EVENTS
Friday, 11 January 2019 19:59
New Bartter Syndrome Awareness Hoodies Featured
New arrivals to show your support and advocacy for Bartter Syndrome. Hoodies are Gildan Heavy Blend™ 8 oz., 50/50 Hood. 50% cotton, 50% polyester. Pill-resistant air jet yarn. Double-needle stitching throughout. Double-lined hood. 1×1 ribbed cuffs and waistband with spandex. Pouch pocket. Matching drawstring Click Here to Enter Store
Published in
EVENTS
Tuesday, 20 December 2016 05:08
Senate Approves Bartter Syndrome Legislation From Senators Schiavoni And Cafaro Featured
COLUMBUS - Yesterday, Senator Joe Schiavoni (D-Boardman) and Senator Capri S. Cafaro (D-Hubbard) introduced S.B. 128, which would designate May 30th as Bartter Syndrome Awareness Day. The Senate passed S.B. 128 with unanimous support. “Bartter Syndrome is not well known, which often means those suffering from it wait far too…
Published in
EVENTS
Tuesday, 20 December 2016 05:03
Congressmen Tim Ryan and David Joyce Introduce Resolution to Designate National Bartter Syndrome Day
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…
Published in
EVENTS
Friday, 06 February 2015 15:38
Thank You Salvatores and Generous Donors
We would like to send out a special thanks to Salvatore's Restaurants and Rose for sponsoring a fundraiser last weekend for the Bartter Syndrome Foundation. Your efforts will not go unnoticed and it is the support and generosity from people like you that allow us to continue to raise awareness…
Published in
EVENTS
Tuesday, 30 September 2014 17:10
EthansCure.org has attained 501(c)3 Public Charity Status from the IRS
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…
Published in
EVENTS
Tuesday, 25 March 2014 07:35
Help Spread Awareness for Bartter and Gitelman Syndrome
The vast majority of the population is unaware and not informed about the myriad of individuals suffering from rare genetic kidney disorders. By purchasing a Bracelet, you are making an effort to reach out to those affected by rare genetic disorders and show your support by promoting awareness. The $5…
Published in
EVENTS
Monday, 10 February 2014 06:57
EthansCure Winter Fundraiser 2013
December 7th 2013. Thanks to all that came out in support of those with rare genetic kidney disorders. We had a great turn-out at Jack Perry's Pub & Grill. A special thanks goes out to Brent Furrie for hosting the event. Our efforts generated the remaining funds for our IRS…
Published in
EVENTS
Monday, 10 February 2014 06:33
EthansCure Halloween Fundraiser
October 22, 2013. The Bartter Syndrome Foundation held its first ever Fundraiser! The event was a Halloween Fundraiser and included a haunted maze, games for children, raffle baskets and 50/50. Thank you to all our sponsors and volunteers for making this event a success. Our organization was able to raise…
Published in
EVENTS
New Arrivals
In the News
-
Gene Therapy Drug Approval to Skyrocket by 2025Posted on: 16 January 2019, source: FDA
The FDA expects...- Gene therapy for Crigler-Najjar syndrome - First patient treated in the European clinical trial
Posted on: 25 December 2018, source: Eurekalerts
Following patient recruitment... - Gene therapy for Crigler-Najjar syndrome - First patient treated in the European clinical trial