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My First Video Blog =)



Made it to Taiwn =] it's a beautiful country.. 



I encourage everyone to write to the peloton people to fast track this drug. #CUREVHL 

My First Video Vlog

PT2977 UPDATE

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A Glimmer of Hope by Justin

I clearly remember the day I got the news I had Von Hippel Lindau (VHL). Both my brother Josh and I were both diagnosed with this disorder when the genetic testing came back. I was six years old and Josh was ten. We were both far too young to understand what it meant, but we would soon learn how it would change our lives. Though, we eventually found that the real journey for both of us started later in life -- when it really started to affect us. As kids, we had no clue what that meant for us, as it turned out, the rough road ahead was just the beginning. We both faced hard situations and have overcome different types of cancer and many surgeries. Dad was a big influence in both of our lives. Seeing him go through all those dangerous surgeries, year after year, gave us the fighting attitude we needed to get by in a life like ours. Unfortunately, that didn’t really make it any easier. I’m not sure what a “normal’ childhood looks like, but my entire youth revolved around seeing...
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First impression of Taiwan

I'm happy with the decision that I chose Taiwan as my first place to travel internationally.  It's really a beautiful country. Everyone in Taiwan is so polite and the food is hella bomb! Omg the food! 😋 I could go on and on about the food. If I had to describe the food in one word it would be phenomenal. Dumplings and milk tea/bubble tea are my favorite things I have had so far. I feel safer here than at home, which is sad. I have never once felt unsafe in Taiwan. Even when I was walking in alleyways at 3am. It's just a very safe country. America is lacking and you always have to worry about getting shot. It's ridiculous to feel safer outside your own country.  The only thing you have to worry about is the scooters and cars hitting you on the streets. No one follows the traffic rules in this country. Today, my Uber actually got rear ended lol. Good reminder to wear a seat belt kids! I was even on the sid...
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PT2977 - Clinical Trial Update - One Year Mark.

I thought I would do a quick update for everyone and also document my journey on this trial drug from now on. This is something I should have been doing since day one.  Better Late Than Never... Lately i have been fatigued and a bit depressed. I'm assuming this is part of the fatigue side effect of the trial drug. So far this medicine has improved my overall quality of life and is keeping the tumor growth at bay. The gamble i made a year ago paid off. The only thing I am worried about so far is the vision issues. I did not have the best vision before I started this drug, but it's a bit worse after starting it. The docs are saying it's muscle fatigue of the eye which is causing my astigmatism to be worse. I do notice vision issues are worse when I am tired and driving at night as well. Traveling every 3 months since January of last year has been draining, but in the long run it is helping me, and hopefully it will bring us closer to a medication that will control VHL...
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