The following are pertinent references that may be helpful for doctors or patients suffering from Amyotrohic Lateral Sclerosis.  For links toinformative sites on the internet click on the following: AmyotrophicLateral Sclerosis - Internet Resources

Silani V, Fogh I, Ratti A, Sassone J, Ciammola A, Cova L.  Stem cellsin the treatment of amyotrophic lateral sclerosis (ALS). AmyotrophLateral Scler Other Motor Neuron Disord. 2002 Dec;3(4):173-81.
Department of Neurology, Laboratory of Neuroscience, Dino Ferrari Center,University of Milan Medical School, IRCCS Istituto Auxologico Italiano, ViaSpagnoletto 3, 1-20149 Milano, Italy. vincenzo@silani.com

Until fairly recently, interest in stem cells was restricted to neurobiologystudies on the principles of embryonic development. This situation has changedrapidly in the last few years when neuronal stems and precursors were isolatedin vitro, thus allowing expansion and controlled differentiation of selectivepopulations of neuronal cells. This theoretically unlimited reserve wouldthen supply specific cells for transplantation in diseases characterizedby widespread degeneration of selective cell populations as motor neuronsin Amyotrophic Lateral Sclerosis (ALS). The recent evidence of cell transdifferentiationhas further amplified the potential therapeutic use of stem cells. Stem celltechnology is at an early stage but the desperate need for a therapy in ALSpatients may legitimize clinical trials in absence of conclusive scientificevidence. This paper discusses the premises for stem cell therapy in ALS.


Wasner M, Klier H, Borasio GD.  The use of alternative medicine bypatients with amyotrophic lateral sclerosis. J Neurol Sci. 2001Oct 15;191(1-2):151-4.
Department of Neurology and Interdisciplinary Palliative Care Unit, LudwigMaximilians University, University Hospital, Grosshadern, D-81366, Munich,Germany.

The use of complementary and alternative medicine (CAM) is increasing inall industrialised countries, especially in patients with chronic and incurablediseases. However, no data are available on the use of CAM by patients withamyotrophic lateral sclerosis (ALS). The German Association for NeuromuscularDiseases (DGM) mailed out a questionnaire on CAM to 350 ALS patients, 171of whom completed and returned the survey (response rate 49%). The use ofCAM was reported by 92 patients (54%). There were no significant demographicdifferences between users and nonusers. The patients used 73 different methodsor substances; some tried up to 11 different treatments. The most widelyused methods were: acupuncture (47%), homeopathy (40%), naturopathy (24%)and esoteric treatments (20%). The lower the patients' expectations fromCAM, the better was the subjectively perceived effect. In most cases (60%),alternative treatments were performed by a physician. Patients spent on average4000 (approximately US$4500) on CAM, generally without reimbursement. CAMis most often used in addition to conventional treatments and may be partof the patients' coping strategy. Open communication between patients andphysicians is essential to warn the patients of medically or financiallyhazardous treatments. Future research should look at the possible palliativeeffects of CAM on symptom control and quality of life of patients and families.

 
Mazzini L, Balzarini C, Colombo R, Mora G, Pastore I, De Ambrogio R, CaligariM.  Effects of creatine supplementation on exercise performance andmuscular strength in amyotrophic lateral sclerosis: preliminary results.J Neurol Sci. 2001 Oct 15;191(1-2):139-44.
Department of Neurology, San Giovanni Bosco Hospital, Largo Donatore di sangue3, 10154, Torino, Italy. mazzini.l@libero.it
Creatine supplementation in humans has been reported to enhance power andstrength both in normal subjects and in patients with various neuromusculardiseases. The purpose of this study was to examine the effects of supplementationon exercise performance and maximal voluntary isometric muscular contraction(MVIC) in Amyotrophic Lateral Sclerosis (ALS) patients.We report the resultsobtained in 28 patients with probable/definite ALS. In each patient we acquiredthe dynamometric measurement of MVIC in 10 muscle groups of upper and lowerlimbs and a measure of fatigue by means of an high-intensity intermittentprotocol in elbow flexors and knee extensors muscles. All patients completedthe protocols at the baseline and after supplementation of 20 g per day for7 days and after supplementation of 3 g per day for 3 and 6 months. MVICincreased after 7 days of supplementation in 20 patients (70%) in knee extensorsand in 15 (53%) of them also in elbow flexors. A statistically significantdifference between pre and post-treatment mean values of MVIC was found bothin elbow flexors (P<0.05) and knee extensors (p<0.04). The analysisof the slopes of fatigue test showed a statistically significant improvementafter 7 days of supplementation in 11 patients (39%) in elbow flexors andin 9 patients (32%) also in knee extensors muscles. During the 6-month follow-upperiod all the examined parameters showed a linear progressive decline.Inconclusion, our preliminary results have demonstrated that supplementationtemporary increases maximal isometric power in ALS patients so it may beof potential benefit in situations such as high intensity activity and itcan be proposed as a symptomatic treatment.


Ferrante RJ, Klein AM, Dedeoglu A, Beal MF.  Therapeutic efficacy ofEGb761 (Gingko biloba extract) in a transgenic mouse model of amyotrophiclateral sclerosis. J Mol Neurosci. 2001 Aug;17(1):89-96.
Geriatric Research Education and Clinical Center, Bedford VA Medical Center,MA 01730, USA. rjferr@bu.edu
EGb761 is a standardized extract of green Gingko biloba, which exerts protectiveeffects against mitochondrial damage and oxidative stress. We examined whetheroral administration of 0.022% or 0.045% EGb761 in the diet could impart neuroprotectiveeffects in a transgenic mouse model (G93A) of amyotrophic lateral sclerosis(ALS). EGb761 significantly improved motor performance and survival, andprotected against a loss of spinal-cord anterior motor horn neurons in maleG93A mutant transgenic ALS mice, but not in littermate female mutant transgenemice. While EGb761 extended survival in littermate female G93A mice, significancewas not reached. EGb761, however, significantly improved weight loss in bothmale and female transgenic ALS mice. These findings provide evidence fora gender-specific neuroprotective effect of EGb761 in a transgenic modelof ALS and suggest that EGb761 may be a potential effective treatment inpatients with ALS.


Wang FC, De Pasqua V, Gerard P, Delwaide PJ.  Prognostic value ofdecremental responses to repetitive nerve stimulation in ALS patients.Neurology. 2001 Sep 11;57(5):897-9.
University Department of Physical Medicine and Rehabilitation, Hopital duSart Tilman, Belgium. fc.wang@chu.ulg.ac.be
Decrement of the thenar compound muscle action potentials (CMAP), after repetitivenerve stimulation (RNS) of the median nerve at 3 Hz, was evaluated in patientswith ALS before riluzole therapy. CMAP size as well as motor unit numberand size estimates were evaluated twice before and after 1 year of riluzoletherapy. The correlation between decrement and CMAP size reduction per yearwas highly significant (r = 0.77), but no relationship could be demonstratedbetween decrement and other variables. The authors thus propose that decrementafter RNS may be used as a predictor of further drop in CMAP size.
 

Carter GT, Rosen BS.  Marijuana in the management of amyotrophiclateral sclerosis. Am J Hosp Palliat Care. 2001 Jul-Aug;18(4):264-70.
Muscular Dystrophy Association (MDA), Neuromuscular Disease Clinic, Departmentof Rehabilitation Medicine, University of Washington School of Medicine,Seattle, Washington, USA.
Marijuana has been proposed as treatment for a widening spectrum of medicalconditions. Marijuana is a substance with many properties that may be applicableto the management of amyotrophic lateral sclerosis (ALS). These include analgesia,muscle relaxation, bronchodilation, saliva reduction, appetite stimulation,and sleep induction. In addition, marijuana has now been shown to have strongantioxidative and neuroprotective effects, which may prolong neuronal cellsurvival. In areas where it is legal to do so, marijuana should be consideredin the pharmacological management of ALS. Further investigation into theusefulness of marijuana in this setting is warranted.


Cottingham, J ;Maitland, J ;Integrating manual and movement therapy withphilosophical counseling for treatment of a patient with amyotrophic lateralsclerosis: a case study that explores the principles of holistic intervention Alternative Therapies In Health And Medicine. 2000  Mar ;6(2):128, 120-7
ABSTRACT: A patient (Travis) suffering from ALS received a holistic principle-basedprotocol that combined manual-movement techniques with philosophical counseling.After 4 sessions, he exhibited a remarkable improvement in head-neck alignment,balance/mobility, autonomic activity, and worldview for a 2-month span. Thesechanges occurred only after his worldview underwent a shift from a dualisticsplit of mind and body to a nondualistic orientation. After this 2-monthperiod of improvement, Travis' structural alignment and balance/mobilitysuddenly deteriorated rapidly. Yet, his enhanced worldview and autonomictone continued through a final follow-up taken 17 weeks after the initialevaluation.

 
Dal Bello-Haas V, Andrews-Hinders D, Bocian J, Mascha E, Wheeler T, MitsumotoH.  Spiritual well-being of the individual with amyotrophic lateralsclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000 Dec;1(5):337-41
Amyotrophic Lateral Sclerosis Association Center, Cleveland Clinic Foundation,Ohio 44195, USA. v.dalbello-haas@csuohio.edu
BACKGROUND: A study was conducted to: (1) establish the feasibility and reliabilityof the Spiritual Well-Being Scale (SWBS) and its religious (RWB) and existentialwell-being (EWB) subscales in a sample of individuals with ALS; (2) describethe spiritual and religious practices, and spiritual well-being in theseindividuals; and (3) examine the relationship between spiritual well-beingand quality of life. METHOD: A random sample of 60 individuals completedthe SWBS at the beginning and end of an ALS clinic visit. Subjects were classifiedinto early, middle or late stage of ALS, using vital capacity and total ALSFunctional Rating Scale scores. A subsample completed the Sickness ImpactProfile (SIP). RESULTS: The SWBS and its RWB and EWB subscales were foundto have high internal consistency and test-retest reliability. There wereno statistically significant differences in SWB, RWB or EWB scores amongthe three stages of ALS. RWB scores were significantly higher than EWB scoresoverall and within the middle and late stages. Strong negative correlationswere found between physical and psychosocial dimension SIP subscores andRWB scores, suggesting that religious well-being may impact quality of life,or vice versa.


Murphy PL, Albert SM, Weber CM, Del Bene ML, Rowland LP.  Impactof spirituality and religiousness on outcomes in patients with ALS. Neurology.2000 Nov 28;55(10):1581-4.
Biopsychology Subprogram, Hunter College, the Graduate School and UniversityCenter of the City of New York, NY, USA.
The Project of Death in America Study at Columbia Presbyterian Medical Centerenrolled 121 patients with ALS from 1996 through 1997, 46 of whom participatedin a study assessing the effects of religiousness and spirituality (attachmentto life, mental health, support group, health care proxy, and attitudes towarddeath) on outcomes (technology and death). Spirituality or religion influenceduse of percutaneous endoscopic gastrostomy, noninvasive assisted ventilation,tracheotomy, and attitudes toward the dying process.


Simmons Z, Bremer BA, Robbins RA, Walsh SM, Fischer S.  Quality oflife in ALS depends on factors other than strength and physical function.Neurology. 2000 Aug 8;55(3):388-92.
Division of Neurology, Pennsylvania State College of Medicine, Hershey 17033,USA. zsimmons@psu.edu
OBJECTIVES: To study patients with ALS to determine the following: 1) therelationship between physical function and quality of life (QOL); 2) theinstruments that best reflect patients' own ratings of QOL; and 3) whetherspiritual/religious factors play a role in determining QOL. METHODS: Theauthors prospectively studied 96 patients with ALS using several instruments,including the McGill Quality of Life (MQOL) instrument, the Idler Index ofReligiosity, the Sickness Impact Profile (SIP)/ALS-19, and several measuresof strength and physical function. RESULTS: QOL as assessed by patients (MQOLsingle item score) did not correlate with measures of physical function andstrength, but correlated with the total MQOL score (p < 0.0005), the psychologicaland existential subscores of MQOL (p < 0. 0005), the support subscoreof MQOL (p = 0.001), and the total Idler score (p = 0.001). In contrast,correlations between SIP/ALS-19 and these measures were not significant,although SIP/ALS-19 correlated with measures of physical function and strength.CONCLUSIONS: QOL, as assessed by the patient with ALS, does not correlatewith measures of strength and physical function, but appears to depend onpsychological and existential factors, and thus may be measured well by theMQOL scale. Spiritual factors and support systems appear to play roles aswell. SIP/ALS-19 is a good measure of physical function, but not of overallQOL.


Francis, K ;Bach, J ;DeLisa, J ;Evaluation and rehabilitation of patientswith adult motor neuron disease   Archives Of Physical MedicineAnd Rehabilitation. 1999  Aug; 80(8):  951-63
ABSTRACT: Adult motor neuron disease (amyotrophic lateral sclerosis [ALS])is a neurodegenerative disorder characterized by loss of motor neurons inthe cortex, brain stem, and spinal cord, manifested by upper and lower motorneuron signs and symptoms affecting bulbar, limb, and respiratory musculature.Clinically, the disease course is characterized by progressive weakness,atrophy, spasticity, dysarthria, dysphagia, and respiratory compromise, ultimatelyresulting in death or mechanical ventilation in the vast majority of patients.Patterns of presentation and pathological features of the disease, alongwith clinical and electrophysiologic criteria for diagnosis, are discussedin this review. Since 8% to 22% of patients survive more than 10 years withoutventilator use, meticulous medical and rehabilitation management is extremelyimportant to ensure optimal health and quality of life in these patients.Major issues in the care of individuals with ALS include weakness and spasticity,impairments in activities of daily living and mobility, communication deficitsand dysphagia in those with bulbar involvement, respiratory compromise, fatigueand sleep disorders, pain, and psychosocial distress. Research in ALS changesrapidly, but is currently focused on potential etiologic factors such asglutamate excitotoxicity, role of oxidative stress, autoimmunity to calciumchannels, and cytoskeletal abnormalities, as well as related treatment initiativesincluding glutamate modulators, neurotrophic factors, antioxidants, antiapoptoticfactors, and gene therapy. Recently, mutations in the gene encoding Cu/Znsuperoxide dismutase were identified in a subset of familial ALS patients.Riluzole, a glutamate antagonist and Na-channel blocker, became the onlydrug currently approved for treatment of ALS after studies showed a smallpositive effect on survival. Until a definitive treatment or cure for ALSis found, the multifaceted rehabilitation team approach remains the besthope for improving health and survival in this devastating illness.



Finsterer, J ;Mamoli, B ;Liquorpheresis (CSF filtration) in familial amyotrophiclateral sclerosis  Spinal Cord. 1999 Aug; 37(8):  592-3
ABSTRACT: OBJECTIVES: Liquorpheresis (CSF filtration) has been shown to beof benefit in various neurologic disorders, including sporadic ALS. Liquorpheresisin patients with familial ALS, has not been investigated so far. METHODS:A 52-year-old woman with familial ALS is reported who underwent liquorpheresisduring 4 consecutive days. During this period, 875 ml CSF were filtered offvia an intrathecal catheter and a combined mechanical and ionic filter bymeans of a bi-directional syringe pump. RESULTS: Immediately after treatmentand 2 weeks later there was subjective, but no objective, improvement ofher symptoms, assessed by the Norris score and measurements of the elbowextension, vital capacity, F-waves of both ulnar nerves and automatic EMGof the right brachial biceps and anterior tibial muscles. CONCLUSION: Liquorpheresisdoes not seem to be helpful in the treatment of familial ALS.


Cruz Martinez A, Trejo JM.   Transcranial magnetic stimulationin amyotrophic and primary lateral sclerosis. Electromyogr Clin Neurophysiol.1999 Jul-Aug;39(5):285-8.
Unidad de Electromiografia, Hospital La Luz, Madrid, Spain.
Conduction of the central motor pathways after transcranial magnetic stimulation(TMS) was investigated in 7 patients with amyotrophic lateral sclerosis (ALS)and 1 case with primary lateral sclerosis (PLS). Threshold intensity, centralmotor conduction time (CMCT) and amplitude of the motor evoked potentials(MEPs) were evaluated. Threshold was abnormal in 85% of tested limbs, andCMCT prolonged and amplitude of the MEPs attenuated in 28.5% of patientswith ALS. Abnormal CMCT was asymmetric and related to clinical score. MEPswere absent in lower limbs in PLS, with prolonged or attenuated amplitudeof the MEPs in upper limbs. EMG showed widespread signs of lower motor neuroninvolvement in ALS, but not in PLS. Cranial MRI showed frontoparietal corticalatrophy, more marked in pre-central gyrus, and SPECT there was lower traceruptake in the perirolandic area in the PLS patient. EMG examination, TMS,cranial MRI and SPECT can help in the diagnosis of PLS.


Apostolski, S ;Marinkovic, Z ;Nikolic, A ;Glutathione Peroxidase in AmyotrophicLateral Sclerosis: The Effects of Selenium Supplementation  Journal Of Environmental Pathology, Toxicology... 1998;  17(3-4):325-9
ABSTRACT: The activity of glutathione peroxidase (GSH-Px) as well as theactivities of other antioxidative enzymes: CuZn superoxide dismutase (CuZnSOD), catalase (CAT), glutathione reductase (GR) in erythrocytes, as wellas the activity of plasma glutathione transferase (GST), and the plasma contentof vitamins E and C were evaluated in 35 sporadic amyotrophic lateral sclerosis(sALS) patients.  The results revealed significantly decreased activityof both GSH-Px and CuZn SOD in ALS patients exists not only in motoneuronsbut also in the blood.  The effect of exogenously administered selenium(Se), antioxidants, amino acids, a Ca2+ channel blocker such as nimodipine,and their combination in Alsamin was evaluated by screening parameter levelsafter 9 weeks of treatment.  Only the use of all components togetherenhanced the activity of GSH-Px and the amount of vitamin E in sALS patients. Judging by the results of clinical trials, this treatment slowed the courseof the disease.


Neatherlin JS.  Management of amyotrophic lateral sclerosis withriluzole. J Neurosci Nurs. 1998 Aug;30(4):257-60.
Baylor University School of Nursing, Dallas, Texas 75243, USA.

In summary, riluzole is a recently-released drug for the treatment of ALS.While it will not cure the disease, it does prolong survival time and ventilator-freetime. Riluzole has few adverse effects, but liver enzymes should be watchedclosely for elevations.

 
 Silani V, Kasarskis EJ, Yanagisawa N.  Nutritional managementin amyotrophic lateral sclerosis: a worldwide perspective. J Neurol.1998 Aug;245 Suppl 2:S13-9; discussion S29.
Institute of Neurology, University of Milan Medical School and IRCCS MaggioreHospital, Milano, Italy. Vincenzo.Silani@venere.inet.it
Although respiratory failure is the primary cause of death in patients withamyotrophic lateral sclerosis (ALS), the management of nutritional statusis important to enhancing the quality of life and optimising the timing ofinterventive techniques. Progressively weakening muscles impair the patient'sability to eat, and nearly all patients with ALS develop severe dysphagia.If nutritional support is not provided, food and fluid consumption may begreatly restricted, leading to weight loss and malnutrition. This may becompounded by impaired respiratory functions, which place increased energydemands on the patient. This paper describes the nutritional needs of ALSpatients from a worldwide and cross-cultural perspective. In particular,the differences between a paternalistic and a patient-centred approach totreatment are addressed. The need for further study into the nutritionalstatus of ALS patients and the issue of parenteral and enteral nutritionaltherapy, particularly percutaneous endoscopic gastrostomy, are discussed.


Apostolski S, Marinkovic Z, Nikolic A, Blagojevic D, Spasic MB, MichelsonAM.  Glutathione peroxidase in amyotrophic lateral sclerosis: theeffects of selenium supplementation. J Environ Pathol Toxicol Oncol.1998;17(3-4):325-9.
Institute of Neurology, School of Medicine, University of Belgrade, Yugoslavia.
The activity of glutathione peroxidase (GSH-Px) as well as the activitiesof other antioxidative enzymes: CuZn superoxide dismutase (CuZn SOD), catalase(CAT), glutathione reductase (GR) in erythrocytes, as well as the activityof plasma glutathione transferase (GST), and the plasma content of vitaminsE and C were evaluated in 35 sporadic amyotrophic lateral sclerosis (sALS)patients. The results revealed significantly decreased activity of both GSH-Pxand CuZn SOD in sALS patients compared with the control. These data showedthat a disturbed oxidative/antioxidative balance in sALS patients existsnot only in motoneurons but also in the blood. The effect of exogenouslyadministered selenium (Se), antioxidants, amino acids, a Ca2+ channel blockersuch as nimodipine, and their combination in Alsamin was evaluated by screeningparameter levels after 9 weeks of treatment. Only the use of all componentstogether enhanced the activity of GSH-Px and the amount of vitamin E in sALSpatients. Judging by the results of clinical trials, this treatment slowedthe course of the disease.


Aleksiev, A. ;Longitudinal Comparative Study on the Outcome of InpatientTreatment of Low Back Pain With Manual Therapy vs. Physical Therapy Journal Of Orthopaedic Medicine. 1995; 17(1):  10-4
ABSTRACT: The effect of manual therapy (postisometric relaxation) versustherapy on the outcome in hospitalised patients with low back pain (n=95)was analysed before and after the first and last procedure and at one yearfollow-up. The patients wre randomly assigned to one of 4 groups. The firstgroup (n=29) was treated by postisometric muscle relaxation (PR) of the lowback muscles and iliopsoas. The second group (n=21) received average frequencysinuous modulated current therapy (AFSMC) and sham mobilisation of the spine.The third group (n=26) was treated by Perl's traction therapy (PIT) and shammobilisation of the spine as well. The fourth group (n=19) received onlysham mobilisation of the spine and non-steroidal anti-inflammatory drugs(NSAID) in case of need. The duration of the treatment was 20 days comprising12 procedures for the therapeutic groups and 12 sham mobilisations for thecontrol group (CO). Physical measurements consisted of self-assessment ofthe pain (visual analogue scale), lumbar spinal mobility, trunk muscle strengthand integrated myoelectric activity of the low back muscles. Only the PRgroup showed significant improvement after the first procedure. At the endof the therapeutic course, each of the treatment groups had better resultsthan the CO (p<0.05), although the results were comparatively better forthe PR group than the AFSMC and PTT groups. At one year follow-up, the resultswere significantly better in the PR group in comparison with the rest ofthe groups. It could be concluded that PR possesses advantages not only atthe beginning of the treatment, but als has a long-term beneficial effecton physical measurements.


Nishida CR, Gralla EB, Valentine JS.  Characterization of three yeastcopper-zinc superoxide dismutase mutants analogous to those coded for infamilial amyotrophic lateral sclerosis. Proc Natl Acad Sci U S A.1994 Oct 11;91(21):9906-10.
Department of Chemistry and Biochemistry, University of California, Los Angeles90024.
Sequences encoding three copper-zinc superoxide dismutase (CuZnSOD) mutantproteins analogous to those coded for in familial amyotrophic lateral sclerosis(fALS) were constructed in the Saccharomyces cerevisiae CuZnSOD gene andexpressed in yeast lacking CuZnSOD (sod1-). Gly85-->Arg CuZnSOD failed to rescue the oxygen-sensitive phenotype of sod1- yeast, but Gly93-->AlaCuZnSOD and Lys100-->Gly CuZnSOD were apparently fully functional in vivo.The Gly85-->Arg mutant protein was purified and its metal-binding propertiesand SOD activity were found to be significantly altered relative to wildtype. The Gly93-->Ala CuZnSOD was likewise purified but, in contrast,demonstrated metal-binding comparable to wild type and activity 80% thatof wild type. These results suggest that SOD activity of human fALS mutantCuZnSODs may vary considerably in vivo, with at least some of them retaininga considerable amount of activity. Alternative theories to increased free-radicaldamage should be considered in attempting to explain fALS.


Amyotrophic Lateral Sclerosis: A Comprehensive Rehabilitation Approach Archives Of Physical Medicine And Rehabilitation. 1983; 64(7): 304-7
ABSTRACT: A clinic was established at The Mount Sinai Medical Center [NewYork, and staffed by a multidisciplinary team to assess the feasibility ofcaring for the patient with amyotrophic lateral sclerosis (ALS) through anoutpatient facility. ALS patients (300) were evaluated and followed in a3-yr period. Each patient was viewed as an individual, and the establishmentof 4 clinical neurologic scales (or stages) proved helpful in tracking decliningfunctional performance and in the establishment of suggestions for care.A rehabilitation program can be more effective in helping the ALS patientmaximize functional abilities while minimizing disabilities and complicationsat every stage of the disease. Such a program can be implemented throughan outpatient clinic with regularly scheduled follow-up visits.



Amyotrophic Lateral Sclerosis - Internet Resources

Information Sites
http://www.alsa.org/

http://www.lougehrigsdisease.net/

http://www.wfnals.org/



ALS Productsand Services



Internet Resources

ALS Infobahn
www.kylehahn.com

ALS Links.com
http://www.alslinks.com

ALS Network
http://www.alsnetwork.com

ALS - A Beginners Manual
http://www.alscecilneth.net

ALS Society of Canada
http://www.als.ca

ALS Survival Guide
http://www.alssurvivalguide.com

Angelo Sciulli Nature Photography
Using photography to promote awareness of ALS
www.scnature.com

Communication Independence for the Neurologically Impaired
http://www.cini.org

Focus on ALS
http://www.focusonals.com

Les Turner Amyotrophic Lateral Sclerosis Foundation, Ltd. www.lesturnerals.org

Healthpedia
http://www.healthopedia.com/amyotrophic-lateral-sclerosis/

March of Faces
www.march-of-faces.org

New Hopes and Challenges: A manual for patients, families, and friends http://www.alsa.org/als/newhopes.cfm

Steve & Dee's ALS/MND Web Site
http://www.steveholly.com

Steve Weekes ALS Website
http://www.geocities.com/sweekes99/ALStitle.html

The ALS Digest
This e-mail list has been set up to serve the world-wide ALS community. That is, ALS patients, ALS researchers, ALS support/discussion groups, ALSclinics, etc.  Others are welcome (and invited) to join.  The ALSDigest is published (approximately) weekly.

To subscribe, to unsubscribe, to contribute notes, etc. to ALS Digest, pleasesend an e-mail to: bro@huey.met.fsu.edu(Bob Broedel).  Sorry, but this is not a LISTSERV set up.
Bob Broedel, PO Box 20049, Tallahassee, FL 32316 USA



Internet Resources: Caregiving

Family Caregiver Alliance
http://www.caregiver.org

National Alliance for Caregiving
http://www.caregiving.org

National Family Caregivers Association
http://www.nfcacares.org

National Partnership for Women and Families
http://www.nationalpartnership.org

Today's Caregiver Magazine On-Line
http://www.caregiver.com

Well Spouse Foundation
http://www.wellspouse.org



Internet Resources: Clinical Research

ALS Mutation Database
http://www.alsod.org/

ALS Patient Care Database
http://www.outcomes.org/als/

ALS Therapy Development Foundation
www.als-tdf.org

American Society of Human Genetics
http://www.faseb.org/genetics/ashg/

Dana Brain Web
http://www.dana.org/brainweb

The Eleanor and Lou Gehrig MDA/ALS Center
http://www.ColumbiaALS.org

Eleanor Roosevelt Institute
http://www-eri.uchsc.edu/

Kessler Patient Services
http://www.kessler-rehab.com

Massachusetts General Hospital
http://www.mgh.harvard.edu

McKnight Endowment Fund for Neuroscience
http://www.mcknight.org

The Robert Packard Center for ALS Research
www.alscenter.org

University of Miami ALS Clinic and Research Center
http://www.miami-als.org



Internet Resources: Government Agencies

Center for Disease Control and Prevention
http://www.cdc.gov

Family and Medical Leave Act
http://www.dol.gov/

Health Care Financing Administration
http://www.hcfa.gov

Healthfinder
www.healthfinder.gov

MEDLINEplus
www.medlineplus.gov

National Center for Biotechnology Information
http://www.ncbi.nlm.nih.gov

National Center for Complementary & Alternative Medicine
http://www.nccam.nih.gov

National Institute of Health (NIH)
http://www.nih.gov

National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov

National Institute on Deafness & Other Communications Disorders
http://www.nidcd.nih.gov

Social Security On-Line
http://www.ssa.gov/

Benefits Check Up by National Council on the Aging
http://www.benefitscheckup.org/


Internet Resources: Health & Medical

Accordant Health Services, Inc.
http://www.accordant.com

Bon Secours Richmond Health System
http://www.americasdoctor.com

Christopher and Dana Reeve Paralysis Resource Foundation
www.paralysis.org

Christopher Reeve Paralysis Foundation
www.crpf.org

Discovery Communications
http://www.discoveryhealth.com

Dr. Koop
http://www.drkoop.com

"Healthway Online, Inc."
http://www.healthanswers.com

HMS Beagle, The BioMedNet Magazine
www.hmsbeagle.com

Medinex
www.medinex.com

Neurology Channel
www.NeurologyChannel.com™


Internet Resources: International Organizations

International Alliance of ALS/MND Associations on the Internet
http://alsmndalliance.org

International Organizations, Motor Neuron Disease Association (UK)
http://www.mndassociation.org


Internet Resources: Palliative & Grieving

Partnership for Caring
www.partnershipforcaring.org

GriefNet
http://www.griefnet.org

Journey of Hearts
http://www.kirstimd.com

Last Acts
http://www.lastacts.org

Living Lessons
http://www.living-lessons.org

Promoting Excellence in End-of-life Care
www.promotingexcellence.org


Internet Resources: Professional Trade & Advocacy Agencies

American Academy of Family Physicians
http://www.aafp.org

American Academy of Neurology
http://www.aan.com

American Association of Neuroscience Nurses
http://www.aan.com

American Association of Retired Persons
http://www.aarp.org

American College of Chest Physicians
http://www.chestnet.org

American Hospital Association
http://www.aha.org

American Speech-Language Hearing Association
http://www.asha.org

Homecare On-Line
http://www.nahc.org

The Institute on Independent Living
www.independentliving.org

National Viatical Association
http://www.nationalviatical.org

Paralyzed Veterans of America
http://www.pva.org

World Federation of Neurology
http://www.wfnals.org