By Kari Hartmann
HDSA-San Diego Intern
I am twenty years old and from a small suburb of Detroit, Michigan. Huntington’s disease has been an integral part of my life ever since I can remember.
Growing up watching my father fight for his life, I always knew I wanted to do something to help give back to him. In 2007, the year I graduated high school, my father passed away from Huntington’s disease. After spending nearly the first two years of my college education studying pre-law, I soon realized I was in no way ‘giving back’ to my father.
I began looking into other career options during the same time I was seriously considering being tested for Huntington’s disease. Since my father was affected with HD, my younger brother and I both have a 50/50 chance of inheriting the fatal disease. The contemplation of testing for HD has been an ongoing battle for me for many years now.
One day, the fact that I wanted to work with the Huntington’s Disease Society of America (HDSA) clicked. I began learning all I could about career opportunities within HDSA.
In 2007 and 2008, I participated in the Race Across America (RAAM), supporting Team 2 Cure HD of the San Diego chapter of HDSA as they biked across the country. The team was created by my cousin Sharon Shaffer’s husband Renato in 2006.
Sharon tested positive for HD, and their two beautiful daughters are at risk. After learning all of the hard work and dedication that goes into planning an event such as RAAM – just one of several fundraisers of HDSA-San Diego – I decided that one day I would work to help plan fundraisers and events within the Huntington’s disease community.
As a result, I am currently living in Chula Vista, California, completing an internship. My job is to help plan this year’s RAAM and the fundraisers leading up to it.
I arrived in California on February 6 and will live here until June 12, when our team will leave Oceanside, California, to begin our fourth RAAM.
After completing the race in Annapolis, Maryland, I will return to Michigan. However, I know that I will leave this experience with new-found knowledge and experience that will help me both inside the workplace and in my personal life.
I plan on finishing school, and one day I hope I will have an opportunity to work for HDSA as a special events coordinator.
Since arriving in sunny California, I have been busy doing my best in spreading awareness about Huntington’s disease. I am working hard to contact local restaurants, stores, and businesses to sponsor Team 2 Cure HD, as well as to donate food, drinks, and raffle prizes for our third annual golf tournament on April 30.
It is amazing to me that I have only been here for three weeks and have had so many opportunities that are not available to me in Michigan. Besides working closely with Sharon and HDSA-San Diego events coordinator Stephanie Alband to plan the golf tournament and our upcoming race, I have had the opportunity to meet many other people just like myself who have an HD background and potential future with the disease.
Recently I attended an HD support group. I was able to meet many people of all ages affected or at risk for Huntington’s disease. I have always had an interest in connecting with people, especially those my own age, who have already been tested or are considering being tested. I enjoyed it so much that I plan on attending the next meeting!
Overall, my experience in San Diego has already broadened my knowledge in terms of what it takes to create a successful event and fundraiser. I have learned many new techniques of speaking with potential sponsors as well as writing letters of request to restaurants and businesses.
I look up to those committed to working with the HDSA and making a difference in the lives of all HD families. Outside of my actual internship, I have been able to spend time with my family – the Shaffers – and learn more about myself in terms of who I am, the woman I want to be, and my own personal choices regarding testing for Huntington’s.
This opportunity would not have been possible without Stephanie and Natalie Carpenter of HDSA-San Diego, my wonderful family in Chula Vista, and my supportive family back home in Michigan. I will be forever grateful to all of them for this eye-opening experience. I know I will return home with the motivation and strive to graduate from college and begin working on my lifetime goal of promoting awareness about Huntington’s disease in hopes of one day finding a cure.