How possible is it that a cure will be found?

Researchers are currently looking into gene therapy for ALD. In this, the defective gene would be replaced with a functioning gene. This could greatly improve the chances for people in the future.
http://www.ulf.org/types/XALD.html

What are some organizations that can help?

There are many sites about ALD (Adrenoleukodystrophy)
http://www.kennedykrieger.org/patient-care/diagnoses-disorders/adrenoleukodystrophy-ald
http://www.aldsupport.org/
http://www.aldsupport.org/page/how-to-help
http://www.aldlife.org/

Aldlige.org has a "useful links" tab that brings up many more sites

What is everyday life like with Adrenoleukodystrophy?

"As the disease progressed, I got tragically worse. I felt that I was dying piece by piece, a little more each day. I gradually lost my vision to the point where I could no longer read. Reading had been the one thing which I had assumed I would be able to do forever. I felt devastated because reading was an important part of my life. "-David Sanborn


Adrenoleukodystrophy does not only effect vision. Life is made hard by many symptoms that cause a person to be bedridden including :


Changes in muscle tone, especially muscle spasms and spasticity
Crossed eyes (strabismus)
Decreased understanding of verbal communication (aphasia)
Deterioration of handwriting
Difficulty at school
Difficulty understanding spoken material
Hearing loss
Hyperactivity
Worsening nervous system deterioration
Coma
Decreased fine motor control
Paralysis
Seizures
Swallowing difficulties
Difficulty controlling urination
Possible worsening muscle weakness or leg stiffness
Problems with thinking speed and visual memory
Decreased appetite
Increased skin color (pigmentation)
Loss of weight, muscle mass (wasting)
Muscle weakness
Vomiting
http://frank.mtsu.edu/~jsanborn/dslwl.htm
http://health.nytimes.com/health/guides/disease/adrenoleukodystrophy/overview.html

How can Adrenoleukodystrophy be treated?

• Lorenzo's oil. Lorenzo's oil is a mixture of two oils (glyceryl trieucate, or GTE, and glyceryl trioleate). This mixture is supposed to regulate the fatty acid levels in the diseased person.

• Bone marrow transplantation. Bone marrow transplantation is the most successful treatment for Adrenoleukodystrophy. Unfortunately though, it does not help with advanced forms of Adrenoleukodystrophy.

http://www.ulf.org/types/XALD.html

What is the life expectancy of someone with Adrenoleukodystrophy?

People with Adrenoleukodystrophy will usually be bedridden or dead within 6 months to 20 years of the first sign of symptoms.
http://www.ulf.org/types/XALD.html

What are the symptoms?

There is a wide range of severity of Lorenzo's Oil that have been broken down into the categories below:

Childhood cerebral ALD. Childhood cerebral ALD the second most common form of Adrenoleukodystrophy. Symptoms begins between the ages of 2 and 10. Until then, development is normal. The most common symptoms are difficulty in school, behavioral disturbance, impaired vision, or impaired hearing. After first symptoms neurological symptoms appear and the health of the patients get worse. Further symptoms may include dementia, poor coordination, seizures, hyperactivity, difficulty with speech, and headaches. On average, a person lives about 2 years before being bedridden or dead.

Adolescent cerebral ALD. A small portion of Adrenoleukodystrophy patients have symptoms occur from 11-21 years old.  Symptoms include stiffness/clumsiness in the legs, weight loss, attacks of nausea, and generalized weakness, difficulty with walking, urinary disturbance, cognitive defects, emotional disturbances, and depression. This form of the disease progresses slower and withing 15 years, a person would need aid walking.

Adult cerebral ALD. Adult cerebral ALD is relatively rare. First symptoms occur between the 20s and 50s The symptoms are similar to those of dementia. The progression of the disorder is rapid. Someone will usually be bedridden or dead within 3 to 5 years.

Symptomatic heterozygotes. Women have two copies of the X chromosome, which is where the mutated gene for Adrenoleukodystrophy is. Some women who carry one healthy copy and one mutated copy of the gene. These people are heterozygous and sometimes do show some symptoms of Adrenoleukodystrophy. The symptoms can range from very mild to very severe. They are similar those of other Adrenoleukodystrophy patients, with the exception that heterozygote women rarely have impaired adrenal function.

http://www.ulf.org/types/XALD.html

How is Adrenoleukodystrophy diagnosed?

Adrenoleukodystrophy is diagnosed through a blood test that analyzes the amount of very long fatty acid chains. The amounts of these molecules are raised in a person with Adrenoleukodystrophy.
http://www.ulf.org/types/XALD.html

What are the chances of a person with Adrenoleukodystrophy passing it on to their children?

• Healthy man and healthy woman: 0 percent chance of any child
• Man with Adrenoleukodystrophy and healthy woman: 0 percent chance for the son to have Adrenoleukodystrophy; 100 percent daughter is carrier
• Man with Adrenoleukodystrophy and a carrier woman: 50 percent chance daughter will have Adrenoleukodystrophy; 50 percent chance daughter will be a carrier; 50 percent chance son will have Adrenoleukodystrophy; 50 percent chance son would be healthy
• Healthy man and woman with Adrenoleukodystrophy: 100 percent chance daughter will be a carrier; 100 percent chance the son will have Adrenoleukodystrophy
• Man with Adrenoleukodystrophy and woman withAdrenoleukodystrophy: 100 percent daughter will have Lorenzo's Oil; 100 percent son will have Lorenzo's Oil

How prevalent is Adrenoleukodystrophy?

The prevalence of X-Linked Adrenoleukodystrophy is around 1 in 20,000 individuals. This number is similar in all populations, but effects mostly males.
http://www.medic8.com/genetics/xlinked-adrenoleukodystrophy.htm

What are the possible genotypes of the parents?

The genotype of a male with Adrenoleukodystrophy would be X^r  Y.

The genotype of a female with Adrenoleukodystrophy would be X^r X^r

The genotype of a female carrier would be X^r X.

A carrier carries one copy of the altered gene. In females (who have two X chromosomes), a mutation must usually be present in both copies of the gene to cause the disorder. In some cases, however, females who are carriers of a gene mutation on the X chromosome will exhibit signs and symptoms of a disorder beginning in adulthood.

For a female to get Adrenoleukodystrophy, the father must have the disease and the mother must be at least a carrier or have it herself. All a male needs to get Adrenoleukodystrophy is the mother to be a carrier of have it herself. What is interesting about X linked recessive disease is that a father cannot pass on the disease to a son, and a diseased female must have had a diseased father.

http://www.medic8.com/genetics/xlinked-adrenoleukodystrophy.htm

How does a person inherit Adrenoleukodystrophy?

Adrenoleukodystrophy is an X-linked recessive disease. A disease is X-linked when the mutation occurs on the X--or female--chromosome. Males have one X and one Y chromosome, while females have two X's.  All the X chromosomes have to be mutated to have this disease because it is recessive. This makes the disease much more prevalent in males then in females--who can have a "back up" healthy X.
http://www.medic8.com/genetics/xlinked-adrenoleukodystrophy.htm

What is a genetic counselor?

A genetic counselor is someone who can help a person or family understand their risk for genetic conditions, educate the person or family about a disease, and assess the risk of passing a diseases on to their children. A genetic counselor will have a masters degree in genetic counseling and would have studied genetic diseases and how they run in families. Genetic counselors often work as part of a heath care team in corporation  with specially trained doctors, social workers, nurses, medical geneticists, or other specialists in order to help families make educated decisions about their heath.  They also work as patient advocates, helping individuals receive additional support and services for their health care needs.
http://www.genetichealth.com/resources_what_is_genetic_counseling.shtml