Name
Jeremy T.
Affiliation with the University
Other
Story Relation
Twin Cities Campus
Dear Minnesota,
Dr. Laura Niedernhofer inspired my story directly, and her advertisement on KS95 brought this to my attention. My son was diagnosed with Cockayne Syndrome (CS) in 2015, shortly thereafter I began a search for experts in CS. I spoke with Laura personally later in 2015, and she explained her research at the University of Florida, while she explained she doesn't practice medicine there is research being done on CS. I met Dr. Peter Kang in 2016 and 2019 as he was seeing patients at the University of Florida. In 2021 my son caught Covid, given his diagnosis I wasn't sure what was different, so I reached out to Dr. Kang. Dr. Kang informed me he moved to the U of M and began reaching out to other doctors to see if there was a connection between Covid and CS. Dr. Kang's quick response and connections eased my fears. We have been taking my son to Dr. Kang ever since. Knowing that my son has a very rare disease with a occurrence rate of 2 in a million that has nationally known experts in this disease who are researching cures and treatments as well as just being there to help me.
Dr. Laura Niedernhofer inspired my story directly, and her advertisement on KS95 brought this to my attention. My son was diagnosed with Cockayne Syndrome (CS) in 2015, shortly thereafter I began a search for experts in CS. I spoke with Laura personally later in 2015, and she explained her research at the University of Florida, while she explained she doesn't practice medicine there is research being done on CS. I met Dr. Peter Kang in 2016 and 2019 as he was seeing patients at the University of Florida. In 2021 my son caught Covid, given his diagnosis I wasn't sure what was different, so I reached out to Dr. Kang. Dr. Kang informed me he moved to the U of M and began reaching out to other doctors to see if there was a connection between Covid and CS. Dr. Kang's quick response and connections eased my fears. We have been taking my son to Dr. Kang ever since. Knowing that my son has a very rare disease with a occurrence rate of 2 in a million that has nationally known experts in this disease who are researching cures and treatments as well as just being there to help me.