am grateful for the motivation this provides. Just know that you are not only doing all these things for me, but through your actions all afflicted with DMD benefit greatly. Not only will we benefit physically but mentally as well. You are all amazing and I couldn’t get through this without you! Now get out there and help the cause! Don’t forget the sunscreen!

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