Tuesday, 20 December 2016 05:03

Congressmen Tim Ryan and David Joyce Introduce Resolution to Designate National Bartter Syndrome Day

Written by 
Rate this item
(1 Vote)

Washington, D.C. – Congressman Tim Ryan (D-OH) and Congressman David Joyce (R-OH) today introduced a resolution to designate each May 30th as National Bartter Syndrome Day. This designation would give much needed attention and increase awareness for the one million people worldwide affected by Bartter Syndrome and their families working though the difficulties associated with this little known disease. Bartter Syndrome is a group of very similar kidney disorders that cause an imbalance of potassium, sodium, chloride, and other molecules in the body. This legislation was inspired by 12 year old Ethan Hoffman from Warren, Ohio who suffers from Bartter Syndrome and with his family, has met with Congressman Ryan to brief him on the importance of increasing awareness for this disease.

 

“It is my hope that by introducing this resolution, we will begin to increase awareness and attention to this disease that affects so many here in Ohio and across the world. I am hopeful that with continued effort and awareness we can increase funding for research and find an eventual cure,” said Congressman Tim Ryan. “I commend the Hoffman family and especially Ethan for their hard work and relentless advocacy, and for bringing the hardships and scope of this disease to my attention. I hope the House of Representatives will move quickly to pass this important resolution”

“I’m proud to join Tim in introducing this resolution to raise awareness for Bartter Syndrome,” said Congressman David Joyce. “It is my hope that each May 30th will bring more attention to the struggles that each affected family faces, and the need for more research so that we can treat, and ultimately cure, this rare disease.”

“Our son Ethan has an incurable rare genetic kidney disorder which causes premature birth and detrimental symptoms that can lead to cardiac arrest without treatment,” said Liliya Hoffman, Chairwoman of the Bartter Syndrome Foundation. “At 12 years old Ethan has become an advocate for his disease and it is his mission to make May 30th ‘National Bartter Syndrome Awareness Day’ to reach out to the newly diagnosed and educate the general public on this life-threatening chronic disorder and ultimately find a cure.”

In most cases, the antenatal form of Bartter Syndrome, which begins before birth is often life-threatening. This form is characterized by abnormally high levels of amniotic fluid surrounding the fetus, premature delivery, and salt loss.  The other form of Bartter syndrome begins in early childhood and tends to be less severe, causing individuals to experience symptoms such as fatigue, muscle weakness, growth delay, and developmental delay. 

Last modified on Saturday, 24 December 2016 17:50

Ethan's Journey