First off, Thanks Grant for believing in our cause and offering this area for me to post our project.
Expedition Awareness is our project to raise awareness and funding for Adrenoleukodystrophy. This is a deadly disease that affects 1 in 18,000 little boys. There was a movie based on a true story several years back that offers some insight into disease called "Lorenzo's Oil."
We found out recently that our seven month old boy has this disease. Earlier we found out my wife had the potential as a carrier when she was 7 months pregnant with our son. She was adopted and family medical history was slow coming. We also learned that her brother passed of this disease. Within the past few days we were told that our nephew also has this genetic disease.
ALD is a demyelinating
disease. Like the electrical wire we use, our nervous tissue is surrounded by an insulating sheath. Adrenoleukodystrophy strips away this insulation causing all manner of problems eventually leading to a vegetative state before death. Because the disease is X linked, it is the females that can carry this disease and males that die from it. We will soon find out if our 2 year old daughter is a carrier. We pray she is not for the sake of her having children one day.
I began working on this project 9 months ago with the help of a close friend with hopes our son would not get the faulty X chromosome but realizing something must be done. We got the bad news this past January.
My solo overland expedition will begin in Antelope Wells, NM and will criss-cross the Continental Divide, 95% off road, to Bannf, Canada. From there I will head east across four provinces before turning south for New Orleans, the HQ for the ALD Foundation.
I was an avid rider not even owning a cage for myself but sold my bikes to pursue this project. I chose to buy a used 2008 Jeep Wrangler four door for this mission and I will be pulling an Outlander overland trailer. I will be camping the entire way.
I am filming an HD documentary in the style of "Survivorman" and "Long Way Down/Around" for distribution for free through the ALD Foundation.
Even though my friend and I have done all our own work from website to gear swap on the Jeep to save money, this project has tapped my families finances.
My mission is TWO FOLD:
First and foremost
, I want to educate the public to the need for EARLY DIAGNOSIS of this disease. To do this, I have partnered with several media sources, print, radio, and television. The disease has a very fast progression and needs to be diagnosed and bone marrow transplant surgery done in the first couple of months to hopefully stop progression of the disease.
, I need to raise money to help fund this project and research for new clinical trials via the ALD Foundation. A new and exciting trial treatment was announced in Europe late last year. The ALD Foundation has been instrumental in getting the trials approved in the US - no small feat. We want to do our part to help further fund this process.
For information concerning the trials, click the image below:
These are both very important goals and is it goes with anything worth doing, it will be difficult. But through perseverance and the generosity of others, I and many others, believe we can make a difference.
To learn more about ALD, our project or to follow our progress visit:
: Expedition-Awareness | Exploration for a chance at Hope.
: EA Facebook
: EA Twitter
: The Adrenoleukodystrophy Foundation: Information and Research on ALD, AMN and Addison's Disease
Once the expedition launches (May 2011) you can follow my spot tracking page. I will also be keeping a video journal and updating my online journal almost daily as I will have satellite connectivity for the entire route thanks to Outlander.
I appreciate your taking the time to read my lengthy post. There is much to say and it is often difficult to narrow down the message. Much more is being done and if you would like to learn more you are welcome to contact me directly at philgolden at expedition-awareness dot org.
Ride like you are invisible,