Projects promoting Project Alive are sweeping through the school; students old and new have heard of the story of the son of English teacher Jennifer Estevez, Sebastian Estevez who has the terminal Hunter’s Syndrome. Before hearing Sebastian’s story, not many people knew about Hunter’s Syndrome. In order to raise awareness and money for this and other rare diseases, freshmen Alyssa Arias and Dani Elzweig teamed with Mrs. Estevez to create the club “A Care for the Rare.”
In A Care for the Rare, members work to promote awareness of rare diseases.
“We are committed to advocating for patients who have been given little hope for a cure because there is not enough funding for diseases that only affect a small population,” Arias said. During meetings, the founders keep their members up to date in the world of uncommon illnesses. “We talk about upcoming events and watch videos or do activities dedicated to the education of rare diseases,” Elzweig said.
The duo started the club with one goal in mind: to help Sebastian and others like him. “We want to help fundraise for other rare diseases that receive little support,” Arias said.
Arias and Elzweig have many ambitions for the club, all of which can be achieved through work and dedication. “We expect to raise the money necessary to fund the clinical trial for Hunter’s Syndrome, as well as other rare diseases in the future. We will also learn about the medical aspects and the legal issues [surrounding the illnesses],” Arias said.
A Care for the Rare meets every other Thursday at 3:05 in room 8210. At the past meeting Feb. 2, Elzweig presided over the group and discussed upcoming events in the club, including a Spring Fling booth and officer elections.
Show support for Project Alive and other unique diseases by coming to this service club’s meetings.