News
Read our latest news.
ALD and COVID-19: Frequently Asked Questions
news | April 1, 2020
Our experts have addressed many of your questions about ALD and COVID-19. Click on the link to view the document. ALD and COVID-19: Frequently Asked Questions Thank you to Catie Becker, NP, Florian Eichler, MD, Troy Lund, MD, PhD, Molly... [...]
COVID-19
news | March 18, 2020
What is known about COVID-19? 1. COVID-19 is a virus that can cause a severe respiratory illness in some individuals. 2. High-risk groups include older patients and those with pre-existing heart disease, lung disease, and diabetes. 3. Children tend to... [...]
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 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... [...]
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... [...]