Mom Runs Chicago Marathon to Raise CCHS Awareness

Laura Brown never planned on running more than one marathon. In 2012, she tackled a marathon as a way to cross an item off of her bucket list. But since then, she’s run the Chicago Marathon six times – and this year was no different. Laura decided to run 26.2 miles for an important cause: raising congenital central hypoventilation syndrome (CCHS) awareness. According to CBS News Chicago, Laura took to the streets on October 9, 2022 to inform people about CCHS and raise important funds for research.

Both of Laura’s children – Robbie, age seven, and Josie, age five – were diagnosed with CCHS. Since only around 1,200 people worldwide are known to have CCHS, it is incredibly important to raise awareness and to advance research. To care about something, Laura believes you have to know about it – so she’s doing everything that she can to make it known.

Laura finished her marathon in five hours and three minutes, and is so thankful for all of the support she received along the way. She also helped to raise over $9,000 to be donated to the CCHS Family Network. Although the race has passed, Laura is still raising money via her GoFundMe. If you’d like to contribute to the cause, you may donate here

What is Congenital Central Hypoventilation Syndrome (CCHS)? 

Congenital central hypoventilation syndrome (CCHS) is a rare disorder which affects the central and autonomic nervous systems, which control automatic functions in the body such as heart rate, blood pressure, temperature, bladder control, and breathing. CCHS is characterized by inadequate breathing, especially during sleep. Without prompt treatment, such as respiratory support, this disorder can be life-threatening. CCHS results from PHOX2B mutations which cause the PHOX2B protein to not work properly. These mutations may be inherited or occur spontaneously. Symptoms are typically noticeable soon after birth and can (but do not always) include:

  • Hypoventilation (breathing at an abnormally slow rate / inability to control breathing) 
  • Reduced and shallow breathing during non-REM sleep
  • Poor circulation
  • Cyanosis (bluish discoloration to the skin and lips) 
  • Cardiac asystoles (heart stops beating)
  • Altered blood pressure regulation
  • Decreased pupil response to light
  • Decreased perceptions of pain
  • Occasional heavy sweating
  • Severe constipation
  • Intestinal blockage
  • Enlarged colon
  • Learning difficulties
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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