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'Bubble kid' success puts gene therapy back on track
RESEARCH Mar 19, 2015 | 23:25 pm
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MOST parents dream of a 5-week-old baby who sleeps through the night, but Aga Warnell knew something was wrong. Her baby, Nina, just wasn't hungry in the way her other daughters had been.Within weeks, Nina became very ill, says her[…] -
Bartter Syndrome and Gitelman Syndrome
RESEARCH Dec 28, 2014 | 17:21 pm
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Bartter syndrome and Gitelman syndrome are characterized by fluid, electrolyte, urinary, and hormonal abnormalities, including renal K, Na, Cl, and H wasting; hypokalemia; hyperreninemia and hyperaldosteronism without hypertension; and metabolic alkalosis. Findings include electrolyte, growth, and sometimes neuromuscular abnormalities. Diagnosis[…] -
The Salty Six: Six Foods That Load Your Diet With Salt
NUTRITION Dec 28, 2014 | 17:05 pm
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Eating too many salty foods can create all sorts of health problems, including high blood pressure. What you may not know is that a lot of common foods are packed with excess sodium.“Excess sodium in our diets has less to[…] -
Top 10 Vegetables Highest in Potassium
NUTRITION Dec 28, 2014 | 17:00 pm
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Potassium is an essential nutrient used to maintain fluid and electrolyte balance in the body. A deficiency in potassium causes fatigue, irritability, and hypertension (increased blood pressure). Overdose of potassium from natural sources is nearly impossible, however, it is possible[…]
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Kasich Signs Six Bills
NEWS Dec 19, 2016 | 22:18 pm
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COLUMBUS – Today Governor John R. Kasich signed the following bills into law: H.B. 166 (Green) extends the deadline for filing an application for the homestead exemption or 2 1/2% property tax rollback to the end of the tax year, to require that auditors certify Local Government Fund allocations to[…] -
Rare Disease Day Conference 2015 at Ohio Capital
NEWS Mar 17, 2015 | 01:06 am
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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.[…]
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Senate Approves Bartter Syndrome Legislation From Senators Schiavoni And Cafaro
EVENTS Dec 19, 2016 | 22:08 pm
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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 long[…] -
Congressmen Tim Ryan and David Joyce Introduce Resolution to Designate National Bartter Syndrome Day
EVENTS Dec 19, 2016 | 22:03 pm
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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[…]
In the News
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Gene therapy for cancer halted after patient deathPosted on: 13 September 2017, source: BioNews
Two trials assessing...- FDA makes the first gene therapy Kymriah available for treatment of pediatric ALL
Posted on: 31 August 2017, source: News Medical Life Sciences - FDA makes the first gene therapy Kymriah available for treatment of pediatric ALL
What is BARTTER SYNDROME?
Ethan's Journey
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Ohio Rare Disease Day 2016
ETHAN'S JOURNEY Feb 17, 2016 | 15:25 pm
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Created by Ethan Hoffman -
Rare Disease Day and EthansCure Coalition
ETHAN'S JOURNEY Feb 15, 2015 | 15:32 pm
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On February 18th there will be a seminar in Columbus, Ohio benefiting rare diseases. EthansCure and the Bartter Syndrome Foundation will be speaking on behalf of barter syndrome. We will be introducing[…]