People
OF RARE
Quarterly Reflections
Quarter one:
I found selecting my topic of rare diseases very easy and I am confident rare diseases was the right choice for my year long project because it relates to my everyday life. In order to secure a mentor, I went through multiple people to find the perfect one. My mentor is Randy Hart who has known me since I was a child. I feel she is the best fit to help me with this project because she is also a part of Congenital Hyperinsulinism International and has experience in planning fundraising events. During the second quarter I plan on finishing my website and publishing it to start collecting donations.
Quarter two:
As I researched for my paper I found that though certain populations had a higher frequency of a specific rare disease, those affected still faced adversity when looking for resources and treatments. I have been in contact with my mentor over the phone and in person in early February. She has provided me with various materials such as pamphlets, drawstring backpacks and bracelets from Congenital Hyperinsulinism International to hand out at my event.
For quarter three I must finalize my presentation and divide the profits to each organization after my event and send the checks to the respective organizations.
Quarter three:
Over this year my project has definitely grown larger than I ever expected. I had a spotlight article in the Westerly Sun about my rare disease and my project. At my actual event, one of my guest speakers live tweeted my event and helped put together an amazing video collage of my event. I also attended a Congenital Hyperinsulinism Conference in Philadelphia April 16-17 where I was able to speak about my event and present the check to the president of the foundation.
For my presentation I will share the video collage as well as use some of the posters and materials I had at my event.
Over the course of this year I have hit some roadblocks. I originally started out with four guest speakers, including myself from the New England area, but about a week before my event two guest speakers told me they were not able to make it. However I was able to find two more amazing guest speakers from right here in Westerly.