Alexander Matthew’s ALD Story and Legacy: Part 2
This is Part 2 of Alexander’s Story, click here to read Part 1. During Alex’s journey Jhoanny had gotten some information from NORD’s website and
United Leukodystrophy Foundation
United Leukodystrophy Foundation
Located in DeKalb, Illinois, the United Leukodystrophy Foundation (ULF), is a nonprofit, voluntary health organization dedicated to providing patients and their families with information about their disease and assistance in identifying sources of medical care, social services, and genetic counseling; establishing a communication network among families; increasing public awareness and acting as an information source for health care providers; and promoting and supporting research into causes, treatments, and prevention of the leukodystrophies. Leukodystrophies comprise a group of genetic nervous system disorders affecting the myelin sheath, which insulates the axon through which nerve impulses are conducted. Incorporated in 1982, the United Leukodystrophy Foundation is solely supported and funded by donations.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on Leukodystrophy
Alexander Matthew’s ALD Story and Legacy: Part 1
Jhoanny’s son Alexander Matthew was born perfectly healthy in 2008. When Alexander was three, Jhoanny noticed he seemed to be drinking a lot of water
Working to Improve Gene Therapy for Adrenoleukodystrophy and Other Rare Conditions
Rare disease research is often underrepresented in the field of science. However, recent developments have made researchers more interested in studying this group of diseases.
The First US Patients Have Been Dosed in a Study of a Drug For AMN
The first US patient has been dosed with the drug MIN-102 as part of a clinical trial into its effects in patients with adrenomyeloneuropathy. For
The Family Impact of ALD
Erika Baker and her family have been dealing with the impact of adrenoleukodystrophy (ALD) for generations. The disease has impacted several of her family members,
A Study Will Look at the Effects of an Experimental Drug on Childhood Cerebral ALD
A Phase 1/2 clinical trial of the experimental drug NV1205 in patients with childhood cerebral adrenoleukodystrophy (CCALD) has been initiated, announced NeuroVia Inc. The source
