Well, today is the day. For some, it is just a Saturday, and for others the first day off on their weekend after a long work week. Today, I begin my 127 day- 3,100 Mile (3rd and Final) Run across the Continental United States of America from New York City to San Diego- the 2015 Run for Rare.
See Press Release for recap of story to date so far (link below).
For those affected by a Rare Disease around the world, today is YOUR day! Today, February 28th, 2015 is International Rare Disease Awareness Day. I hope with the greatest hope the communities, cities, states, and countries will take a pause today and rally around and recognize their local citizens affected by the rarest, undiagnosed, and even unknown Rare or “orphan” diseases or disorders.
First of all, let me define a “Rare” disease (also referred to as “orphan” diseases).
A “Rare” disease in the United States is any disease that affects a population of 200,000 or less.
According to the National Institute of Health (N.I.H.), approximately 1 out of every 10 Americans is affected by a Rare disease or disorder. That is 10% of the general population of the United States. Simply put….. 30 MILLION AMERICANS ARE AFFECTED BY A RARE DISEASE. There are over 7000 discovered and known Rare diseases globally affecting an approximate 350 Million people worldwide. Each disease is distinct and separate from another Rare disease, but collectively and as a whole, RARE affects 30 million Americans.
Did you ever know this alarming fact until now? I sure did not.
30 Million Americans affected by RARE…..I call that a significant social issue if not already an impending national health issue. According to the EveryLife Foundation for Rare Diseases, 95% of Rare Diseases have not one single FDA approved drug or treatment.
About 5 years ago, I saw an opportunity to help out some childhood friends named Catie and Annie Allio (who were diagnosed with the rare Batten Disease). I knew the girls since I was 13 years old from local church in Vacaville, CA. Their father Joe Allio was my youth group pastor and local Fairfield police officer. Special Note: Congratulations to Joe on his promotion last month to CHIEF of POLICE in Fairfield. I am honored to know you, Sir.
So, after researching Batten Disease as an adult, I was bothered enough to take big action and Run across the USA in 2011. I did it again in 2013. For sake of time, read the Press Release. I will be blogging for 4 months to catch everyone up The only contribution I truly could make was with my voice and with my legs. I was not influential. I was not wealthy to contribute through a charitable contribution. I was just a young man from Vacaville with a big idea. I was an athlete who thought running across the Continent would reach others to help somehow get people talking about Batten Disease. Well it did work, twice. A smashing success for Batten Disease awareness. I am eternally grateful for all who have supported, cheered me on, and helped in my efforts to help others fighting Batten. Thank You.
In 2015, I Run for Rare Diseases as a whole. I still have something left to contribute, and I will cross America one last time to find as many people with a Rare Disease and help tell their story through blog, social media, news outlets, speeches, and appearances. You will never find someone stronger than one who is battling daily for their survival. They are my heroes. they inspire me daily to go the extra mile. If you are affected by RARE, I will do my best to find you and tell your story.
So, today I begin my 3rd Run at the Statue of Liberty, the world’s foremost famous symbol and beacon of HOPE and OPPORTUNITY. I am thankful and grateful for the country I was born into- the great United States of America. I am a forever changed man after witnessing firsthand the true kindness and extreme generosity of the American People in my travels. I love my country. I love the American Flag and what Her Stars and Stripes represent. I love the American Soldier and the centuries of service and sacrifice he and she has so valiantly expressed and dedicated. I am not a soldier, but I have found a way to serve my country the best way I know how- RUN and represent and advocate and raise awareness for many who do not have the opportunity I have at this very moment. I will be carrying the American Flag again everyday, through all weather, all temperatures, all variables, across the Land from Ocean to Ocean from Sea to Shining Sea from today Saturday February 28th, 2015 from the Statue of Liberty to July 4th, 2015 to Ocean Beach in San Diego.
Day 1 starts soon so I must get ready shortly. Have been planning around the clock for today with Luminous Pictures and Run for Rare feature-length documentary Director/Producer Ezio Lucido and to ensure the RARE story gets told appropriately, delicately, and honestly. Ezio Lucido, thank you for your kind heart, open mind, and dedication to RARE.
Day 1 is dedicated to a young girl named Mary Payton Vigil from Mandeville, Louisiana, who sadly lost her battle to Batten Disease unexpectedly 3 days ago. She was 11 years old. Please say a prayer for her family- parents Joe and Nikki Vigil and younger sister Maison. Mary Payton is free from the horrible Batten Disease and she is greatly missed. She inspired all who knew her. I know she will be watching over me today with the other Batten Angels I have come to know and seen go way too soon. Mary Payton, today is for YOU! A few pictures to honor Mary Payton and family who I met on my initial 2011 Run. Thank you Joe Vigil- who is also serving our country in Uniform.
A video from my trip through LA in 2011:
Gotta hit the Road. Blog later tonight. Thank You all