[Congressional Record Volume 170, Number 97 (Friday, June 7, 2024)]
[Extensions of Remarks]
[Page E602]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




          RECOGNIZING JUNE 9TH AS BATTEN DISEASE AWARENESS DAY

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                            HON. AARON BEAN

                               of florida

                    in the house of representatives

                          Friday, June 7, 2024

  Mr. BEAN of Florida. Mr. Speaker, I rise today in honor of Batten 
Disease Awareness Day. Batten Disease is a fatal rare disease of the 
nervous system that usually begins in childhood. In the U.S., an 
estimated two to four children out of every 100,000 will get the 
disease, and unfortunately, there is no cure.
  On June 9th Batten Disease advocates around the world will celebrate 
International Batten Disease Awareness Day. Families and caregivers 
impacted by this disease are often fighting a silent battle due to a 
lack of public awareness. Increasing awareness helps honor their fight 
and strengthen the development of innovative treatment options and 
research for a cure. That's why last year I was proud to introduce a 
resolution in support of Batten Disease Awareness Day.
  I urge my colleagues to join me on June 9th in honoring the families 
and caregivers, and most importantly, the children who have been 
impacted by this terrible disease.

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