ALD
Suddenly, I had the body of an 85-year-old. Our society has a very traditional vision of masculinity — a man should be able to throw a ball, jump, run. I had to reinvent myself with my disease - Ben LeNail
image by: Hunter's Hope Foundation
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A Rare Disease Won’t Keep This Mountain Man Off the Trails
Two decades ago, Ben LeNail’s typical weekend included a mix of cycling, running, backpacking, mountaineering and skiing. A self-described mountain man, he had summited bucket-list peaks, including Mount Rainier in Washington and Monte Rosa in Switzerland, in his 30s. But in his early 40s, he found himself struggling to find his footing on the trails.
At first, he thought the lethargy could be age-related. But at home, leaden legs turned his gait into a shuffle. In 2011, after a three-year diagnostic odyssey, Mr. LeNail was told he had X-linked adrenoleukodystrophy (ALD). The rare neurodegenerative disease, dramatized in the movie “Lorenzo’s Oil,” is similar to progressive multiple…
Resources
In a First, Gene Therapy Halts a Fatal Brain Disease
The study opens new avenues for using gene therapy to treat brain diseases, said Dr. Theodore Friedmann, a gene therapy pioneer at the University of California San Diego School of Medicine. “Many think the central nervous system is intractable and unapproachable,” he said. This study proves them wrong.
A Never-Ending Battle: ALD Causes Many Setbacks For This Mother Of Two
In 2004, I was told by my biological mother that my son would have a 50/50 chance of being diagnosed with Adrenoleukodystrophy. I asked the doctors to test me, but they wanted to wait because I was considered high risk. My son was born November 15th, 2004.
A Rare Disease Won’t Keep This Mountain Man Off the Trails
Ben LeNail has the neurodegenerative disease ALD, but a daily exercise regimen and Pilates help him stay healthy and active.
Hunter’s Hope
Hunter’s Hope Foundation was established to address the acute need for information and research with respect to Krabbe Disease and related Leukodystrophies. In addition, our mission is to strive to support and encourage those afflicted and their families as they struggle to endure, adjust and cope with the demands of these fatal illnesses.
Aidan Jack Seeger Foundation
Addressing the need for information and newborn screening with respect to Adrenoleukodystrophy.
ALD Connect
Our mission is to improve health outcomes for patients with X-linked adrenoleukodystrophy (ALD) by empowering patients, raising awareness, and accelerating the translation of scientific advances into better clinical care.
ALD Life
ALD Life is a patient support group and registered charity for patients and families with Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN).
Fight ALD
Fighting illness through education.
Little Warriors
As a mother of three ALD boys and a Aunt to two ALD angels , I know how important it is to Raise Awareness to ADRENOLEUKODYSTROPHY and demand that it be added to newborn screening...
Stop ALD Foundation
The Stop ALD Foundation focuses on accelerating the process of developing new knowledge and new therapies for adrenoleukodystrophy (ALD), and works to accelerate implementation of newborn screening for ALD. As well, there is a focus on the adult form of the disease, Adrenomyeloneuropathy (AMN).
The Myelin Project
Adrenoleukodystrophy (also known as X-linked adrenoleukodystrophy, ALD) is a rare, genetic disorder characterized by the breakdown or loss of myelin – the fatty covering surrounding nerve cells in the brain – and progressive dysfunction of the adrenal gland. As an X-linked disorder, ALD presents most commonly in males and occurs in about one out of every 17,000 births.
BluebirdBio
Adrenoleukodystrophy (ALD) is a rare, genetic, X-linked metabolic disorder caused by mutations in the ABCD1 gene that result in a deficiency in a peroxisomal protein called adrenoleukodystrophy protein (ALDP).
NORD
Adrenoleukodystrophy is an X-linked recessive genetic disorder caused by an abnormality in the ABCD1 gene on the X chromosome. This condition affects the white matter of the nervous system and the adrenal cortex.
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