Raise the Line has been honored to be part of Osmosis from Elsevier’s Year of the Zebra campaign and we’re happy to share that this successful effort will continue throughout 2024. To mark that commitment and to celebrate Rare Disease Day, we have a very special episode of the podcast for our listeners in which, for the first time, we interview a child faced with the challenge of living with a rare condition.  She is Maddie McNeer, a seven-year-old from Kansas who developed a rare eye disorder called Coats disease which is characterized by abnormal development of blood vessels in the retina. According to the National Organization for Rare Disorders, affected individuals may experience loss of vision due to changes in the retina and, in severe cases, retinal detachment. Maddie and her mom, Loren McNeer, join host Lindsey Smith to share their family’s journey with Coats disease including the multiple treatments she’s had, the challenges in finding information and support, the positive experiences with healthcare providers and Maddie’s remarkable ability to rise above it all and, as she says, not let Coats disease hold her down. This is a super informative and inspiring episode that you won’t want to miss. 

Mentioned in this episode:

https://www.coatsdiseasefoundation.org/

https://www.osmosis.org/zebra