BENEFITING: (IFOPA) International Fibrodysplasia Ossificans Progressiva Association
ORGANIZER: THE IRONMAN FOUNDATION
EVENT: Your Journey Your Cause 2017
My name is Bud LaMonica. I am an athelete who is participating in the 2017 Ironman race in Chattanooga, TN. I am training very hard, and I am motivated by my desire to race for and uplift a young man named Samson Hixson, who was born and diagnosed with a very rare genetic disease called FOP (Fibrodysplasia Ossificans Progressiva).
I would like to tell you what FOP is, Why I choose to support the research for a cure for FOP, and challenge you to desire to help see a cure for FOP as well.
FOP is a rare genetic disease. There are approximately 800 people diagnosed with FOP across the globe. People with FOP endure symptoms which include muscle, tendon, and ligaments that progressively turn into bone throughout their life. The progression of the symptoms of the disease are triggered by flare-ups caused by trauma and or the everyday bumps bruises that many of us take for granted. Over time, a person who suffers from FOP, will gradually loose mobility in their joints as they fuse together and the person eventually becomes immobilized within their own body. However happy, life loving, and inspirational, and adventurous their personality may be, they become resigned to a life of inactivity.
With so few cases worldwide, there was not much scientific knowledge about the causes of FOP until very recently. The International FOP Association (IFOPA) was founded in 1988, and has been the motivational force behind finding a cure for a disease that has no known effective treatments. Please read about them at the following website: http://www.ifopa.org/
Currently, there is only $1.5 million dollars per year used in the search for a cure. This pales in comparrison to much more common diseases which may affect tens of millions of people. Typically, the more common a disease is, the easier it is for research on that disease to obtain scientific grant money, as well as garner motivation for corporate research to investigate a cure. With so few people diagnosed with FOP, there was little economic incentive for drug companies to fund research and find a potential cure. There is a benevolent reason for searching for a cure. And the IFOPA has been capable of teaming with the University of Pennsylvania School of Medicine in a search for the cure. http://www.ifopa.org/research/upenn-collaborative-research-project.html
After 15 years, in 2006, the Gene that causes FOP was discovered! This was paramount, and also pivatol in the search for a cure.
With such a small $1.5 Millon annual research budget, it is possible to impact the budget with any size donation. There is currently a study being done which is seeking FDA approval for a treatment that can reduce and delay or prevent the severity of flare-ups and the progression of the disease, and I am anticipating that it is time to push forward for the cure. Get the funding required to put more tools into the hands of the researchers and get more staff into the research labs. Give the people who desperately need an effective treatment option something that can provide them with a way to prolong their mobility and slow the effects of this disease. To the person needing an effective treatment, everyday they wait is a day closer to complete immobility.
How I met Samson:
As with many of you reading this, I was not a regular gym rat, or fitness junkie. But, I had met the Hixson family who's older Son, Maximus, played little league baseball with my Son, Sam. Maximus' younger brother Samson was born with FOP, and his mother Candace had shared her family's experience with this new journey in their lives with all of her friends and community. I learned that 75% of all research funding was raised by the families of the people with FOP. When she hosted a benefit 5K race to raise money for research, I trained and participated in the first race that I had entered in over 15 years. I was compelled to continue training after this race, not knowing where it might lead me. But, I was also compelled by the notion that I had been blessed with an able body, but had not been using it to my fullest potential. I was compelled because Samson was the rambunctious younger brother, the one who naturally takes up sports and gets labelled as the wild child, the one who most people would think is the difficult child to raise. But they miss what is really at the core. He is too smart for all the rules, he wants to soak up every bit of this life, and charge ahead, When he apears to require his mother's full attention, he is also blessing her with his full connection. My youngest Son, Luke, is 2 years older than Samson and he acts the same way. While capable of being very trying at times, is also capable of being the sweetest child.
People who suffer from FOP have all the same aspirations and ambitions as everyone else. And in some cases, even more so.
So, I choose to support the IFOPA. I choose to race for, and uplift those who may not be capable of racing. I choose to make an impact in the fight to cure a rare disease. One in which many of those affected have felt like there has been no hope, and no one standing for them. And that is why I am donating to the IFOPA. Because they have provided the hope for people with FOP. I would ask you to consider what you know about the personality of Bud LaMonica, the genuine concern that I have for this issue, and our friendship and relationship, and how much you trust my desicion when you decide to stand with me. Learn about this rare disease. Study the IFOPA, and read about the groundbreaking current research. I believe that we are going to help push them through. Others have come before us and devoted their lives to getting a viable treatment to within sight of the near horizon. But, they need to feel and know that their community supports them and will put some extra momentum into the sails of their ship.