May 11, 2018
Last month, nonprofit Project Alive began a campaign called #15byMay15 to raise the remaining $1.5 million needed to fund a clinical drug trial for the rare disease Hunter Syndrome / MPS II that could begin as early as this summer.
Apr 23, 2018
What if your child had a rare and fatal disease for which doctors thought they had developed a cure, but the cure sits in medical research limbo due to funding? This is the real scenario facing the parents who have formed the non-profit foundation...
Dec 20, 2017
Vector Production and Active IND Meet Major Milestones in Foundation-Scientists Collaboration to Develop an Experimental Therapy for Young Boys with a Rare Dementia-Like Disease
Dec 06, 2017
Families Are Making A Cure A Reality for the Rare Disease Hunter Syndrome / MPS II
Jul 27, 2017
Parents Trying to Help Fund a Cure For the Rare Disease Hunter Syndrome / MPS II
Jun 27, 2017
Parent Efforts Bringing Awareness to the Rare Disease Hunter Syndrome / MPS II
Oct 31, 2016
Parent-led fundraising efforts have donated over $500,000 to treat the rare disease Hunter Syndrome (MPS II)
May 02, 2016
Efforts Bringing Awareness to Hunter Syndrome Are Recognized by Telly Awards and International Songwriting Competition
Mar 28, 2016
"Alive" Focuses on Son's Fight Against Terminal Disease Called Hunter Syndrome
Oct 19, 2015
A rare disease foundation is launching a new initiative to encourage pharmaceutical and biotech companies to engage patients in their pre-clinical research and clinical trial design.