Ryan's Story

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.

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UPDATE: January 2013

I know I am a little late but Happy New Year everybody! I hope every one had an awesome holiday with their families and friends. Ill tell you what I did, I spent new years in Miami this year! My dad, little brother, and I had the awesome opportunity to see my dad’s college alma mater Northern Illinois University play in the Orange Bowl on New Year’s day! It was a once in a lifetime trip and a great way to start a new year! I trust all of you had an equally amazing time where ever you were on December 31^st!

Now that a new year is before us the opportunities for change and progress are laid before our feet. I am very excited that BallouSkies is still going strong and continues to have the ability to help raise money and awareness for invaluable research taking place at Ohio State University. Within the next couple of weeks the BallouSkies board members will meet and lay out the plans to raise even more funds in 2013. As a board member I am very excited for this meeting and hope we can come up with great new ideas for our annual events and hopefully some new events as well. As always we are open to any ideas and could always use extra help even if it is just manual labor! Do no hesitate to give us feedback!

So with this new year I am taking the opportunity to really take care of myself. To eat right and really make sure I am getting all the nutrition my body deserves. If everybody is going to support me and my quest to stay healthy as long as possible, I should support myself and really take to heart what the charity is truly all about. This is my new outlook on life and I am feeling more at ease than ever before. I really had to take a step back and analyze my life and past decisions. I believe I changed my entire mindset and have never felt better about facing life with DMD. I hope everyone else can have a moment like this in their lifetime. Instead of every year making some superficial resolution like no pop or less sweets everybody should really look inside themselves and analyze their decisions and truly make a change. This year I realized that my goal in life is to keep BallouSkies successful for as long as possible, As long as I am here on this Earth my mission will be to spread the knowledge that DMD is out there and is terrible but I will also spread the message of hope. There is hope, it is not all dark and dreary and with this charity and all it has accomplished creates a shining beacon of hope to cut through the darkness. I realized that I must never let this beacon be extinguished and am glad of all the help and support I have received in order to continue this charity that had changed my life.

My point in all this babbling is that if you find something in your life that you couldn’t imagine yourself not doing, embrace that thing. It can lift you up and make your life seem worth living. I often think to myself why did I get this terrible disease? And I find that I cannot express in words how much BallouSkies means to my family and I. The charity helps me deal with this disease and I will stop at nothing to ensure other people afflicted with this disease can feel the same. If anyone knows someone battling this disease tell them about BallouSkies and reassure them that there is hope all round and people are helping to fight their battle. Those affected by DMD , including myself, are not alone and have a whole army of researchers fighing the battle on the front lines. So this year help us to spread this hope. The researchers need our help so that the battle to cure MD can be won. We ask that if you find this cause worthy to help us in our journey! Donate, volunteer, or even just tell others about BallouSkies! I hope everyone is healthy and ready for another year of crazyness on this planet!

UPDATE: Decmeber 2012

Hello everyone! I hope you are all enjoying the mild December we are having. Although it may not feel like it, the Christmas season is upon us once more. Time for throwing all dietary restrictions out the window, and being with the ones we care about the most! Good times and many parties to be had. We recently had a party down at Engine House 25 in Lawrenceville when we held our second annual BallouSkies Champions Gala. I would like to thank everyone who came out for a good time and made the event a success for the second year in a row. It was BallouSkies’ last hurrah for the year and our last major event. We are shy of our yearly goal, but every penny we earn for the charity is a step in the right direction and is a success. The generosity and giving I have seen in my lifetime is amazing and I am glad I have so many supporters behind me every step of the way. This year for Christmas I am asking anyone who may be contemplating giving me a present to instead donate what they may have spent to BallouSkies and help my family and I give another family the best present of all this year, the news that their child’s heart is healthy. This powerful gift is amazing. It is truly the best gift any person could receive. It is remarkable that an intangible thing such as peace of mind is a better gift than any material possession one could ever obtain. I have received so much help from others in my lifetime, and now that I can help others battling the same thing I now know the satisfaction of helping people. The charity has changed people’s lives, just as it has changed my family’s lives for the better. I believe this is the true definition of the Christmas spirit. Helping others less fortunate and in need and caring for and being with our loved ones is one of the most sacred characteristics of the human condition. So this year I am asking every one to really think about what they have and who they are thankful for. Think about what life would be like without what you hold most dear to your heart. I am thankful for everyone who has made BallouSkies a success. Without my family and friends none of this would have ever become a reality, and many lives would not have been changed. So when you are with your family and friends this year be thankful for every single second you have with them, because without them you may never be able to unlock your full potential. I am so grateful the charity is a success and that my family as well as many others now have peace of mind and know that things are being done on the battlefield against Muscular Dystrophy. So if you are in the giving spirit and want to truly change people’s lives please donate to BallouSkies and give families the best present of all this year. The knowledge that they will have many more Christmases together because of your small donation. Happy holidays all, stay safe, and most of all: eat, drink and be merry.

UPDATE: July 18, 2012

Summer has officially here and boy is it wearing us all down! The temperatures are on the complete opposite end of the spectrum from the frigid winter we had to endure. As the seasons are changing and the weather is heating up (almost to where an egg can be fried on the blacktop) so is BallouSkies and our journey through another year of battling MD. The tri team has been busy competing in numerous events and doing awesome as always! Continuing to spread the BallouSkies message of hope these top of the line athletes are a huge part of our success and sometimes they don’t get the recognition they deserve! Also we are in the following months be moving towards some charity events to be held in the fall. Just as the skies burst forth with rain during a thunderstorm the BallouSkies effort is gearing up and getting reading to burst forth with funds for research and the knowledge that this research exists and can change lives.

As I stated in my last update there wont be any real news from the study being conducted at OSU (which you can read about in my past updates). Dr. Raman and her research team will be collecting data over the next year or so and hopefully once all the data is in, strides can be made in the care of MD patients. I am very excited for this study to be complete and everyone’s hard work to pay off! I know this may be just one small step in defeating MD but as I have always said, I am willing to try anything or do anything to not let the MD win. It is a tough battle but we are all in this together and I have the support of incredible athletes, super smart doctors, and of course my family and friends. I feel like I can accomplish anything with this strong group of people at my back.

I will be sure to inform everyone of any new developments in the study and share any concrete details about any BallouSkies events coming up. We still receive donations all the time and I am grateful to everyone who donated to BallouSkies or talked about BallouSkies to any of their family and friends. And if you really want to support the charity you can wear a BallouSkies wristband. I have made several friends wear one and swear to never remove it! Please continue to help BallouSkies, share our story and help us to assist more people in the battle against MD. Check back often and let me know if any one out there would like to get involved! Try to stay cool out there!

UPDATE: April 11, 2012

BRR! Winter seems to be holding on for dear life. The weather has been gloomy lately. In the coming months though spring will be here and summer will follow. Just as the weather is changing and warming up the BallouSkies team is gearing up for another year of fund raising. As most of you know last year we managed to raise 60,000 that went directly to the heart clinic and assisted Dr. Raman and her research. On the research side of things, Dr. Raman and her team are preparing for the commencement of their study. This research study will monitor the effects of Spironolact, a heart medicine, on redcuing scar tissue that can accumulate on the heart muscle. This study can open many doors and lead to changes in the treatment protocols that are currently in place. Dr. Raman and BallouSkies are very excited for this study and cannot wait to analyze the drugs effectiveness in keeping the heart muscle healthy for as long as possible. Of course I will be updating all of you out there on the progress of the study. Unfortunately we will not have any results for atleast a year. However, we are making huge strides in the right direction!

Not to sound like a broken record but again I want to thank every single person that has volunteered, donated, or assisted BallouSkies in any way! Without the great amount of support we have received, this study would not have been possible in such a short amount of time. The success of BallouSkies makes me happy. To know that so many people are out there supporting us and pulling for us to succeed is a huge motivation boost. It has made BallouSkies grow steadily and raise more money than my family and I could have ever imagined. And all of this is possible because people care and want to help individuals that are affected by this terrible disease. The burden of my disability seems to be lifted away when I have the support of so many people. I am so happy that I can contribute to the battle with Muscular Dystrophy and not only help myself but help everyone that suffers from the disease!

This time of year is very exciting and I cannot wait to raise even more money in 2012. Nothing can hold us back and I hope BallouSkies continues to grow and gain more and more followers. Just as I cannot face the challenges of the day without assistance from others, I cannot face the challenges presented to me through the charity without all of the help I have received from others. Thank all of you again and hang in there a couple more weeks for shorts and cookouts! Be sure to check back soon for upcoming events and new information about the new study being conducted at Ohio State. And as always, if you want to become involved please contact BallouSkies! You guys rock!

UPDATE: March 12, 2012

Spring is in the air! I am beyond excited to be in shorts and a tee shirt outside barbequing some steaks! Can you tell I am ready for spring and summer?! These first couple months of the year have flown by in record speed. Donations are still coming in everyday but the BallouSkies team is very excited about our event season to begin! In the coming months our annual BallouSkies walk will take place and from there on out it’s a whirl wind of raising as much funds and awareness before the end of the year! We really want people to remember these events and tell their friends and family so that we have that many more people supporting the event in the following years. So if you attend any of our fund raising events please spread the word and tell everyone how you had a great time raising funds for a great cause. Its amazing what people can do when they come together.

Through this charity I have realized that nothing is impossible. I have overcome a lot of obstacles just to get through the day, and I will not let my physical limitations stop me from accomplishing this. I view the search for a cure in the same way, all it will take is hard work and perseverance to accomplish this. Just as I need assistance accomplishing things, the doctors and researchers need help accomplishing their goals. BallouSkies has been the assistance for Dr. Raman and her research team. I am proud to say that without BallouSkies the strides that Dr. Raman has made could possibly still be in planning and awaiting funds. We have helped to speed up this process. The Muscular Dystrophy is not going to rest and will continue to damage the heart muscle. This is why we must use every possible moment to treat this horrible disease, and not have to worry about having funding and support. I will not rest, nor will my family until every possible avenue is explored or a cure is found.

All of this is why in 2012 we need to have an even better year. The 60,000 we donated this year may be hard to top, but we will try our hardest this year to raise as much as possible! BallouSkies has done nothing but grown since its creation five years ago, and every year we have made our fund raising goal! I expect this year to be the best one yet. We have learned a lot over these past years and I believe we can use all of this knowledge to raise even more funds than in 2011. Make sure to check back for the most current information about the charity and upcoming events! Enjoy the coming warmer weather!

UPDATE: January 6, 2012

Hello all. I hope everyone had a wonderful Christmas and a happy New Year! The last two weeks were a much needed break from the monotony of the cold gray winter weather. Unfortunately that peaceful time is over and this week we were thrown back into the rush of things. However, I am excited for another year of life and another year of fundraising! This past year was our most successful effort yet. We raised $60,000 for the research being conducted at Ohio State University. This is an amazing accomplishment and our hard work and persistence has literally paid off! I would like to thank everyone who helped with our events and I am forever grateful to each and every person that has donated any amount of money to the charity! Without all of the help we have received none of our success would be possible. I can only hope that we continue to grow and raise even more money for this vital research. 2012 is full of opportunities and I believe will be our best year yet!

I have good news from my last appointment with Dr. Raman! About a week ago my dad and I made our annual trip to the Ross Heart Hospital on Ohio State’s campus. This year marks the five year anniversary of my first MRI of my heart. The results of this latest scan were awesome! The scarring on my heart has not progressed at all and my heart is healthy with normal pumping function. This is amazing news and my family and I are ecstatic about these results. It just proves that we made the right choice in taking this medicine and all of our efforts with the charity are well worth all of the hard work. I cannot think of a better way to end this past year. The best part was lunch with Dr. Raman after the MRI where we presented her with a check for $60,000! This was a great moment that I will always remember. BallouSkies has come along way since its humble beginnings and none of us could have ever dreamed that we would have been so successful! Again, this is because all of the support we have received from so many kind people. This made the holidays more joyous than ever and I can only hope we make an even bigger difference in 2012!

This year is very exciting because of the study that will be conducted at Ohio State under Dr. Raman. Dr. Raman and her research team have conducted studies on mice with MD to formally test the drugs effectiveness in slowing down the scarring of the heart muscle. Now, after careful planning and the help of our charity and the hard work of the doctors and researchers at OSU, this year Dr. Raman will be conducting this study on boys and young men with Duchenne M.D. This is very important on the road to get this drug treatment implemented for all DMD patients. If the study can prove that this drug, Spironolact has a profound effect on the progression of scarring on the heart muscle than that would be a huge step forward. I am excited for the study to be conducted and cannot wait to see the results. It is even more satisfying to know that we have come to this point because of charity and something I did is making a huge difference. Stay tuned for updates on the study and for upcoming fundraising events! 2012 is a big year for the charity and I cannot wait to have an even bigger year than 2011! Again, thank you all for everything and I hope you can accomplish everything you set out to in the new year! Stay warm and be happy!

UPDATE: November 1, 2011

So it is Fall, Winter is right around the corner, and I don’t like it one bit! Of course, the dropping temperatures and the prospect of the snow to come are not helped by the fact that I recently returned from a trip to Hawaii! In my last update I wrote about six of the BallouSkies tri-team members qualifying for the 140.2 mile Ironman race in Kona, Hawaii. Well my father and I decided we should go along with them to support their efforts in the triathlon! This was the least we could do to support these outstanding individuals. We wanted to show them that just as we inspire them, they inspire us as well. Plus, it didn’t hurt that the race is held in Hawaii! We were in Hawaii from October 5th through October 11th and had a great time visiting with the team and enjoying the beautiful paradise of the island! For any one who has not been to Hawaii, you have to believe me when I say it is something you must do in your lifetime! I could spend countless hours trying to describe the beauty and all the sights I saw, but I wanted to focus on the actual day of the Ironman race and try and share the sights and sounds of this amazing event.

Race day started bright and early at 3 A.M. In order to get down to the race start we had to leave prior to the main highway being shut down. The main road is closed to all traffic all day because the majority of the 112 mile bike segment of the race is on this road. Also we were excited to get down to Kona as soon as possible to get a good spot to see the swim start and beat most of the crowds that congregate for the race. After a minor mishap of our cab not showing up on time, we made it down to the race by catching a ride with an athlete actually competing in the race! We arrived around 5 A.M. to find a good spot to view the start of the race. We found a nice little breakfast place that overlooked the bay and the actual swim start which is the first leg of the race. Even at this early hour the streets are full of fans cheering on the athletes and actual race competitors filing there way to the transition area and race start. The atmosphere is almost indescribable. The air is filled with excitement of the amazing accomplishments the day will bring. We actually got to see two of the athletes (Chad Holderbaum and Jeremy Cornman) while they were on their way to the race start. We snapped a quick picture and wished them the best of luck for the day. BANG! A gun blast announces the start of the swim and the strenuous 140 mile journey that awaited the athletes. After we witnessed the mass start we stayed until the last swimmer was out of the water. After this we found an awesome vantage point for the run. We positioned ourselves on the side of the run course at mile 2, this way the BallouSkies athletes were guaranteed to run by us. One by one they ran by us as we cheered them on! I got pictures of all the athletes as they passed. This was an amazing feeling to cheer on these team members. BallouSkies started with just my family, and now we were in Hawaii cheering on the BallouSkies tri-team. This is mind blowing to me. It is so awesome the amount of help we have received to continue our charity and our dream. We stayed long enough to see Chad and Jeremy cross the finish line in their BallouSkies jerseys, holding up a heart sign. This was another amazing moment I will always remember! To see our hard work and the athletes’ hard work paying off is truly awesome and I am thankful for how far the charity and everyone involved has grown. I have tons of pictures of the race and the whole trip on my Facebook page; feel free to check them out! Hopefully they can convey some of the feelings the trip and the race instilled in me!

As for our latest fund raiser, it was a huge success! Last weekend we held our second annual happy hour fundraiser at Buckhead’s in Station Square. We had a good turn out, good times and managed to raise about $1,200 in the process! Thanks to all who attended and all who made the event a success! Our next big event is on November 9th. This event is our first annual BallouSkies Champions Gala being held at Enginehouse Number 25 in Lawrenceville. We are really excited for this up-scale event. Hopefully it will become an annual event! For more information about the event check out the event page on Facebook or contact me or anyone involved in the charity for more details! It has been a great couple months and I am very happy with the progress we have made! Cannot wait until the end of the year when we can unveil our total amount raised! Stay warm out there!!!

UPDATE: September 1, 2011

I cannot believe it is September already! Time seems to be flying by at an unusually fast pace. Fall will be here before we know it! I cannot believe it has been close to six months since my last update. Since that time however donations have steadily been sent to help our cause. More people than ever are recognizing BallouSkies and generously donating their time and money to help us reach our goals! The BallouSkies tri-athlete team has been very busy as well. They have competed in numerous events these past couple months proudly sporting the BallouSkies colors. I am also proud to announce that through their commitment to their sport, six of our athletes have qualified for the Ironman Triathlon in Kona, Hawaii. This is a prestigious event and only the best of the best are invited to participate in the event. These elite athletes, along with yours truly, will be featured in an upcoming advertisement for BallouSkies in Triathlete magazine. Not only does this allow us to spread more awareness for the cause, but it allows us to showcase and thank the athletes that run under the BallouSkies banner. I know that I inspire them, but they inspire me as well and I am glad to know each and every one of these individuals. As I have said before, it is always great to hear stories of people cheering for BallouSkies during these races. Another great thing I hear is just how inspiring the charity has become to other tri-athletes. It is nice to know that BallouSkies can affect and help a lot of people in various aspects of their lives. BallouSkies helps people to keep their physical heart and their emotional heart healthy. If we can come together to battle this disease we can do anything!

I now want to take time to let everyone know about the success of our most recent fund raising event. A couple months back on July 9th we held our second annual BallouSkies charity bike ride. The event took place at the Old Economy Café out in Ambridge. I want to say that anybody who has not been there has to, and I mean has to try the pulled pork. The event consisted of two separate ride: a 25 miler and a 50 miler. We could not have asked for a more beautiful day or a better group of people! Many of the BallouSkies race team members were in attendance, as well as old friends, family and a couple new faces as well. My Aunt Brigitte drove in from Chicago to be there to support the charity. Also, my cousin Josh made the day-long journey from Thailand to be there with us as well. I cannot express to them how much it meant for them to be there and how great it was to see them! It was nice seeing them and it was even better that they wanted to help the BallouSkies cause. This event helped me to realize how lucky I am to have such great people surrounding me and jumping at every chance to help raise money and awareness. In just one day we raised just over $4,000 and had a blast as well. As I mentioned the food and drink were delicious! A live band played music and the atmosphere was festive. These events make all the hard work worthwhile. I find so much satisfaction in being able to thank everyone for everything they have done for me and the charity as well. In the next coming months we should have more details on our next event so look out for that on the site.

I will end the update as I usually do. If anybody out there would like to become involved or learn more about the charity please don’t hesitate to check out the website or contact us directly, I would be happy to help people to become involved. We are always looking for ways to improve our events and welcome any suggestions! I can only hope that BallouSkies will continue to change individuals lives and as always, gain more attention and assistance from all of the wonderful people I have become involved with since the forming of BallouSkies! Every one enjoy the transition from summer to fall and be sure to check back often for updates on research breakthroughs and upcoming BallouSkies fund raising events!