The case of Exondys 51 poses emotionally charged issues for families of young boys with a rare illness, who are fighting companies to get coverage for an expensive drug approved on a lower bar of proof.
NYS Entity Status
NYS Filing Date
APRIL 23, 2014
NYS DOS ID#
NYS Entity Type
DOMESTIC NOT-FOR-PROFIT CORPORATION
2014 - ALEXANDER'S AWARENESS - A LOOK AT TRISOMY AND RARE DISEASES, INC.
AROUND THE WEB
- Insurers Battle Families Over Costly Drug for Fatal Disease
By KATIE THOMAS - Thursday Jun 22, 2017
- Bald eagle threat: Lead ammo left behind by hunters
By MARY ESCH, Associated Press - Sunday Jul 16, 2017
ALBANY, N.Y. (AP) — Bald eagles have made a remarkable recovery across the United States since the pesticide DDT was banned 45 years ago, but the majestic birds are still dying from another environmental poison: lead from bullets and shotgun pellets in wildlife carcasses left behind by hunters.In New York, which has been a leader in the bald eagle restoration in the Northeast for four decades, state wildlife researchers have documented a growing number of eagle deaths from lead poisoning in recent years.In New York, lead poisoning was confirmed as the cause of death in 38 of 336 bald eagles brought to a Department of Environmental Conservation lab near Albany between 2000 and 2015, said state wildlife biologist Kevin Hynes, who does the necropsies."Eagles are doing very well, their recovery is a great success story largely supported by excise taxes paid by hunters" on lead ammunition and guns, said Lawrence Keane, senior vice president of the National Shooting Sports Association.Virginia wildlife advocate Clark said that rather than a ban on lead ammunition, his group is seeking a public education campaign so hunters are aware of the problem and how they can help.
- Amazon Plans Debt Offering to Finance Whole Foods Deal
Tuesday Aug 15, 2017
Amazon.com is on track to sell as much as $16 billion of bonds Tuesday to help fund its purchase of Whole Foods Market Inc., making a relatively rare trip to the debt market as it looks to become a major player in the grocery industry.
- Man contracts deadly disease after staying at park cabin
By Fox News - Tuesday Jul 18, 2017
A man was hospitalized with hantavirus, a rare and potentially fatal rodent-borne respiratory disease he may have contracted after staying in cabins at California parks, his family said. Spencer Fry, 22, began having symptoms of the disease during the Fourth of July weekend, his family told Fox 40. The family wrote on a crowdfunding page...
- NeuroVia Raises $14M to Test Drug for Rare, Fatal Metabolic Disease
By Frank Vinluan - Thursday Jul 20, 2017
Patients who have the rare genetic disorder cerebral adrenoleukodystrophy have few options to stave off the progressive decline of brain and muscle function. Within three to five years of diagnosis, the disease typically becomes fatal. A startup called NeuroVia has developed a drug that it says treats the metabolic defects that lead to the disease’s […]