EDS students and faculty have the opportunity to display support and awareness for Rare Disease Day by participating in a dress down day on Thursday, February 20th.
Rare Disease Day was launched in 2008 and has become an international awareness day for those who live with rare diseases. In the USA, a rare disease is defined as one that affects fewer than 200,000 Americans at any given time. Eighty percent of rare diseases have identified genetic causes and the others are caused by either viral or bacterial infections. Fifty percent of rare diseases touch children.
The subject of rare disease is near and dear to the hearts of the EDS community. Frances Brown, daughter of Ashley and John Clark Brown and niece of Christian and Sutton Stracke, was diagnosed with Macrocephaly-capillary malformation (M-CM), a multiple malformation syndrome causing abnormal body and head overgrowth and abnormalities of the skin, vascular system, brain and limbs. Frances is a classmate and close friend to Anne Allston Weston who also lives with a rare disease. Anne Allston, sister of two EDS students, has 22q11 deletion, a genetic disorder that has the potential to affect almost every system in the body and cause a wide range of health problems. Frances and Anne Allston have had 18 and 9 surgeries, respectively, to date and both attend 4+ therapies every single week. The Brown and Weston families are certainly aware of the challenges faced with having special needs and strive to promote awareness and education of others who are unfamiliar.
Three years ago, I ran my first race under a team I created in honor of a precious little girl who was dealing with far more than a couple of hours of physical exertion to reach a finish line. The team was created to promote awareness for children like Frances who live with rare diseases or special needs. That team is known as “Friends of Frances”. I had a goal to finish a half marathon, an obstacle that is nothing compared to what Frances and Anne Allston have overcome in the past 7 years. On February 23, the Friends of Frances team will run the GRU Half Marathon / 10K. The team has become more than just runners, Friends of Frances has become a group of people that recognize children with special needs and the challenges they face with every day life.
The most rewarding result of Friends of Frances has been to see children recognizing those with rare diseases and viewing them as normal people with special needs.
St. Mary on the Hill and Lake Forest Hills Elementary will join EDS in promoting awareness for rare diseases of childhood by having a Friends of Frances day at each school. Money raised from the Friends of Frances dress down day will go towards a donation made to the Children’s Hospital of Georgia in honor of those with rare diseases.
Show your support for an under-recognized cause on February 20th by dressing down. Wear green or a Friends of Frances t-shirt! Anyone interested in purchasing a t-shirt to be worn on February 20th should email me at email@example.com.
I hope that this day will raise awareness and acceptance among differences in our children. I thank you for helping plant the seed of awareness in each little mind at EDS and fostering an understanding of what it means to be a normal person with special needs.