News and Events
Read our latest news and all about upcoming events.
July Community Calls
news | July 9, 2019
Please join us for our July Community Calls! “Symptomatic Women”– Wednesday, July 10th 2019 @7 PM EST -Facilitated by JoAnn Locy and Janis Sherwood Click here to register! “Symptomatic Men”– Wednesday, July 17th 2019 @7 PM EST -Facilitated by Justin... [...]
New Combination of High-Dose Antioxidants as Therapy for AMN
news | June 12, 2019
A new trial using high dose antioxidants has improved symptoms in patients with AMN by targeting oxidative stress. Read the abstract below from “Biomarker Identification, Safety, and Efficacy of High-Dose Antioxidants for Adrenomyeloneuropathy: a Phase II Pilot Study” to learn... [...]
Emory University Newborn Screening Study
news | June 5, 2019
Emory University in Georgia is recruiting ALD patients of any age and gender to give a single blood sample to provide quality control for newborn screening of ALD. Below is a letter from Emory Lysosomal Storage Disease Center outlining the... [...]
2019 Annual Meeting Registration
news | June 4, 2019
Register now for our 2019 Annual Meeting & Patient Learning Academy. Registration will close on October 1st, 2019. Limited financial assistance is available for travel and other costs. To apply for financial assistance, please email info@aldconnect.org. Costs are as follows: Academia, researchers, scientists:... [...]
2018 Annual Meeting
news | October 2, 2018
ALD Connect 2018 Annual Meeting & Patient Learning Academy Videos 2018 Patient Learning Academy Videos 2018 Annual Meeting Videos Program Day 1: ALD Connect Consortium Annual Meeting 8:00 am Breakfast and Registration 8:30 am Welcome: Updates on ALD and AMN... [...]
ALD Connect SCOUT program
news | February 9, 2018
With the creation of the NBS SCOUT Initiative (Supportive Community Outreach & Understanding Together), ALD Connect will draw upon the experience of previously-diagnosed ALD families and a wealth of information and resources to help answer any questions these young families... [...]
New website!
news | January 22, 2018
On monday, January 22th our new website went live! [...]
Recommended Uniform Screening Panel (RUSP)
news | February 9, 2018
ALD was added to the Recommended Uniform Screening Panel (RUSP), a federal list of all genetic diseases recommended for state newborn screening (NBS) programs, in February 2016. However, at this time, only FIVE states actively test their newborn population for... [...]