Today marks Day 2 of the “79 Days of Duchenne”, and I want to really thankKoli Cutler for making such an impressive and heartfelt video….and he didn’t even have to say a word.
Most of you Duchenne is an extremely destructive disease, as it deteriorates the muscle far to quickly. Any family shudders when their son is diagnosed with Duchenne, especially since there is not yet a cure. Can you imagine your son being diagnosed with Duchnene and being born deaf?
I dedicate this video to Kyle Cox, because he has Duchenne and is deaf - and through that all, he has a spirit that lights up a room. A few weeks ago, I met Kyle for the first time, and I am honored to know him and to be his friend. Hope you like the video Kyle.
Please friends SHARE this video and ask others to share it too. We must fight together so a cure can happen faster for my brother, Kyle and everyone else with this terrible disease.
Together, we CAN Cure Duchenne!
The 79 Days of Duchenne has officially begun! Please do not forget to share the video, and ask your friends to share it too!
It’s such an honor to have Addison Station’s video be the first video released! I am so thankful to have them helping us spread the word about Duchenne. You guys rock! Make sure you head over to YouTube and comment on Addison Station’s video - let them know how awesome they are!
Together, we can Cure Duchenne. Together, we will Run Away!
No matter how much, “You got to be freaking kidding me”, life throws out you.
I am always find it very difficult and exhausting trying to get others to care about Duchenne and actually understand the urgency all of our families are facing. I never get upset when others choose not to care, because honestly I use to be the person not “caring”. I would sympathize with others when they told me about their situation, or disease and so on. I would care only by sympathizing, but it would stop at that. I would never act upon beyond sympathizing, and although I hate to admit it, I would forget to check in and see how those others were doing. I let MY life get in the way and let it be more important. I made a lot of stupid, horrible, selfish decisions that I cannot change, but I know that I am one of the few that has learned from previous mistakes.
Ironically, I am now one of those families living in a situation, begging, hoping, praying that I can get others to care about my brother, friends and all others with Duchenne. My job is to find people to understand how much we need their help, and how to not let a bad situation occur in their lives before they step up and take action. It’s something I have to live with, and I know that I have to work so much harder because of it. As a community, we need to build up our supporters by our determination and inspiring hope. Even though it’s often hard, we must keep the negativity out of our lives, especially out in the open.
Every time my brother falls, I wonder if he tripped over something or is it his muscles getting weaker. It reminds me to keep working harder, stay persistent and to use my time efficiently. I know it’s going to take a lot of time, energy and patience to get more people to care. I know caring people exist, they are out there, people can always be convinced to help. I pray to everyday for God to help us Cure Duchenne faster, he responds by putting me in situations and people into my life that can help make that happen.
"Nothing in this world will take the place of persistence. Talent will not; there is nothing more common than unsuccessful people with talent. Genius will not; unrewarded genius is almost a proverb. Education is not; the world is full of educated derelicts. Persistence and determination alone are omnipotent."
- Calvin Coolidge
Over the weekend we shot a music video for the Acoustic version of “Run Away”. I think it’s going to turn out really great! Between the emotional tone and the visual concept of the Acoustic version - I think it’s going to be a very effective awareness video. I worked with Dark Horizon Studios again - and had such a great time with them! They all work very hard, ad I appreciate that they are always willing to help out in anyway they can.
I had a very special guest join me on set, Miss Amanda Wolf. I first met the Wolf family last July when they came to Pittsburgh to watch the filming of the first “Run Away” music video, their son Jack also has Duchenne. I consider the Wolfs AKA The Wolfpack as my second family - they have been such a great support system for me and I adore their kids, Jack, Mark and Amanda. I was so honored to have Amanda be in the video, every time I look at her, I see parts of myself.
I am hoping to have the video come out before the 79 Days of Duchenne - but I don’t know how long editing will take. We have hours and hours of footage, so it will take a awhile to sift through. I will keep you all updated on the process!
Until then - help us with the 79 Days of Duchenne awareness campaign and help us spread the word about Duchenne. We need to help this generation of boys NOW! Don’t get in the habit of doing stuff later, because it usually never gets done. Start changing habits now by getting board and helping CureDuchenne. For more information on the 79 Days of Duchenne please go to: www.smarturl.it/79Days
Thank you to Brian Wolf for setting up an interview at Q104 Cleveland! Q140 - Fee’s Company gave us the prime time spot to play “Run Away” and for the interview! For those of you who don’t know, my song “Run Away” was written for my brother, Jacob and all others with Duchenne. The song is donated in it’s entirety to CureDuchenne (CureDuchenne.org) to fund research. Thank you so much for helping us spread the word about Duchenne - It’s people like you that make such a difference! Tune in to Q104 at: http://tunein.com/radio/Q104-1041-s22111Make sure to call Allan Fee, Glenn Anderson, Carley McCord and Woody M-F mornings between 6:30AM and 10:00 AM ET, and request “Run Away”! It will help spread awareness and raise funds for CureDuchenne! You can Text “Q104 + your message” to 96750
Twitter: @Q104Cleveland or @FeesKompany
After the show we got to watch Fee’s Company help make a video for the 79 Days of Duchenne! Everyone was being really silly and having a great time, I know the video will turn out great! It’s pretty amazing that so many people are willing to take the time to help spread awareness in a unique way. If you’re not sure what the 79 Days of Duchenne is, please got to: www.smarturl.it/79Days
Thanks again to everyone who was involved in making this event happen - I look forward to doing more events like this in the future.
Together, we can Cure Duchenne. Together, we will Run Away!
Hahaha - not sure why my face looks so angry! :)
79 Days of Duchenne - What it is & how you can help!
Two years ago, my 7-year-old brother, Jacob, was diagnosed with Duchenne Muscular Dystrophy, an extremely fatal muscle disease in boys. Currently there isn’t a cure, and life expectancy is between the ages of 18-25. Initially, my family’s reaction to this devastating news was nonproductive. In the past year, each of us has begun doing our part to help Jacob and so many others in his shoes—we are literally racing against time.
On December 4, I released my song “Run Away” under my own record label—I have never released a song without the help of a label before, so this was quite a challenge in and of itself. We took special care to ensure that the only percentages retained from downloads of “Run Away” would be the amounts that iTunes (and other retailers) withhold on every download, and that’s it. (In many cases, record labels, publishers, songwriters, producers, and musicians would also try to retain a percentage.)
We made The Run Away Project (www.TheRunAwayProject.org) possible by paying every single cost out of our own pockets. My husband and I covered the majority of the expenses, which totaled over $10,000. CureDuchenne.org reimbursed $1,500 of the music video’s production costs, friends donated $600 towards recording costs, and many of the service providers lowered their rates on this project.
The result of all this means that 100% of the proceeds from “Run Away” will go straight to CureDuchenne.org—starting from the very first download. No costs will be recouped. We have already received a lot of media coverage and thousands of views and shares… Unfortunately, the word about Duchenne hasn’t been as big as we had hoped. To put a stop to this vicious disease, we need the help of other people raising awareness too, and this is where I think YOU could be a huge part in that. :)
There are 79 exons in the dystrophin gene; dystrophin is missing in the body of a child with Duchenne. Without dystrophin, muscles can never repair themselves and get stronger. The plan is to start the 79 Days of Duchenne, each day releasing a new video of “Run Away.”
How you can help:
ANYONE who would like to participate by performing “Run Away” in their own way is more than welcome. You can use absolutely any creative idea you have, no matter how strange or weird it might seem… Whether it’s you and a camera or you and an entire production team, ANY video will be greatly appreciated. With so many talented people coming together, all at once, I believe there is huge potential to raise MAJOR awareness for Duchenne. Would you please help with this project? Will you help my brother and everyone else with this devastating disease? Will you help Cure Duchenne?
Here is MY video to “Run Away”: www.SmartUrl.it/RunAwayVideo
If you also have friends, family or co-workers who might be interested, please pass this along. The “Harlem Shake” went viral with other people making videos, and I am hoping to create the same thing—but for an AMAZING cause. Here are some ideas of videos you can make:
I really hope you’re interested in being a part of this project.
Download the project details at: www.smarturl.it/79Days
If you have ANY questions, inquiries or want to help in another way, please email me at Sarah@TheRunAwayProject.org or call me at (724) 650-2867.
At the beginning of your video, please say the following in an intro, outro or message in-between (feel free to adapt it.)!
“Every day, people are challenged with explaining the severity of Duchenne to others who haven’t dealt with the disease personally. Most people are unaware of how Duchenne affects the muscles and the restrictions 1 out of 3,500 boys deal with. Truth is, most families have a hard time even saying the word ‘Duchenne.’ That’s where I [we] come in. I am [we are] the voice for the ones who can’t speak up. Currently there is no cure for this extremely fatal disease, but real progress towards a cure is being made.
Sarah Burgess is a singer who approached me [us] and asked me [us] for help. Two years ago, her 7-year-old brother was diagnosed with Duchenne. She wrote ‘Run Away’ to raise awareness and help her brother. Now I am [we are] helping her and ALL affected by Duchenne. Here is my [our] take on ‘Run Away.’
Together, we can Cure Duchenne. Together, we will Run Away!”
Send your video via email and do NOT release it! I will give everyone a specific date, and we will release the videos together, one by one.
Send videos & information about yourself to: Sarah@TheRunAwayProject.org
Thank you so much for taking the time to read this, and I look forward to having you on board to help change the lives of those with Duchenne.
Almost two years ago my brother Jacob was diagnosed with Duchenne. It’s the most common, most fatal progressive muscle-wasting disease in children. Currently there is not a cure for this taker of young lives or even drugs to stabilize their muscles. Some parents have even wished cancer upon their child, because at least there would be a chance.
At first I didn’t believe in his diagnosis, I thought they must have gotten it wrong. When I saw Jacob with my own eyes start to deteriorate, I knew that this was our reality and something needed to be done about it. I couldn’t just continue down the road I was on, worrying about the stuff that simply didn’t matter.
I now use all of my God-given talents to help my brother Jacob and ALL other boys with Duchenne. In December, I released a song called “Run Away” that I wrote for Jacob and for ALL boys inflicted with this disease. I donated the song in its entirety to CureDuchenne.org to raise awareness and funds for research. Getting to know the founder of CureDuchenne, I discovered she was a Christian. I knew how deep her faith ran by the essay her son, Hawken, wrote when he was in 8th grade. Hawken, like my brother, has Duchenne.
This I Believe: Purpose Through God
I believe in a God who gives everyone the opportunity to live out his or her purpose in life – whether to provide the less fortunate with opportunities, or to spread the messages in the Bible, so everyone may have the opportunity to know God. It may seem that not everyone has these opportunities, but he or she eventually has a time in life when they expose themselves to God. No matter what problem I have, I will have the opportunity to know in the future that because of my faith in God, I will have eternal life in heaven. Life cannot be used for the sole purpose of making money and having the most fun on earth you can have. I believe that life should be lived out for a reason: to help other people or to do whatever God has intended for me to do with the many blessings every day brings. This thinking has helped me live through the problems I face each day.
I have not lost my father or mother in life, but instead I have been diagnosed with a rare muscle disease. God has given me solace when I do not know which direction to go, when I do not know what to do in life, and when it seems like I have nothing to live for. He has shown me that no matter what my problems are on this Earth, coping with them for the relatively short time we have, and spreading the news of the Lord, is much better than feeling bad for myself and doing nothing with my opportunities to spread the word and do the most good under Him.
Other people are stronger, more good-looking, and better off than I am. This notion does not faze me one bit because however I stand in life doesn’t matter unless I have a purpose to fulfill and have faith that God will provide. Many people try to make as much money as possible and have as much wealth as possible because it will make them happy for the rest of their life. I never want my sole purpose in life to have money for happiness, because when I am doing good for others the happiness never stops. Just because I am hampered though my physical ability, [it] does not mean my ability for caring for others stops and my embrace for doing good stops. When I start to feel bad for myself, I must count my blessings every day and know that contributing to my purpose in life will bring much more happiness to me than obsessing over how other people are better off than I am. If I start to think about it, it seems as though this disease is a blessing that humbles me and helps me turn my problems and myself to God.
By: Hawken Miller
When I read this essay written by this young man, wise beyond his years, I’m embarrassed because it’s hard for me to see the blessing in this devastating disease, because wouldn’t that be selfish? Wouldn’t that be terrible?
I wonder all the time why it took a tragedy for me to wake up and realize what life is truly about and how God is truly always, always there. Joshua 1:9 states, “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
I have put my trust in God, and even though I have no idea why this was put into our lives, I know we are not to be discouraged; we are not to fear; we are to just TRUST Him. Since December, I dedicated my life to saving my brother’s. I have spoken in front of the FDA, ran a half marathon without training, rode my bike 50 miles without training, attended numerous events, started countless advocacy campaigns, and just recently met and spoke with congressmen about the MD CARE Act and accelerated drug approval. I live and breathe Duchenne, and I can’t say I don’t get discouraged or live in fear, but I know God is always giving me what I need in the form of a new Christian friend or a bible verse placed too perfectly to be ignored. This, I believe, is the purpose through God.
Please watch this video I made for Duchenne Awareness…If you weren’t able to go to Disney for the Run for our Sons/Brothers Marathon weekend, or keep up with my posts, you can get an idea of what it was like in this video. I even took my GoPro on the run…Please share and help teach others about Duchenne Muscular Dystrophy.