My name is Manuel and I have VHL. In my case, it’s pretty bad in the brain. No matter how hard I wish for it to stop developing tumors, every time I have a surgery they keep on coming back. So far I already had 15 brain surgeries (and yes, also spinal, kidney and eyes treatments.. you know, it’s VHL!). Please watch my story in the video above as featured in the Columbia Neurosurgery website.
The only rational thing I can do is to hope that one day a magic pill will surface the market so it will make it go away. But I am a #VHLWARRIOR, and hoping doesn’t cut it. I have to do something about it. And since I am not a researcher, the only rational thing to do is to raise funds, in order to help people that do that research find it for me (so that I can take it and put the VHL problem to rest).
It is mainly for this reason that I decided, with the help of family, friends and fellow VHLA Board members, to start an annual fundraising dinner in NYC where I currently live. I am extremely fortunate to work in the financial industry and to have many friends and colleagues, so I have been able to raise a lot of money, also because NYC is the city where the money is! The first gala raised almost $150,000 – with that money, VHLA funded two exciting new projects at University of Harvard and Tel Aviv. The second raised over $300,000, which will go to fund even more new research. A NYC gala 2017 is already in the works!
So, my fellow VHLA friends, please join me in this quest and start raise money. No matter how small or large you are able to raise, no matter the type and scale of event you are able to organize, know that you are doing so to increase your chances to live longer! We need to be optimistic and think that it will be any day now!