In 1994, the first Hydrocephalus Association scholarship fund was established by founding members Russell and Emily Fudge in memory of their son, Gerard. Our scholarship program is now able to offer nine scholarships annually to young adults with hydrocephalus. As part of our interview series in commemoration of our 30th anniversary, our intern, Jessica Ford, sits down with Elizabeth Ann Norris, to talk about growing up with hydrocephalus and her thoughts on the Hydrocephalus Association. Elizabeth currently attends Lenoir-Rhyne University and will graduate this year with a major in Human and Community Service. She was the 2012 recipient of the Mario J. Tocco Hydrocephalus Foundation scholarship.
HA: How has HA made an impact on your life?
ELIZABETH: HA has been a valuable resource for me and my parents. It has been a valuable resource for my parents when limited information was out there. It provided educational information, support, a sense of a hydro community, as well as the opportunity to attend sections of the national conference. For myself, it has provided education for research. By attending HA’s WALKS, support groups, and the national conference, I have also been able to connect with other people who have hydrocephalus. Additionally, I am very thankful for the scholarship that I received this past academic year.
HA: What is your favorite HA memory?
ELIZABETH: All of the HA WALKs are memorable to me. Before I attended the WALKS, I felt as though no one knew what hydrocephalus was. Attending the WALK was the first time I could say “hydrocephalus” and no one would run and hide.
HA: Of all the work that HA does for the community, what do you think is the most important or impactful?
ELIZABETH: I think HA’s online resource library that is very beneficial. When someone asks me a question about hydrocephalus I think, “Let me go look in the Resource Library.” Additionally, I think the all education materials are extremely important: the storybooks for the children, the booklets for teachers, the booklets for parents, etc. The most impactful work HA does is its push to find a cure. The excitement HA has for pushing that initiative is very exciting and powerful.
HA: What else would you like to see HA do?
ELIZABETH: I would like to see HA get more education materials into the hands of neurosurgeons. I have been in situations where someone who is affected by hydrocephalus gets connected to me because they do not know anything about hydrocephalus. These families had already talked to their neurosurgeons, and no one had given them any information.
Additionally, I would like HA to create more awareness promotional items such as cups, pins and key chains. I think it would be beneficial to spread awareness of hydrocephalus using these materials.
HA: What message do you have for people your age living with hydrocephalus?
ELIZABETH: Be yourself, and do not let hydrocephalus define who you are.
HA: What message do you have for the general public?
ELIZABETH: Realize that just like everyone else, people with hydrocephalus have a wide variety of skills, talents and personalities. Don’t assume that because someone has hydrocephalus that they are incapable of doing something. Like any other condition or disability, there is always a wide variety of ways someone can be affected.
HA: What are the biggest challenges you overcame as a result of hydrocephalus?
ELIZABETH: Fortunately, I haven’t had many complications from hydrocephalus. I was diagnosed at 4 weeks old, and I have had six surgeries. I want to be an advocate for myself and others, especially for those who do not have a voice that can be heard. I try not to step on everyone’s toes, but I spread awareness of hydrocephalus wherever I go. I make connections with people all of the time and share my story. A lot of times people are surprised to have met someone else who knows something about hydrocephalus. There is a major challenge of getting people to not be afraid of talking about hydrocephalus.
HA: What do you consider to be your greatest accomplishment thus far?
ELIZABETH: I am about to graduate college, which I think is a huge accomplishment. But another accomplishment I am proud of is my high school senior project. We were required to create a product, write a paper, and give a presentation in front of a panel of judges. What I did for my senior project was larger than anything my former classmates had ever tried: I planned the fundraiser WALK for the Hydrocephalus Association. At the age of 18, I was the youngest person who had ever planned a WALK. It was in my hometown. Because it was a senior project, I could not use any of the materials HA already had. I made all of the materials myself. We raised $6,700 dollars, which exceeded my initial goal of $5,000. We also had 80 walkers, which I am rejoicing for. As with any event, I had to overcome some challenges. It rained the night before so we had to move the location of the WALK at the last minute to accommodate a rescheduled football game. But overall it was a huge accomplishment for me because I proved to myself that I can do anything I set my mind to. It was incredible!
HA: What message do you have for the staff of HA?
ELIZABETH: Thank you for all the work that gets done, for adhering to your mission, and for helping everyone in the hydrocephalus community.
HA: What message do you have for the board of HA?
ELIZABETH: For the board, I also say thank you! In 1997 (1998?), my mother attending a national conference where HA discussed its goals and its mission. These goals have stayed the same. Continuing the common goals and promoting education and awareness should continue.
HA: What message do you have for the founding members of HA?
ELIZABETH: Thank you! Without you, we would be lost. You rock!