Expedition Awareness: Press Release

Scott Brady

Founder
NOTE: THIS IS A PRESS RELEASE FROM EXPEDITION AWARENESS. EXPEDITION PORTAL HAS NO ASSOCIATION WITH THIS ORGANIZATION

PRESS RELEASE
Overland group announces project for ALD.
Adrenoleukodystrophy and Early Childhood Screening Awareness.
Wichita Falls, TX, April 25: Expedition Awareness, a charity based overland expedition organization, announced today that their first project to raise awareness for Adrenoleukodystrophy and early childhood screening for the
disease. Adrenoleukodystrophy, or ALD, is a genetic disorder affecting 1 in 18,000 boys. There is no cure and very little in the way of treatments. It is a devastating disease that usually takes the life of the child within two years of becoming symptomatic. A 1992 film, “Lorenzo's Oil” offered some insight into the disease.

Expedition Awareness was founded by Phil Golden and Chris Nash. The mission of the firm is bring about a more proactive approach to finding a cure or viable treatment through awareness and fund raising. Golden and team have joined forces with the ALD Foundation (Slidell, LA) and believe they can make a difference. They hope to capture the spirit of adventure and use it to spread their message.
“This project started out as an idea that just snowballed into reality.” Golden stated when asked if he ever suspected such an overwhelming response to the idea. “When I found out my unborn son had the potential for contracting the disease, my buddy Chris and I began work immediately.”
Golden's son was at risk for the disease as it is a hereditary disorder passed from the child's mother. Golden's wife was adopted and much of her family medical history was unavailable to them. Testing confirmed that first his wife was a carrier and later his son was predisposed. He is currently asymptomatic.

The Expedition will begin at the US/Mexico border and criss-cross the Continental Divide all the way to Banff, Canada. The northern route is 95% off-road. Until very recently the guys are planning to take two specially modified Jeeps and are pulling two highly modified off-road trailers. As it turns out Golden will be completing the expedition solo due to Nash's unforeseen family and work commitments. “This is bitter sweet since Chris will be running base camp now and frankly I am glad he will be in charge back home. Having said that, a journey like this can be quite
dangerous and however appealing the idea of solo adventure is, there is no denying the potential for the unforeseen such as breakage, injury, sickness, and fatigue.” Golden stated.

Contact: Phil Golden
Expedition Awareness
Wichita Falls, TX. 76310 EXPEDITION AWARENESS
EXPEDITION-AWARENESS.ORG
OVERLAND GROUP ANNOUCES PROJECT FOR ALD. PAGE 2

The number of Expeditioneers has changed but the route is staying the same.
When asked about the route, Golden had this to say. “The CD (Continental Divide) route is amazing. We have it
mapped to the exact GPS turn. We will be above 5000 feet altitude over 80% of the time. I have a friend in the dual sport world that has shared his coordinates with us. But even the Tarmac has a lot to offer once I head east. “ Nash added, “And Phil will be heading east from Banff. He will point his Jeep and trailer to Brooks, Canada and then on to Winnipeg where we will turn south back into the US. From there he will make his way to New Orleans, La to present the ALD Foundation with our gifts.”
The team is setting aside nearly 2 months for the entire trip. However they feel confident they can beat that deadline.
Golden will be stopping along the route to share their message with pre arranged media appointments, sponsor receptions, and any one else that will listen. He will have satellite communications and tracking equipment on board allowing anyone to follow their progress and check in for daily updates.

In addition to their marketing campaign, the guys are also filming an adventure documentary of the entire project. In fact, filming has already begun. They intend on distributing their work to the ALD Foundation at no cost so that the foundation may give it to affected families. They have also made arrangements to have the film screened in a Shreveport, LA film house and by a prominent production company.
Golden is taking several cameras that have been used in similar productions including SurvivorMan, Long Way Down, and many others.
“I want to capture the essence of the trip in such a way that anyone interested in overland travel, camping, adventure,
off-roading, or just ALD will want to watch it. Think of this project as 2/3'rds adventure and 1/3rd education. I do not want another stuff shirt documentary that will only bring further distress to ALD families. I want something that puts smiles on faces.” Golden said about his newly coined “adventurementary”.
The team has many planned functions before the actual expedition takes place (May, 2011) including exhibitor shows, meet-n-greet functions, special appearances, and shake down runs. Nash closed with, “We just want to make a difference. It only takes one person to do that and we need to find them.”
Golden added as he cleared the obvious discomfort from his throat, “What would you do if your child was facing such an oppressive monster? The answer is everything you could. Hug your children. Never take a moment for granted.”

To learn more about their project and how you can help, visit: http://www.expedition-awareness.org. You can follow
their website, blog, Facebook, or Twitter
 

TJ Willy

Adventurer
The Reader's Digest Version

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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."

lorenzos-oil-DVDcover.jpg


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.

The rigs:

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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.

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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.

Second, 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:

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: Expedition-Awareness | Exploration for a chance at Hope.
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: EA Facebook
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: EA Twitter
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: 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,
Phil
 

adventureduo

Dave Druck [KI6LBB]
Awesome expedition for a great cause. Glad we could support you guys in your adventure. Sorry to hear its a solo trip... hmm can i invite myself in our rig? :D
 

1leglance

2007 Expedition Trophy Champion, Overland Certifie
I am glad to see such a creative effort being made to bring awareness to something that is now very much a real part of your life Phil.
I look forward to sharing notes & info from the Disabled Explorers Continental Divide Expedition and I look foward to any way DE can help.
If you encounter any families with youth suffering from this disease that have a desire for a camping or backcountry travel experience please send them my way.
As a ICU RN I am comfortable providing any level of care they need all the way up to caring for someone who is vent dependent. The WAVE is setup to handle 110vAC full time so we can run a wide range of medical gear.

Anything you need just say the word.
 

TJ Willy

Adventurer
Awesome expedition for a great cause. Glad we could support you guys in your adventure. Sorry to hear its a solo trip... hmm can i invite myself in our rig? :D

Thanks Dave. It was great meeting you at the Expo and I appreciate your support!!! Trasharoo kicks mucho hind quarters... especially 2.0.

As for the invite :), a few people, like yourself have stepped up to join in. I suspect that for certain parts of the trip, there might be folks coming along. I welcome this. In fact, it will be a great relief to know that along the way, if trouble presents itself, a geographic network of folks along the entire route (not just the Divide) could be around to assist. I may create an area on the website for folks to submit their contact info and what services they might could provide in the event of trouble. We will see. I guess it depends if folks continue to come forward.

Again, I appreciate you two for what you have done thus far. Let's keep in touch.

By the way, your last blog post had some awesome pics. I have been meaning to tell write you since I saw them.

:)
 

TJ Willy

Adventurer
I am glad to see such a creative effort being made to bring awareness to something that is now very much a real part of your life Phil.
I look forward to sharing notes & info from the Disabled Explorers Continental Divide Expedition and I look foward to any way DE can help.
If you encounter any families with youth suffering from this disease that have a desire for a camping or backcountry travel experience please send them my way.
As a ICU RN I am comfortable providing any level of care they need all the way up to caring for someone who is vent dependent. The WAVE is setup to handle 110vAC full time so we can run a wide range of medical gear.

Anything you need just say the word.

Thanks Lance... you are definitely one of the good ones. It was a treat getting to know you at the Expo. I look forward to our collaboration efforts. By the way, I sent you a reply or two tonight.

As for the backcountry experience, awesome! I actually have a kiddo in mind. Not sure anything could come from it, but I will contact him. He is a brave kid who recently endured a bone marrow transplant. What an awful experience, yet his smile is so bright. Such a brave child. Until recently, I have pretty much avoided the "stories" out there for obvious reasons, but his bravery is moving and offers hope where often little exists.

This is his facebook page.

Melissa, my wife, is in contact with his mom. We will throw a feeler out there. You never know.

Thanks!!!!!!!!!

:)
 

1leglance

2007 Expedition Trophy Champion, Overland Certifie
I used to work in a Bone Marrow Transplant ICU by City of Hope...I understand completely what he went through...at least from a caregiver perspective..only the patient ever really knows the truth of it all.

DE & The WAVE is always ready to serve.
 

TJ Willy

Adventurer
I used to work in a Bone Marrow Transplant ICU by City of Hope...I understand completely what he went through...at least from a caregiver perspective..only the patient ever really knows the truth of it all.

DE & The WAVE is always ready to serve.

I bet you two would get along great. We will see how it goes. I really hope this would work out for him. I know you are game... Parents are so protective... you know the drill with sick children. But if there was anyone or anyway for it to happen, it would be with DE and the WAVE. Imagine the smiles....
 

TJ Willy

Adventurer
I used to work in a Bone Marrow Transplant ICU by City of Hope...I understand completely what he went through...at least from a caregiver perspective..only the patient ever really knows the truth of it all.

DE & The WAVE is always ready to serve.

I bet you two would get along great. We will see how it goes. I really hope this would work out for him. I know you are game... Parents are so protective... you know the drill with sick children. But if there was anyone or anyway for it to happen, it would be with DE and the WAVE. Imagine the smiles....


Hey Lance, I spoke with Chris today as I wanted to send him an EA t-shirt and he said his Mom is looking into everything. I gave them your website and told them to contact you or me for more info. Will let you know if I hear anything back.

You going to be busy this weekend???
 

1leglance

2007 Expedition Trophy Champion, Overland Certifie
I am going with a disabled vet for a Moab adventure in the WAVE.
And best of all we are meeting up with a wheelchair dude who has been overlanding for years in his 4wd.
I should be an epic 4 day trip.
You can go to www.disabledexplorers.org and click the SPOT link to track us starting in the am.

I will get in touch with you upon return, thanks
 

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