News and Events

Read our latest news and all about upcoming events.

ALD Connect Joins Forces with The Myelin Project!

news | July 30, 2019

We are so excited to announce that ALD Connect will be joining forces with fellow ALD patient organization, The Myelin Project! Check out the letter below from Myelin Project president Patti Chapman, outlining this new collaboration: July 30, 2019 Dear... [...]

August Community Call

news | July 30, 2019

“Newborn Screening, Young Families, and Parents of Asymptomatic Children”– Thursday, August 15 2019 @7 PM EST -Facilitated by Suzanne Flynn, Tara Meady, and Kelly Strenges Click here to register! [...]

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 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... [...]