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NATIONAL FABRY DISEASE FOUNDATION

The Fabrys Walkabout

Donations as of September 22, 2014:

$0.00 Raised Offline
$15,670.00 Raised Online
$15,670.00 Total Raised

The Fabrys Walkabout

 

The Fabrys Walkabout

 

“Where there is charity and wisdom, there is neither fear nor ignorance.”
St. Francis of Assisi

 

My name is Courtnay Midkiff.
I am 23 years old and I suffer from an illness called Fabry Disease. What is Fabry Disease (Fabrys)? Fabrys is a very rare genetic disorder found in only 1 in 40,000-to-60,000 males. Classified as a Lysosomal Storage disease, Fabrys is a defect in a gene that causes a deficient quantity of an enzyme. This enzyme is necessary for the daily breakdown of a lipid (fatty substance) in the body. When proper metabolism of this lipid does not occur, it accumulates in the majority of cells throughout the body. The resulting progressive lipid accumulation leads to cell damage, which causes a wide array of symptoms. These symptoms range from the inability to sweat, stomach problems, fatigue and chronic pain in the fingers and toes, to severe symptoms, including potentially life-threatening impacts such as kidney failure, heart attacks and strokes (which my brother, who also suffers from Fabrys, experienced in November, 2011, at the age of 26).

Fabrys can affect males and females of all ethnic and cultural backgrounds. Because of the progressive, destructive and potentially life-threatening nature of Fabrys, early identification, evaluation and diagnosis are critical to the health and well-being of individuals with this disease.

There is a treatment for Fabrys, but currently no cure. The treatment now is most commonly administered every two weeks by an infusion of a synthetic enzyme to replace the one Fabrys sufferer’s bodies don’t produce. The treatment is very expensive, costing about $265,000 a year. As you can imagine it is very difficult for people to afford such a treatment, so many people go without, causing their health to deteriorate over time, as the disease is progressive without the treatments.

On March 1st, 2013 I will embark on a backpacking trip from coast-to-coast. I am taking this on with the sole purpose of raising awareness of this little known and chronic disease, and hope to raise $1,000,000 to support a great organization that helps people like me, The National Fabrys Disease Foundation (“NFDF”).

The NFDF is dedicated to supporting the Fabrys community. Their five primary functions are: assisting with Fabry disease education, facilitating Fabry disease identification to improve Fabrys recognition and diagnosis, providing various forms of assistance to individuals with Fabry disease, supporting Fabry disease research and promoting advocacy for Fabry disease issues.

This backpacking trip will, I believe, provide dual benefits, both of which would be positive for the Fabrys community. On one hand, I intend to raise money to help further research and development of treatment; and on the other hand, I expect to give those diagnosed hope, by showing that just because we have Fabrys, doesn’t mean we can’t be as active as anyone else.

Living with Fabrys has made me a stronger person and taught me to never give up or quit anything. Even with the chronic pains in my hands and feet, I’ve had a very active life thus far: I am an Eagle Scout, I love camping and hiking and all sorts of adventures. I also like biking, swimming, surfing, rock climbing and cliff jumping. No matter what condition I am in I will always explore, travel and be adventurous.

My trip will start on March 1st from Virginia Beach and I will be walking through 10 states and nearly 3000 miles of the United States to the Pacific Ocean in California. I will document the entire trip with pictures and videos, and update a website/blog with a weekly video. I will carry cameras and a laptop to view and edit the website and videos from the road. I will be showing my progress on the walk, and the sites I stop in. Im going to be sleeping in tent and sleeping bag and making my own meals for most of the trip, so I am anticipating an interesting and exciting journey.

This trip will be far from free. With the cost of food and gear, I’m hopeful that I can get sponsors to help cover the cost of these items, as well as pledges to be made to the NFDF so they can continue their life saving research and expand the support they provide to those of us who suffer from Fabrys. All contributors will have the benefit of being a part of something that will potentially save lives, as well as being recognized and thanked in all of my updates(tweets,blog entries,videos).

With your help, I can make this possible. With great support, there can only be a great outcome!

Thank you for your time and I hope I can count on you for support in this great venture, for a very worthy cause.

 

Supporters

Comment Donation
John and Rhoda Mahoney Congratulations, Courtnay! Way to go!
$100.00
Andy Kleinschmidt Awesome job Courtnay! Congratulations to you and to National Fabry Disease Foundation.
$100.00
Jenna Harris & her mom and dad Jenna told us your story and we were all so inspired by your journey and dedication!!
$100.00
The Gottwald Family Congratulations from all the Gottwalds on your amazing walk. You make us, and all your Troop 400 friends, proud!!!
$2,500.00
Bruce Cauthen Congratulations, Courtnay! Thank you for investing so much of your time and energy into such a noble cause.
$25.00
Amy Fees So proud of you Courtnay!!!
$50.00
Down To Nothing - Life on the James Congrats Courtnay, see you on the 21st!
$400.00
Randall and Lissa Eske Thank you Courtnay for your amazing sacrifice for our cause.
$50.00
Jim Brown
$100.00
Isabella /wagk Courtnay, you're our hero! Congratulations on your epic adventure.
$40.00
Anonymous
$25.00
Yancey Happy birthday and congratulations! You made it! Swim all day and can't wait to see you back in richmond in a couple weeks!
$30.00
Meredith Congrats on the coolest thing anyone has ever done!!
$100.00
Anonymous Courtnay is an amazing young man. I thank him for raising awareness of this disease. May God bless Courtnay and all those with Fabry's.
$200.00
Anonymous
$200.00
Phil D and Christine Almost there buddy!!!
$100.00
Daniel Spector You're the man.
$100.00
Mary Ann McLean I've been praying for you all these months. I knew you would make it. You are a truly amazing person. God love you!!
$100.00
Jake and Betty Cordell In memory of Craigg Cordell. Courtnay, we love you and pray for you every day. Thank you for making so many aware of Fabrys.
$250.00
Tommy, Tracy, and Ty Myatt In memory of Craigg Cordell. We are so proud of what you have accomplished, Courtnay!
$100.00
George Jennison
$500.00
Sherry Tranchemontagne
$125.00
Julie Mabie
$100.00
Julie Gallagher
$50.00
Ted & Jackie Spitz Craigs dad. Glad he was able to check on you for 100 miles+ of desert walk and keep you in water.
$100.00
Donald Silverman Wishing Courtney continued success to the finish line!
$50.00
Eddie Eastabrooks
$25.00
Patrick Hogan
$25.00
Brad W. Congratulations Court. You are the man.
$1,000.00
Tess Steinkolk Good luck, Courtnay!
$25.00
Joe
$581.00
Joey and Jeanne Wallace We would love to meet you when you get back to Virginia.
$20.00
The Mandels You are awesome!
$20.00
Anonymous Well done!
$250.00
Lillian Vitalo
$50.00
Hatebreed
$300.00
Tim Back
$40.00
Mitts Madball You're insane! haha
$40.00
Nate and Liz Newton Keep it up!
$25.00
Steve and Diane Rothman Keep up the Good Work!
$50.00
Eve Rubell and Jose Bergero
$25.00
R. Gerald Smith Courtnay, thank you for you selfless gift. You are an inspiration and rolemodel for us all. R. Gerald Smith
$15.00
Andy Kleinschmidt Thank you for raising awareness Courtnay!
$50.00
Frances F. Goldman Friend of Kevin Ball, a huge supporter of you!
$75.00
Yvette Lounsbury Proud of you!
$50.00
Brad
$20.00
Chuck Good luck, Courtnay.
$50.00
Family of Lily Butterick We admire and support your efforts!!!
$100.00
kshaw
$40.00
Tad
$50.00

Donation Summary

Raised Offline
$0
Raised Online
$15,670
Total Raised
$15,670
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