COLUMBUS – Today Governor John R. Kasich signed the following bills into law:
EthansCure was present at the Ohio Capital in Columbus supporting Rare Disease Day. We would like to thank NORD for organizing the event and helping us all to raise awareness for barter syndrome. Daniel Hoffman spoke on behalf of EthansCure educating those present on Bartter Syndrome and Tier 3 Drugs. Please get involved and help us bring light to a very dark field. Contact your State Representative or Congressman, join our Facebook or other social media sites to grow our community.
We would like to thank all of those for their support this year and joining our coalition against this disorder. May you all have a blessed Christmas and may next year bring us closer to the Cure. Happy Holidays!!!
Chairwoman Jones and members of the Senate Medicaid and Health and Human Services Committee; I would like to thank all of you for allowing me to testify today and personally thank both Senator, Cafaro and Schiavoni for introducing Senate Bill 281 to the Ohio Senate; nominating the month of May as Bartter Syndrome (BS) Awareness Month.
BS is a rare genetic kidney disorder that renders the human body incapable of absorbing Potassium, Magnesium and Calcium. The damage caused by BS on a cellular level adversely affects the body and damages the immune system, muscle growth, and neuronal function. BS often results in intellectual disabilities, short stature, vomiting, muscle spasms, hearing impairment, frequent urination and thirst, and can lead to renal failure or cardiac arrest.
HOWLAND - It's not just a handprint on a poster. It's a mark of support for people who suffer from diseases most people never knew existed.
Students at North Road Intermediate School in Howland joined painted hands to help raise awareness of conditions such as Bartter Syndrome.
There's only a one-in-a-million chance that someone will be affected by Bartter Syndrome, a rare type of kidney disorder for which there is no cure. Their classmate, fourth-grader Ethan Hoffman, deals with it every day.
Capri Cafaro, District 32 of the Ohio Senate has agreed to co-sponsor and conduct a joint resolution with Senator Joe Schiavoni to promote an Awareness Day for Bartter and Gitelman Syndrome. We met with Senator Cafaro shortly after our meeting with Senator Joe Schiavoni. The Bartter Syndrome Foundation would like to personally thank both of them for their assistance in making our dream a reality.
Senator Joe Schiavoni, District 33of the Ohio Senate has agreed to assist the Bartter Syndrome Foundation in creating an Awareness week for Bartter and Gitelman Syndrome. Senator Schiavoni has proposed a resolution for nominating a week in the month of May to be dedicated to spreading awareness and advocacy for Bartter and Gitelman Syndromes.
Bartter syndrome is not a single disorder but rather a set of closely related kidney disorders that cause an imbalance of potassium, sodium, chloride, and related molecules in the body. It is thought to be caused by a genetic mutation in the kidneys, resulting in the body's inability to reabsorb potassium. Symptoms and their intensity, vary among the different types of bartter syndrome. In general, the syndrome is characterized by growth deficiency, potentially resulting in short stature and dwarfism; muscle weakness, dehydration and severe cramps due to loss of potassium and chloride in the urine.