Delaware HOSA Hosts Rare Disease Day Event

Updated (3/7/2017)

Nemours Hosts 3rd Annual Rare Disease Day

Nemours/Alfred I. duPont Hospital for Children (N/AIDHC) and Delaware HOSA-Future Health Professionals co-sponsored the 3rd Annual Rare Disease Day Student Research Event, Tuesday, February 28. This competitive event aims to encourage student engagement and to support policies and practices that facilitate research, encourage innovation, and advance awareness and understanding of rare diseases. Working with this year's theme "With research, possibilities are limitless," student teams from Delaware schools prepared a visual display about a rare disease, their research efforts, and a proposed cure/treatment or way to improve the quality of life related to the condition. See local clip from ABC News.

The event was kicked off by Heidi Kecskemethy, Director, Office of Nemours Research Education Programs, and Dr. Peg Enslen, HOSA State Advisor. The presentations were judged by four of our distinguished associates, Dr. Vicky Funanage, Operational Vice President for Research; Jane Mericle, Operational Vice President and Chief Nurse Executive; Dr. Melissa Alderfer, Senior Research Scientist in the Center for Healthcare Delivery Science; and Dr. Grace Hobson, Principal Research Scientist Emeritus. "The presentations were outstanding, and the students, the student advisors and their schools are to be commended for their passion and commitment to raising awareness of pediatric rare diseases," commented Dr. Funanage. After final calculations, the winners are:

1st place: Newark Charter Schools Shu-Jin Kust and Tanvi Venkatesh for their presentation on Marfan Syndrome. Thank you to their mentors Dr. Nina-Powell Hamilton, Geneticist and Kristi Fitzgerald, MS, LCGC, Genetic Counselor for Cardiology.

2nd place:  Hodgson Vocational Technical High Schools Jessyca Flores and Tayla Wibecan and their presentation on Ebstein’s Anomaly. Thank you to mentors Dr. Christian Pizarro, Director of Nemours Cardiac Center and Christine Martinenza, RN, BSN, CCRN, Cardiac Intensive Care Unit

3rd place:  POLYTECH High Schools Yasmine Awayes and Suella Cooke with their presentation of Klippel-Feil Syndrome. Thank you to mentors Dr. Suken Shah, Orthopedics and Colleen Ditro, DNP, CPNP, Orthopedics.

The students raised an astounding total of $3,117 for rare disease research at Nemours! Newark Charter School not only took home 1st place for their presentation on Marfan Syndrome, but also took home the Philanthropy award, having raised $1,437 for the event.  

The high schools participating this year included: Appoquinimink High School; Cape Henlopen High School; Conrad School of Sciences; Delcastle Technical High School; Dover High School; Hodgson Vocational; Technical High School; Newark Charter School; POLYTECH High School; Sussex Central High School; William Penn High School; and Woodbridge High School.

HOSA also presented Nemours with an award which was accepted by Terry Pedicone, Research Administration, and Organizer of the Rare Disease Day Student Research Event.


 


Original Article (2/9/2017)

Since 2015 Delaware HOSA has partnered with Nemours for an annual Rare and Chronic Disease Research Event in conjunction with Rare Disease Day. National Rare Disease Day is always the last day of February each year.  The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives. The event engages and involves HOSA members in science, research & STEM-related careers through education, mentorship, and hands-on experience, to help guide the future health professionals.  

The event's planning committee identified 20 rare diseases that they treat or do some type of research on at Nemours. Delaware HOSA members (teams of 2) select one of the diseases to research and create a visual display to describe the disease and propose at least one area of research for possible future exploration.  For 2017, twelve schools signed up to participate. The diseases selected are: Klinefelter Syndrome, Skeletal Dysplasia, Marfan Syndrome, Maple Syrup Urine Disease, Klippel Feil Syndrome, Juvenile Rheumatoid Arthritis, Ebstein’s Anomaly, Acute Myeloid Leukemia, Turner Syndrome, Familial Hypercholesterolemia, Denys-Drash Syndrome and Congenital Myotonic Dystrophy.

Nemours has identified a nurse/genetic counselor/clinician, a researcher, and patient/family for each of the above diseases. HOSA members will develop a visual display describing the disease and be judged (by a panel of 4 judges) on their ability to present themselves, communicate the rare disease information to others, as well as propose a possible cure/treatment or quality of life measure. They will also compete for a separate prize in philanthropy efforts for raising funds for rare disease research at Nemours.  The displays will be set up in the Atrium of the Alfred I. duPont Hospital for Children on Tuesday, February 28, 2017 from 9:30 am – 2 pm. Awards will be given to the top 3 teams, in addition to the team that raised the most funds.  Learn more