Tricia Dennis is the founder of We Are R.A.R.E, a non-profit organization established in 2011 to provide research, awareness, and education on neurological disorders. The group is made up of parents, children, family members, medical and legal advisers and others, most of whom are affected by these disorders. They in part seek to provide one another with education, support, and resources to help face such disabilities. They also aim to establish the research needed to understand and prevent these debilitating disorders. All members of the organization are volunteers who spend their time advocating for equal rights through global and national inclusion.
Tricia’s son Noah has a rare brain disorder called Schizencephaly, also known as Split Brain disorder, which effects about 1 out of 64,935 people in the United States. This condition is a result of clefts that form in one or both sides of the brain, which are formed during early weeks of pregnancy. Noah’s condition was a result of a stroke he had before he was born, meaning he was unable to ever walk or talk. Despite this, he golfed and swam during many of his summers. After participating in these activities he started to talk, which encouraged his family to continue and expand his participation in sports. His next endeavor took him into running, where he has participated in many races.
Noah has been part of several races during the recent months, ranging from 10ks to full marathons. Runners from across the country have stepped forward to team with Noah during these races, pushing him through the courses. Many fly in from different cities where they live to be with Noah in races closer to his home in Florida. So far, he has run in races such as the half marathon and 10k in Atlanta. Earlier this year, he was invited to also take part in the United States Marine Corps Marathon in Arlington, Virginia on October 28th. A woman offered to fly into Virginia to run with Noah during what was her first marathon. However when Noah’s family was about to drive up to Virginia, they ran into some troubles with their car. Luckily MobilityWorks of Orlando was able to set them up with a rental car for the weekend. They were able to make the race and had an incredible time during the entire experience. Noah and his brother were also able to explore the city of DC, as well as the mountains surrounding the area.
A major problem that Tricia has found when finding races for her son to participate in is the level of inclusion given to athletes in wheelchairs. She points out that most courses exclude chaired participants, or otherwise consider them exhibitionists. Due to certain hills or inclines, many courses do not let chaired athletes participate in their races. Others allow them to only participate as exhibitionists. Tricia is fighting for courses to allow athletes to participate at their discretion, as they are the ones who know their limits best.
During the upcoming year, Tricia and Noah have a lot to look forward to. They are working on a documentary to talk about Noah’s story and bring to light the exclusions that he faces. He is scheduled to partake in several more races, including the Miami Marathon on the 27th of January. They are also putting together their own race, a result of teamwork between We Are R.A.R.E and other foundations in Florida. They wanted to create a race to raise awareness of the importance of inclusion and the importance of social interactions for members of the disabled community. Their race will be held on October 5th and currently has participants including 15 chaired veterans, as well as other athletes who have felt and understand such exclusion. We are proud to have been able to help their family and wish them success during the upcoming year.