BENEFITING: NATIONAL HEMOPHILIA FOUNDATION
My name is Michelle Cecil and I was diagnosed with Von Willebrands Disease at birth. I know, it sounds like some sci-fi horrific disease that I am going to die of. But really VWD is a genetic bleeding disorder where my clots don't hold very well because I have a lower factor level than the average person. As this is a genetic disorder, I had a 50% chance of receiving it when I was born, not only did I get that lucky 50, but so did my twin sister, younger sister, half brother, and mom. Having this disorder does not mean that I am going to die; I do however have some symptoms that occur on a regular basis. Ranging from gum bleeding, to heavy periods, to spontaneous bloody noses, to bruises that come out of thin air.
I know that this all sounds bad, but it really isn't. At a young age I started to go out with my mom to local fairs, malls, and events, to speak with women about what bleeding disorders were, and what the common symptoms were. See, VWD is the most common bleeding disorder affecting 1-2% of the population, but most people are undiagnosed. So our goal was to get the word out about what the heck a bleeding disorder was, what the common symptoms were, and why people should care. Little did I know that as a six-year-old child, I was advocating. As I grew into a teenager and a young adult, my passion for advocating blossomed and grew, as did my passion for the bleeding disorders community.
The summer before my senior year in High School the opportunity was presented for me to apply to the National Youth Leadership Institute, a program for young adults 18-23 with bleeding disorders, to become leaders, advocates, and teachers in the bleeding disorders community. As someone who has been actively involved in this community since I was six, I jumped at this incredible opportunity. Lucky for me, they liked me and I attended my first NHF Annual Meeting as a NYLIer in 2010 in New Orleans, Louisiana.
Since then I have attended Annual meeting in New Orleans, Lousiana (2010), Chicago, Illinois (2011), and will be attending Annual in Orlando Florida in November of this upcoming year. I have also had the opportunity to attend Washington Days in Washington DC, twice. At Washington Days we advocate to our state representatives and senators on legislation that is impactful (in both positive and negative ways) to the bleeding disorders community. I have had the opportunity to meet Senator Herb Kohl, Representative Paul Ryan (current VP candidate), former Governor Tommy Thompson, Senator Ron Johnson, and so many others. I have also had the opportunity go to the Hemophilia camp in Pennsylvania, and put on the NYLI initiative, Youth Fit. I have also helped my local Hemophilia organization by running a program at our state annual meeting. I ran a Women’s Panel Discussion, my goal was to present a program where women can get information they need about what is going to happen in their lives, as a woman with a bleeding disorder :).
So as you can see, NYLI has provided me with incredible opportunities to grow as a leader, a bleeder, and a overall person. That is why I would like to raise $500, before Annual Meeting on November 7th. I want to give back to a program that has also given me so much. For a general program description of NYLI please go to …