NORD

After school ending I had a week off, but boy was it a busy week.  My mom and I had the opportunity to meet a young lady my age with HoFH. This is the first time I have ever met someone my age with the same disease. Yup, eighteen years later and finally one of my biggest dreams have come true. Amanda is 21 and goes to college in Pennsylvania. We had talk for quiet a few months as we both just started this new medication and we wanted to share tips and tricks with each other  We talked for a little while but most of the time I was busy thinking about the surprise that was about to happen. Our schedule was pretty well booked for the two days we were there but little did everyone I had a surprise. A surprise many months in the making and a surprise that no one saw coming.

I have been a part of The FH Foundation from its inception and I thought the best way to say thank you to the founder Katherine Wilemon for everything she has done for me was to give her a handmade quilt. The day before I was to fly out to Washington DC we had a conference call and we scheduled lunch with the free time that we had. We met her at her hotel a few miles away and in the lobby I pulled the quilt out of my backpack and handed it to her. After a few tears and some hugs I gave her surprise part two…. A poem written by me. Sometimes a simple thank you just won’t cut it.

After lunch with Katherine and the surprise I had the awesome privilege of speaking in front of hundreds of people in our nation’s capital and sharing with them my gratitude towards Aegerion Pharmacuticals and all they have done for the FH community. At the beginning of last year Aegerion’s first drug passed through the FDA and hit the market in the first quarter of this year. It was the first drug to come out for HoFH patients in a long time. They have given me the opportunity to share my story with people all over and help raise awareness for this disease that affects only 1/1000000 people. 

After barely eating anything because NORD decided duck was a good option, I went up on stage with a bite of a sub and a piece of bread in my stomach. I get so nervous before I speak in front of any group of people no matter how large or small. It doesn't matter that I have done it for almost two years now, every time I step on stage or sit down in front of a group of people and talk I physically become ill. No I don’t throw up on everyone as I think after a few time they would stop calling me back if that were the case, but I do start to sweat really bad and get very weak in the legs. It never makes it any better when people say beforehand “you’re going to do great.” Anyways after waiting for what seemed like eternity they called me up to the stage, (I had my speak on the TelePrompter just like the one the president uses.) and after a short thank you and brief history on myself I presented Craig Fraser, the president of Aegerion, with the award.  PHU… it was over. We got a few pictures and did a brief video interview and the night was done.

As I look back at the little time i have been with Aegerion, I can’t say enough about how much fun it has been to get out there and make a difference. I enjoy reflecting on the past ventures I have taken and look forward to the many ahead