ALS Awareness Facts: Day 25

Fact: There are presently no treatments to effectively slow or halt disease progression of ALS

Current treatment of ALS is aimed at symptomatic relief, prevention of complications and maintenance of maximum optimal function and optimal quality of life.

Most of this, in the later stages, requires nursing management of a patient who is alert but functionally quadriplegic with intact sensory function and bedridden.

Riluzole, the first treatment to alter the course of ALS, was approved by the FDA in late 1995. This antiglutamate drug was shown scientifically to prolong the life of persons with ALS by at least a few months.

More recent studies suggest Riluzole slows the progress of ALS, allowing the patient more time in the higher functioning states when their function is less affected by ALS.

Reports from three separate patient databases described long range experience with Riluzole. All three reports suggest a trend of increasing survival with Riluzole over time.

More studies are needed to confirm these database observations. The trend appears to indicate that longer periods of time than those used in the Riluzole clinical trials may be needed to see the long-term survival advantage of the drug.

Click here for more information on the drug. Rilutek® (Riluzole) is manufactured by Sanofi-Aventis Pharmaceuticals, who sponsor a Patient Assistance Program that helps patients who qualify receive the drug.

Many private health plans cover the cost of Riluzole. Further information on Riluzole coverage through Medicare Prescription Drug Benefit can be found in the Advocacy pages of this website.

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The RASCALS Foundation is doing everything it can year-round to spread the message about Lou Gehrig’s disease. In reality, this is everybody’s disease—and there is so much more to do.

In addition to raising awareness, we also work to raise much-needed financial resources for the ALS community.

You can make a secure online donation via PayPal here, or mail your gift here:

RASCALS Foundation

P.O. Box 31834

St. Louis, MO 63131

How is your money used?

RESEARCH GRANTS

On your behalf, RASCALS has made annual contributions to ALS research centers so they can keep searching for answers and treatments.

The Neuromuscular and Clinical Neurophysiology Services Group of St. Louis University was a 2013 recipient.

HIGHER EDUCATION SCHOLARSHIPS

The financial burdens of ALS are as horrific as the disease itself. So each year we present college scholarships to members of families affected by ALS.

The scholarship awards are based in part on applicants’ original essays that address “How ALS Has Influenced My Life.”

RASCALS GIVES 100%

The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is an all-volunteer 501(c)(3) charity.

You can be sure that 100%  of every dollar that you donate  goes to building awareness, treatment research and development, plus ALS family assistance.

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This is ALS Awareness Month. Please make it a point to tell someone about ALS, also known as Lou Gehrig’s disease.

Thank you for all you do.

ALS Awareness Facts: Day 24

Fact: Lou Gehrig’s disease eventually affects total body movement, as well as speech, swallowing and breathing

ALS ultimately results in a total body paralysis, inability to speak, inability to eat or drink by mouth, and inability to breathe unassisted.

Finally there is simply an inability to breathe.

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The RASCALS Foundation is doing everything it can year-round to spread the message about Lou Gehrig’s disease. In reality, this is everybody’s disease—and there is so much more to do.

In addition to raising awareness, we also work to raise much-needed financial resources for the ALS community.

You can make a secure online donation via PayPal here, or mail your gift here:

RASCALS Foundation

P.O. Box 31834

St. Louis, MO 63131

How is your money used?

RESEARCH GRANTS

On your behalf, RASCALS has made annual contributions to ALS research centers so they can keep searching for answers and treatments.

The Neuromuscular and Clinical Neurophysiology Services Group of St. Louis University was a 2013 recipient.

HIGHER EDUCATION SCHOLARSHIPS

The financial burdens of ALS are as horrific as the disease itself. So each year we present college scholarships to members of families affected by ALS.

The scholarship awards are based in part on applicants’ original essays that address “How ALS Has Influenced My Life.”

RASCALS GIVES 100%

The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is an all-volunteer 501(c)(3) charity.

You can be sure that 100%  of every dollar that you donate  goes to building awareness, treatment research and development, plus ALS family assistance.

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This is ALS Awareness Month. Please make it a point to tell someone about ALS, also known as Lou Gehrig’s disease.

Thank you for all you do.

ALS Awareness Fact: Day 23

Fact: Approximately 14 cases of ALS are diagnosed each day nationwide

Most of those who develop the disease are between 40 and 70 years of age. At any given time, approximately 30,000 people in the United States are living with the disease.

It is frequently Caucasians who are diagnosed, though it is not limited to the Caucasian population. It’s been said that 60% of all ALS cases are males.

There is a 1 in 100,000 chance of it striking the same family twice, and it does strike some families twice.

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The RASCALS Foundation is doing everything it can year-round to spread the message about Lou Gehrig’s disease. In reality, this is everybody’s disease—and there is so much more to do.

In addition to raising awareness, we also work to raise much-needed financial resources for the ALS community.

You can make a secure online donation via PayPal here, or mail your gift here:

RASCALS Foundation

P.O. Box 31834

St. Louis, MO 63131

How is your money used?

RESEARCH GRANTS

On your behalf, RASCALS has made annual contributions to ALS research centers so they can keep searching for answers and treatments.

The Neuromuscular and Clinical Neurophysiology Services Group of St. Louis University was a 2013 recipient.

HIGHER EDUCATION SCHOLARSHIPS

The financial burdens of ALS are as horrific as the disease itself. So each year we present college scholarships to members of families affected by ALS.

The scholarship awards are based in part on applicants’ original essays that address “How ALS Has Influenced My Life.”

RASCALS GIVES 100%

The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is an all-volunteer 501(c)(3) charity.

You can be sure that 100%  of every dollar that you donate  goes to building awareness, treatment research and development, plus ALS family assistance.

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This is ALS Awareness Month. Please make it a point to tell someone about ALS, also known as Lou Gehrig’s disease.

Thank you for all you do.

ALS Awareness Facts: Day 22

Fact: In some circles, motor neuron disease is used interchangeably with Lou Gehrig’s disease, however ALS is only one recognized subtype of MND.

Motor neurone diseases (MND), also spelled “neuron,” are actually a group of neurological disorders that selectively affect motor neurons, which are cells that control voluntary muscle activity including speaking, walking, breathing, swallowing and general movement of the body.

In addition, there is primary lateral sclerosis (PLS), progressive muscular atrophy (PMA), progressive bulbar palsy, and psuedobulbar palsy.

Some also consider spinal muscular atrophy part of the MND class.

The disorders share a great deal in common with ALS, including average age at diagnosis, many symptoms, and disease progression.

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The RASCALS Foundation is doing everything it can year-round to spread the message about Lou Gehrig’s disease. In reality, this is everybody’s disease—and there is so much more to do.

In addition to raising awareness, we also work to raise much-needed financial resources for the ALS community.

You can make a secure online donation via PayPal here, or mail your gift here:

RASCALS Foundation

P.O. Box 31834

St. Louis, MO 63131

How is your money used?

RESEARCH GRANTS

On your behalf, RASCALS has made annual contributions to ALS research centers so they can keep searching for answers and treatments.

The Neuromuscular and Clinical Neurophysiology Services Group of St. Louis University was a 2013 recipient.

HIGHER EDUCATION SCHOLARSHIPS

The financial burdens of ALS are as horrific as the disease itself. So each year we present college scholarships to members of families affected by ALS.

The scholarship awards are based in part on applicants’ original essays that address “How ALS Has Influenced My Life.”

RASCALS GIVES 100%

The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is an all-volunteer 501(c)(3) charity.

You can be sure that 100%  of every dollar that you donate  goes to building awareness, treatment research and development, plus ALS family assistance.

#

This is ALS Awareness Month. Please make it a point to tell someone about ALS, also known as Lou Gehrig’s disease.

Thank you for all you do.

ALS Awareness Facts: Day 21

Fact: Although there have been recent breakthroughs in understanding ALS, scientists still do not know the cause

One important step  came in 1993 when scientists  discovered that mutations in the gene that produces the SOD1 enzyme were associated with some cases of familial ALS.

This enzyme is a powerful antioxidant that protects the body from damage caused by free radicals. Free radicals are highly reactive molecules produced by cells during normal metabolism. If not neutralized, free radicals can accumulate and cause random damage to the DNA and proteins within cells.

Although it is not yet clear how the SOD1 gene mutation leads to motor neuron degeneration, researchers have theorized that an accumulation of free radicals may result from the faulty functioning of this gene. This theory has been supported in some animal studies.

Studies also have focused on the role of glutamate in motor neuron degeneration. Glutamate is one of the chemical messengers or neurotransmitters in the brain. Scientists have found that, compared to healthy people, ALS patients have higher levels of glutamate in the serum and spinal fluid. Lab studies have shown that neurons begin to die off when they are exposed over long periods to excessive amounts of glutamate.

Now, scientists are trying to understand what mechanisms lead to a buildup of unneeded glutamate in the spinal fluid and how this imbalance could contribute to the development of ALS.

Autoimmune responses—which occur when the body’s immune system attacks normal cells—have been suggested as one possible cause for motor neuron degeneration in ALS.

Some scientists theorize that antibodies may directly or indirectly impair the function of motor neurons, interfering with the transmission of signals between the brain and muscles.

In searching for the cause of ALS, researchers have also studied environmental factors such as exposure to toxic or infectious agents. Other research has examined the possible role of dietary deficiency or trauma. However, as of yet, there is insufficient evidence to implicate these factors as causes of ALS.

Future research may show that many factors, including a genetic predisposition, are involved in the development of ALS.

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The RASCALS Foundation is doing everything it can year-round to spread the message about Lou Gehrig’s disease. In reality, this is everybody’s disease—and there is so much more to do.

In addition to raising awareness, we also work to raise much-needed financial resources for the ALS community.

You can make a secure online donation via PayPal here, or mail your gift here:

RASCALS Foundation

P.O. Box 31834

St. Louis, MO 63131

How is your money used?

RESEARCH GRANTS

On your behalf, RASCALS has made annual contributions to ALS research centers so they can keep searching for answers and treatments.

The Neuromuscular and Clinical Neurophysiology Services Group of St. Louis University was a 2013 recipient.

HIGHER EDUCATION SCHOLARSHIPS

The financial burdens of ALS are as horrific as the disease itself. So each year we present college scholarships to members of families affected by ALS.

The scholarship awards are based in part on applicants’ original essays that address “How ALS Has Influenced My Life.”

RASCALS GIVES 100%

The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is an all-volunteer 501(c)(3) charity.

You can be sure that 100%  of every dollar that you donate  goes to building awareness, treatment research and development, plus ALS family assistance.

#

This is ALS Awareness Month. Please make it a point to tell someone about ALS, also known as Lou Gehrig’s disease.

Thank you for all you do.

ALS Awareness Facts: Day 20

Fact: There are forms of assistance available to ALS families

There is no way we can possibly detail all the rules and regulations of today’s diverse private insurers and confusing marketplace.

However, amyotrophic lateral sclerosis does qualify as a “compassionate allowance” with the Social Security Administration (SSA). Compassionate allowances are emotional and physical impairments regarded so serious that they obviously meet disability standards.

Compared to other disabilities and illnesses, receiving Social Security Disability Insurance (SSDI) for ALS is a much quicker process as long as there has been a definitive diagnosis.

There are restrictions, of course, if a person with ALS is working and earning more than a certain amount each month($1,010 is the last figure we heard).

Also if that person has not worked long enough to pay into the SSDI system, or if the diagnosis is not clearly documented.

If you are not eligible for SSDI because you have not worked in an SSDI job for a sufficient amount of time, you may apply for Supplemental Security Income (SSI). This is a cash benefit program that provides money for food, clothing and other basic needs.

Individuals with ALS can also qualify for “presumptive disability” under SSI. This means that they may be eligible to receive up to six months of SSI payments before the disability determination has been made by the SSA.

SSA will not consider the person’s education, age, past work or functional capacity when making the disability determination.

We strongly encourage you to explore the Social Security Website to get the all the latest information. Here is the ALS compassionate allowance info page.

The ALS Association (ALSA) also offers a guide to government benefits available to families battling ALS.

Note: SSA has an expedited procedure for processing terminal illness cases to ensure that a favorable decision can be made expeditiously. The code word for this type of case is “TERI” case. A person with ALS (particularly if advanced symptoms are present) may want to advise SSA, at the time of application, that TERI case procedures are appropriate.

A person who is denied benefits from Social Security has appeal rights with strict time limitations. Please consider referring to the A.C.C.E.S.S. program at 888-700-7010 for free representation or advice.

You may also contact The ALS Association’s Advocacy Department for potential congressional support at 877-444-ALSA (2572), or advocacy@alsa-national.org.  

Additional Resources:
Social Security Administration: 1-800-772-1213; www.ssa.gov
Medicare Information Line: 1-800-MEDICARE (1-800-633-4227); www.medicare.gov
Medicare Rights Center: 1-800-333-4114; www.medicarerights.org
Center for Medicare Advocacy: 1-800-846-7444; www.patientadvocacy.org

Please feel free to contact The ALS Association’s Care Services Department with questions at 800/782-4747, or 818/880-9007. You may also email us at alsinfo@national.org.

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The RASCALS Foundation is doing everything it can year-round to spread the message about Lou Gehrig’s disease. In reality, this is everybody’s disease—and there is so much more to do.

In addition to raising awareness, we also work to raise much-needed financial resources for the ALS community.

You can make a secure online donation via PayPal here, or mail your gift here:

RASCALS Foundation

P.O. Box 31834

St. Louis, MO 63131

How is your money used?

RESEARCH GRANTS

On your behalf, RASCALS has made annual contributions to ALS research centers so they can keep searching for answers and treatments.

The Neuromuscular and Clinical Neurophysiology Services Group of St. Louis University was a 2013 recipient.

HIGHER EDUCATION SCHOLARSHIPS

The financial burdens of ALS are as horrific as the disease itself. So each year we present college scholarships to members of families affected by ALS.

The scholarship awards are based in part on applicants’ original essays that address “How ALS Has Influenced My Life.”

RASCALS GIVES 100%

The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is an all-volunteer 501(c)(3) charity.

You can be sure that 100%  of every dollar that you donate  goes to building awareness, treatment research and development, plus ALS family assistance.

#

This is ALS Awareness Month. Please make it a point to tell someone about ALS, also known as Lou Gehrig’s disease.

Thank you for all you do.

 

 

ALS Awareness Facts: Day 19

Fact: Although life expectancy with ALS averages about 2-5 years from time of diagnosis, the disease is variable and many live with quality for 5 years and more

Of all patients, more than half live more than three years after diagnosis.

About twenty percent of people with ALS live 5 years or more.

Up to ten percent will survive more than 10 years.

Five percent will live 20 years.

There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.

It is estimated that ALS is responsible for nearly two deaths per hundred thousand populations annually.

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The RASCALS Foundation is doing everything it can year-round to spread the message about Lou Gehrig’s disease. In reality, this is everybody’s disease—and there is so much more to do.

In addition to raising awareness, we also work to raise much-needed financial resources for the ALS community.

You can make a secure online donation via PayPal here, or mail your gift here:

RASCALS Foundation

P.O. Box 31834

St. Louis, MO 63131

How is your money used?

RESEARCH GRANTS

On your behalf, RASCALS has made annual contributions to ALS research centers so they can keep searching for answers and treatments.

The Neuromuscular and Clinical Neurophysiology Services Group of St. Louis University was a 2013 recipient.

HIGHER EDUCATION SCHOLARSHIPS

The financial burdens of ALS are as horrific as the disease itself. So each year we present college scholarships to members of families affected by ALS.

The scholarship awards are based in part on applicants’ original essays that address “How ALS Has Influenced My Life.”

RASCALS GIVES 100%

The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is an all-volunteer 501(c)(3) charity.

You can be sure that 100%  of every dollar that you donate  goes to building awareness, treatment research and development, plus ALS family assistance.

#

This is ALS Awareness Month. Please make it a point to tell someone about ALS, also known as Lou Gehrig’s disease.

Thank you for all you do.

ALS Awareness Facts: Day 18

Fact: The financial burdens to families of persons with ALS is exceedingly high

There can be significant costs for medical care, equipment, and home health caregiving later as the disease progresses.

This does not include any alterations made to the patient family’s home to accommodate a wheel chair, or a special needs van essential for patient transportation.

It is critically important to be knowledgeable about your health plan coverage and other programs for which your may be eligible, including SSA, Medicare, Medical and Veteran Affairs benefits.

In the advanced stages, care can cost up to $200,000 a year. Entire savings can quickly be depleted because of the extraordinary cost involved in the care of ALS patients.

While great emphasis is put on securing funds to pursue treatments, please be generous when you find fundraising events that directly benefit PALS and their families.

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The RASCALS Foundation is doing everything it can year-round to spread the message about Lou Gehrig’s disease. In reality, this is everybody’s disease—and there is so much more to do.

In addition to raising awareness, we also work to raise much-needed financial resources for the ALS community.

You can make a secure online donation via PayPal here, or mail your gift here:

RASCALS Foundation

P.O. Box 31834

St. Louis, MO 63131

How is your money used?

RESEARCH GRANTS

On your behalf, RASCALS has made annual contributions to ALS research centers so they can keep searching for answers and treatments.

The Neuromuscular and Clinical Neurophysiology Services Group of St. Louis University was a 2013 recipient.

HIGHER EDUCATION SCHOLARSHIPS

The financial burdens of ALS are as horrific as the disease itself. So each year we present college scholarships to members of families affected by ALS.

The scholarship awards are based in part on applicants’ original essays that address “How ALS Has Influenced My Life.”

RASCALS GIVES 100%

The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is an all-volunteer 501(c)(3) charity.

You can be sure that 100%  of every dollar that you donate  goes to building awareness, treatment research and development, plus ALS family assistance.

#

This is ALS Awareness Month. Please make it a point to tell someone about ALS, also known as Lou Gehrig’s disease.

Thank you for all you do.

ALS Awareness Facts: Day 17

Fact: The relationship between ALS and head trauma is still being investigated

Recent studies suggest that there are other disorders brought on by concussion-like trauma that can erode the central nervous system in similar ways as ALS.

The studies involve former football players, boxers, and military veterans who have received diagnoses of ALS at rates significantly higher than the general population.

ALS often strikes people who are very active and in good physical condition, much like Lou Gehrig himself.

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The RASCALS Foundation is doing everything it can year-round to spread the message about Lou Gehrig’s disease. In reality, this is everybody’s disease—and there is so much more to do.

In addition to raising awareness, we also work to raise much-needed financial resources for the ALS community.

You can make a secure online donation via PayPal here, or mail your gift here:

RASCALS Foundation

P.O. Box 31834

St. Louis, MO 63131

How is your money used?

RESEARCH GRANTS

On your behalf, RASCALS has made annual contributions to ALS research centers so they can keep searching for answers and treatments.

The Neuromuscular and Clinical Neurophysiology Services Group of St. Louis University was a 2013 recipient.

HIGHER EDUCATION SCHOLARSHIPS

The financial burdens of ALS are as horrific as the disease itself. So each year we present college scholarships to members of families affected by ALS.

The scholarship awards are based in part on applicants’ original essays that address “How ALS Has Influenced My Life.”

RASCALS GIVES 100%

The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is an all-volunteer 501(c)(3) charity.

You can be sure that 100%  of every dollar that you donate  goes to building awareness, treatment research and development, plus ALS family assistance.

#

This is ALS Awareness Month. Please make it a point to tell someone about ALS, also known as Lou Gehrig’s disease.

Thank you for all you do.

ALS Awareness Facts: Day 16

Fact: there are three general classifications of ALS.

Sporadic is the most common form of ALS in the United States, making up 90-95% of all cases. It may affect anyone, anywhere. Patients do not have a family history of the disease, and their family members are not considered to be at increased risk for developing ALS.

Familial ALS (FALS) occurs more than once in a family lineage (genetic dominant inheritance). It accounts for a very small number of cases in the United States, approximately 5-10% of all cases.

In those families, there is a 50% chance each offspring will inherit the gene mutation and may develop the disease. The familial form of ALS usually results from a pattern of inheritance that requires only one parent to carry the gene responsible for the disease.

About 20% of all familial cases result from a specific genetic defect that leads to mutation of the enzyme known as superoxide dismutase 1 (SOD1). Research on this mutation is providing clues about the possible causes of motor neuron death in ALS. Not all familial ALS cases are due to the SOD1 mutation, therefore other unidentified genetic causes clearly exist.

Guamanian is an extremely high incidence of ALS that was observed in Guam and the Trust Territories of the Pacific in the 1950s.

There is also, however, a rare form called Juvenile ALS. The term has been used for patients with onset of disease prior to age 25 and those having a prolonged survival. Professor Stephen Hawking, the well-known physicist, was diagnosed with juvenile ALS when he was 21 years old.

Last year, scientific investigators  found affected individuals had two copies of a mutation of SIGMAR1 that affected the encoded protein, Sigma-1 receptor. findings emphasize the important role of Sigma-1 receptors in motor neuron function and disease.

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The RASCALS Foundation is doing everything it can year-round to spread the message about Lou Gehrig’s disease. In reality, this is everybody’s disease—and there is so much more to do.

In addition to raising awareness, we also work to raise much-needed financial resources for the ALS community.

You can make a secure online donation via PayPal here, or mail your gift here:

RASCALS Foundation

P.O. Box 31834

St. Louis, MO 63131

How is your money used?

RESEARCH GRANTS

On your behalf, RASCALS has made annual contributions to ALS research centers so they can keep searching for answers and treatments.

The Neuromuscular and Clinical Neurophysiology Services Group of St. Louis University was a 2013 recipient.

HIGHER EDUCATION SCHOLARSHIPS

The financial burdens of ALS are as horrific as the disease itself. So each year we present college scholarships to members of families affected by ALS.

The scholarship awards are based in part on applicants’ original essays that address “How ALS Has Influenced My Life.”

RASCALS GIVES 100%

The Robert A. Stehlin Campaign for ALS (R.A.S.C.A.L.S.) is an all-volunteer 501(c)(3) charity.

You can be sure that 100%  of every dollar that you donate  goes to building awareness, treatment research and development, plus ALS family assistance.

#

This is ALS Awareness Month. Please make it a point to tell someone about ALS, also known as Lou Gehrig’s disease.

Thank you for all you do.