My son, Ethan was undiagnosed for years and we nearly lost him twice due to misdiagnoses and lack of support and education. The general public and the medical community does not encompass an abundance of support and information relating to BS, and it's because of this lack of education and support that my wife and I decided to be proactive and try to change the situation.
We started a non-profit organization termed, The Bartter Syndrome Foundation. Our foundation financially assists families struggling with BS, raises money for research, and offers family assistance programs.
One out of a million people are affected by this rare disorder, roughly 300 in the US and over 7000 worldwide. It is our theory that this number is much higher, but due to lack of awareness and advocacy; this disorder is often left undiagnosed and not reported.
We are here today to show people that have this disorder or know someone battling this disorder that they're not alone. So few people share their personal story, so few people have something to relate to. Our aim is to promote advocacy and increase awareness for bartter syndrome; offering education, support and hopes of finding a cure.
I ask the members of the Senate Medicaid and Health and Human Services Committee to join us in recognizing the month of May as Bartter Syndrome Awareness Month. This is an important time during which the BS community will help increase the awareness of this devastating disease, as well as supporting research to improve treatments, find cures and receive early diagnosis. During the month of May, BS families are encouraged to reflect and support each other and to reach out to those families who have lost loved ones to BS.
I would like to thank the committee again for the opportunity to share my story and to voice my support for the Month of May as Bartter Syndrome Awareness Month. Thank you very much.