Shire Human Genetic Therapies is teaming with Southern Jewish Life magazine to sponsor an essay contest that will enable a child in the region who is living with Type 1 Gaucher Disease to attend a non-profit Jewish overnight summer camp. The winner receives a four-week session at the camp, plus air transportation to the nearest regional airport.
The contest is open to those in the Southeast entering fourth through tenth grade, who have a confirmed diagnosis of Type 1 Gaucher. The essay topic is what it is like to be diagnosed with and live with Type 1 Gaucher.
Essays should be 200 to 400 words, and should be sent to editor (at) sjlmag (dot) com by March 31, or mailed to Southern Jewish Life, P.O. Box 130052, Birmingham AL 35213. A panel will judge the entries, with a final decision being made by April 18.
While the choice of camp is up to the winner (within the guidelines of the contest), selection of a camp also depends on whether space is still available for a four-week session at that camp. The camp must be a Jewish non-profit overnight camp. In our region, such camps include Ramah Darom, Barney Medintz, Coleman, Darom, Henry S. Jacobs, Judaea, Greene Family and Young Judaea. A list of such camps, used by the New Orleans-based Jewish Children’s Regional Service, is here.
The winning essay will be published in Southern Jewish Life in early summer and posted on the website, www.sjlmag.com. Entrants will need to submit a confirmed diagnosis for eligibility.
About Type 1 Gaucher:
Type 1 Gaucher Disease is an autosomal recessive disease and the most prevalent Lysosomal Storage Disorder, with an incidence of about 1 in 20,000 live births. It is also the most common genetic disease affecting Ashkenazi Jewish people (Eastern, Central and Northern European ancestry), with a carrier frequency of 1 in 10.
Type 1 Gaucher Disease results from a specific enzyme deficiency in the body, caused by a genetic mutation received from both parents. The disease course is quite variable, ranging from no outward symptoms to severe disability and death. Carrier status can be detected through blood or saliva to identify potential carriers of the Gaucher gene. Gaucher disease can be diagnosed early through a blood test. Effective treatments are available for some variants of the disease.
Shire HGT is a leading biopharmaceutical company that focuses on such rare diseases as Fabry disease, Hunter syndrome, Gaucher disease, hereditary angioedema, and metachromatic leukodystrophy—patients whose very lives often hinge on the discovery and delivery of extraordinary medicines.