BENEFITING: Mitochondria Disease Action Committee, Inc.
EVENT DATE: Jun 01, 2015
In March 2014, about one year ago, my 15 year old son, Hugh was diagnosed with Mitochondrial disease. I had never heard of MITO until then. In short, it is a disorder within the cell that inhibits the production of energy needed for his body to function properly. It appeared first as myopathy, which is weakness in his muscles. He could not ride his bike a city block without muscle pain or climb 2 flights of stairs without stopping. Then his stomach and digestive system began to slow down in the form of dysmotility and failure to thrive and grow. He has since had a GI tube inserted in his stomach which he feeds himself liquid meals. This has allowed him to begin to grow through much needed nutrition. His body's immune system is weak and he does not fight off infection well. Currently he has a staph infection on his face which will not go away through regular combat with antibiotics and IVIG treatments. He has been out of school since January. Health insurance does not recognize many treatments such as the IVIG infusion as a viable source for treatment because of the lack of knowledge and understanding of the disease. We continue to work towards a solution.
About 1 in 2,000 children in the United States will develop mitochondrial disease by the age of 10 years.
My goal is to raise money so that we may find better ways for patients and families to manage symptoms and better live with MITO, and hopefully to eventually find a cure. My hope is to raise awareness for this disease so that others who may be affected with it will be diagnosed early. My hope is that MITO will grow in awareness to become as common a household word as that of cancer.
For the past 6 summers I have been section hiking the Appalachian Trail northbound from Springer Mountain Georgia. Thus far, I have reached near Roanoke Virginia. I have hiked a total of 700 miles. This summer I intend to hike 300 miles from Roanoke to the Maryland/Viginia border in 30 days during the month of June. My intention is to transform the energy spent on the trail into the dollars needed to give support for patients and families suffering from MITO.
My goal is to raise $30 for every mile I hike this summer. I ask that you please consider sponsoring my cause for at least 1 mile. If 300 people support me for 1 mile at $30, I will reach my goal of $9000. 100% of funds raised will go directly to http://www.mitoaction.org/
Also, please spread the word by sharing this link and my cause through all social media such as Facebook, Twitter,etc. There are easy access links found below.
Lastly, if you are a hiker, please consider joining my team and transform your hiking energy into supportive dollars to raise awareness and support for MITO. Click on 'The Team', and then 'Join the Team' to join the cause.
Thank you for your consideration.
100% of funds raised will go directly to MITOACTION. MitoAction's mission is to improve quality of life for all who are affected by mitochondrial disorders through support, education and advocacy initiatives.
You can learn more about Mitochondrial Disease and MITOACTION at their website: