September 29, 2018 @ 9:00AM — 11:00AM
The Rubayo walk/fund raiser for Wilson's Disease. If you can't attend, please consider a donation using the green button below.
Purchase a ticket to have your name appear on our attendees list
Note: Because our baby girl Lucía will be born around the same day as the actual Big WOW official date, we will not be able to have an actual Walk, but it would be invaluable for us if you are able to buy a t-shirt/cap and proudly wear it on Sept 29th, or make a donation to the Wilson Disease Association. Make sure to take and send us some pictures! We are raising money for the Patient Registry that will ultimately help all Wilson Disease patients including those close to us and all of it is tax deductible.
Note to the note: The address for a park is fictitious because of one of those silly, techy issues that won't publish the page without something in the blank.
If you want to donate you can do so in the right hand side of this page.
If you want to order shirts or caps you can use the link below and your orders will be shipped to you directly.
Why do we do this?
My story is, honestly, one of pure luck. My name is Daniel and in the picture you can see my wife Melissa and I. We got married in June of 2017 and we're now expecting our first daughter Lucía María. So why luck? See, I was diagnosed with Wilson's disease in 2012, when I was 22 years old, going through my second year of dental school in Puerto Rico. I had no symptoms... none whatsoever, and I had lived a life without worry, eating EVERYTHING that as a WD patient I should avoid, multiple times a day, multiple days a week. So you may ask yourself, why did I get a test for WD? Well, that other story started about a year earlier when my younger sister was rushed to the ER because she had fainted and had an itchy head. She wasn't diagnosed with WD until like about 4-5 months later. Needless to say, with all the strange symptoms she had, at some point my mother thought we were going to loose her. After the diagnosis, she took penicillamine for some time and got so much better so quick, it was like a miracle. She is now in Zinc therapy. Me? I went straight to Zinc, 3 times a day, had to stop eating a couple of foods and get labs every once in a while. She often reminds me that I owe her my life, and I kind of do haha. We're both pretty healthy individuals and live quite a normal life so far. Having WD never really impacted me much, I was able to adapt quickly and easily to everything the doctors recommended. It wasn't really until 2015 when I went to the WDA Annual Conference that I realized how lucky I really was, and it was an experience that marked me. I met people that were having to deal with much much worse things than taking a pill 3 times a day. I'd lie to you if I told you that I was able to hold my tears back. It was really tough to imagine myself in their shoes. My life, as I know it, would've been upside down if I had some of the symptoms that I saw manifested in some at the meeting. For example, I've chosen a profession that requires fine motor skills and steady hands. Practicing dentistry would've been impossible, and after so many years of education and sacrifice, that would've been just a little bit frustrating. Then I decided to help, however I could. With my busy schedule and ongoing education, I decided to enroll myself as a support contact for the WDA, that was the least I could do. To my surprise I have received emails and calls from people seeking help and guidance, and I have done my best to provide them, and it's been very gratifying. Since then, I haven't done much more than that. This year I'm trying the Big WOW because I believe it's something small for me to do that could do some good for the Wilson's Disease Association and all of its members, the research they support and all of the patients that need the WDA to continue doing what it's doing for years to come.
The Wilson Disease Association is a 501(c)(3) nonprofit corporation designated by the IRS. All donations are tax deductible and are being used exclusively to fund the patient registry. Donations can be made on our website at www.wilsondisease.org or in the right hand column.
You can support us by making a donation!