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RARE DISEASES
by
Gustavo Gutierrez
A Professional Project Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
MASTER OF ARTS
(BROADCAST JOURNALISM)
May 2012
Copyright 2012 Gustavo Gutierrez
Object Description
| Title | Rare diseases |
| Author | Gustavo, Gutierrez |
| Author email | g2gutierrez@yahoo.com;gutie5@usc.edu |
| Degree | Master of Arts |
| Document type | Thesis |
| Degree program | Journalism (Broadcast Journalism) |
| School | Annenberg School for Communication |
| Date defended/completed | 2012-05-08 |
| Date submitted | 2012-05-08 |
| Date approved | 2012-05-09 |
| Restricted until | 2012-05-09 |
| Date published | 2012-05-09 |
| Advisor (committee chair) | Birman, Dan |
| Advisor (committee member) |
Gutierrez, Felix Ko, Chien-Ping |
| Abstract | Rare diseases or also commonly known as orphan diseases are devastating for the person dealing with them, but also for the entire family. They are emotionally difficult to deal with, but also a huge financial burden for families because they require a lot of treatments and medication. The two rare diseases that will be profiled have no cure. Experts, say that two of the main reasons why a cure is yet to be found for these two rare diseases are the fact that they are rare, which do not affect a larger population and not enough money is invested in them to do more research. ❧ In particular, Spinal Muscular Atrophy has research being done at a university level by Chien-Ping Ko, professor at USC, and he feels optimistic about soon finding a drug that will give cure to patients or at least minimize the pain that SMA patients bear. ❧ This documentary profiles Maria Garibay, a Spinal Muscular Atrophy Type 2 patient who was diagnosed with this rare disease at 2 years old. She was never able to walk, but feels she had some kind of independence when she was younger because she completed high school and was able to go outdoors more than now since she is confined to a bed for the majority of the time. Her mother is her primary caregiver and she stopped working to provide for her daughter’s needs daily. ❧ Javier Arreola is also profiled in this documentary and suffers another rare disease called Cystic Fibrosis. He was diagnosed at 1 year and 6 months with this rare disease and his level of hope for a cure to be found is very optimistic at 10 years old. Just like Maria, Javier also goes through daily treatments and takes medication to provide him a healthier lifestyle, but most importantly to prolong life. To provide context for Maria’s and Javier’s life experience, their stories are supplemented by expert interviews, including Professor & Head Section of Neurology Department of Biological Sciences at USC, Doctor of Pediatrics and Neurology at Children’s Hospital Los Angeles, and the CEO of Madison’s Foundation, a non-profit organization that provides support to moms and dads of a child dealing with a rare disease. Accompanied to the stories are also Maria’s and Javier’s family members. |
| Keyword | spinal muscular atrophy; cystic fibrosis; type II; diseases; rare; U.S. Congress; funding; Madison's Foundation; Children's Hospital; Spinal Muscular Atrophy research. |
| Language | English |
| Part of collection | University of Southern California dissertations and theses |
| Publisher (of the original version) | University of Southern California |
| Place of publication (of the original version) | Los Angeles, California |
| Publisher (of the digital version) | University of Southern California. Libraries |
| Provenance | Electronically uploaded by the author |
| Type | texts |
| Legacy record ID | usctheses-m |
| Contributing entity | University of Southern California |
| Rights | Gustavo, Gutierrez |
| Access conditions | The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the author, as the original true and official version of the work, but does not grant the reader permission to use the work if the desired use is covered by copyright. It is the author, as rights holder, who must provide use permission if such use is covered by copyright. The original signature page accompanying the original submission of the work to the USC Libraries is retained by the USC Libraries and a copy of it may be obtained by authorized requesters contacting the repository e-mail address given. |
| Repository name | University of Southern California Digital Library |
| Repository address | USC Digital Library, University of Southern California, University Park Campus MC 7002, 106 University Village, Los Angeles, California 90089-7002, USA |
| Repository email | cisadmin@usc.edu |
| Archival file | uscthesesreloadpub_Volume4/etd-GustavoGut-821.pdf |
Description
| Title | Page 1 |
| Contributing entity | University of Southern California |
| Full text | RARE DISEASES by Gustavo Gutierrez A Professional Project Presented to the FACULTY OF THE USC GRADUATE SCHOOL UNIVERSITY OF SOUTHERN CALIFORNIA In Partial Fulfillment of the Requirements for the Degree MASTER OF ARTS (BROADCAST JOURNALISM) May 2012 Copyright 2012 Gustavo Gutierrez |
