At first glance, Ethan Hoffman looks like any average 11-year-old boy. But over the past decade, the Howland boy’s journey through childhood has been filled with challenges and hope.
Ethan has a rare disorder known as Bartter Syndrome. It’s a disease that affects the kidneys. After four years of trying to figure out what was wrong with their son, Ethan’s parents, Lilia and Daniel Hoffman, were shocked by the diagnosis and decided to take action.
We thank you ALL for your continued support this year and look forward to a prosperous 2015. This past year was difficult, but successful. Bartter Syndrome Awareness Month has passed both the Senate and House of Representatives in the State of Ohio. In the next year we will push our ambitions to Washington DC to nominate a National Awareness Day for Bartter Syndrome. We are thankful to our donors that allow us to pursue our endeavors and goal for awareness month. Please encourage Friends and Family members to share the link for the Bartter Awareness Bracelets; so we can spread awareness and advocacy for this rare disease: http://www.barttersyndromefoundation.org/index.php/en/advocacy/advocacy-store/catalog-accessories/accessories-wristband
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!!!
Most children love animals. The joy in an child’s face at the sight of a dog, a cat, or a guinea pig is something all parents love to behold. It’s also something scientists say can be an especially good thing for children who suffer with anxiety disorders or depression. Whether they participate in special animal-assisted therapy, or their families simply open their homes up to a pet, this human-animal bond has many benefits.
The Bartter Syndrome Foundation, 'EthansCure.org' has received verification from the United States Internal Revenue Service for 501(c)3 public charity status. A public charity, identified by the Internal Revenue Service (IRS) as "not a private foundation", normally receives a substantial part of its income, directly or indirectly, from the general public or from the government. The public support must be fairly broad, not limited to a few individuals or families. As a result our foundation can now assist more families and donate additional funds for research in hopes of finding a cure and/or alleviating some of the deleterious symptoms of this disease. Please help us and join our mission at raising awareness and advocacy for barter and gitelman syndrome!
Ethan, You are truly an inspiration to us All. We wish you a very Happy 11th Birthday! May all your dreams and wishes come true. Keep on fighting for yourself and all of the Bartter Syndrome carriers around the world. God Bless and enjoy your day.
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.
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.
Seoul Korea, Tues., February 20, 2011 – A sequence analysis of the BSND gene showed that the affected males were homozygous for a missense G47R mutation in exon 1 of BSND. These findings suggest that the G47R mutation results in a dramatic decrease in barttin expression, which appears to be related to the location of ClC-K being changed from the basement membrane to the cytoplasm in the tubule an migh thave varying effects on the renal function associated with factors other than this gene.