se kädet vei ja jalat sekä kielen
ja hengityksen salpas kokonaan
vaan särkymättömäksi jätti mielen
ei tahtoa se saanut taipumaan

ALStuttu tapasi sosiaali- ja terveysministerin

Kirjoittanut Annarilla Ahtola

ALS-tutkimuksen tuki ry:n hallituksen edustajat tapasivat keskiviikkona 12.4.2017 sosiaali- ja terveysministeri Pirkko Mattilan (ps). Tapaamisessa keskusteltiin suomalaisten ALS-potilaiden tilanteesta sekä mahdollisuuksista kehittää ALS-potilaiden hoitokäytäntöjä, tutkimuksiin osallistumista ja ALSin tutkimista Suomessa.

Viimeksi muutettulauantai, 15 April 2017 09:37

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A Phase 2, randomized, double-blind, placebo-controlled, multicenter study to evaluate the efficacy and safety of pegcetacoplan in subjects with amyotrophic lateral sclerosis (ALS)
19/04/2024

EudraCT Number: 2019-003797-10Sponsor Protocol Number: APL2-ALS-206Sponsor Name: Apellis Pharmaceuticals, Inc.Start Date: 2021-04-06Medical condition: Amyotrophic Lateral Sclerosis Disease: Version: 21.1SOC Term: 10029205 - Nervous system disordersClassification Code: 10002026Term: Amyotrophic lateral sclerosisLevel: PTPopulation Age: Adults, ElderlyGender: Male, FemaleTrial Protocol: IE (Prematurely Ended), FR (Prematurely Ended), BE (Completed), DE (Prematurely Ended), CZ (Prematurely Ended), NL (Prematurely Ended), IT (Prematurely Ended)
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A Phase 2, multicenter, randomized, double-blind, placebo-controlled study to evaluate the efficacy and safety of SAR443820 in adult participants with amyotrophic lateral sclerosis, followed by an...
19/04/2024

EudraCT Number: 2021-004156-42Sponsor Protocol Number: ACT16970Sponsor Name: Sanofi-aventis recherche & développementStart Date: 2022-04-12Medical condition: Amyotrophic lateral sclerosisDisease: Version: 21.1SOC Term: 10029205 - Nervous system disordersClassification Code: 10002026Term: Amyotrophic lateral sclerosisLevel: PTPopulation Age: Adults, ElderlyGender: Male, FemaleTrial Protocol: SE (Completed), DE (Completed), IT (Ongoing), NL (Prematurely Ended), BE (Completed), ES (Prematurely Ended), FR (Temporarily Halted), PL (Prematurely Ended)
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A PHASE 2, RANDOMIZED, DOUBLE-BLIND, PLACEBO-CONTROLLED, PARALLEL STUDY TO ASSESS THE EFFICACY, SAFETY, TOLERABILITY, PK, AND BIOMARKER EFFECTS OF PTC857 IN ADULT SUBJECTS WITH AMYOTROPHIC LATERAL...
19/04/2024

EudraCT Number: 2021-006511-29Sponsor Protocol Number: PTC857-CNS-001-ALSSponsor Name: PTC Therapeutics, Inc.Start Date: 2022-08-26Medical condition: Amyotrophic Lateral Sclerosis (ALS)Disease: Version: 21.1SOC Term: 10029205 - Nervous system disordersClassification Code: 10002026Term: Amyotrophic lateral sclerosisLevel: PTPopulation Age: Adults, ElderlyGender: Male, FemaleTrial Protocol: FR (Trial now transitioned), DE (Ongoing), IT (Ongoing), ES (Ongoing), CZ (Trial now transitioned), PL (Ongoing), NL (Ongoing), NO (Ongoing), SE (Trial now transitioned)
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Integrity of blood-brain barrier depends on protein that is altered in some neurodegenerative diseases
13/03/2024

Defects in the blood vessel network of the central nervous system have been linked to early symptoms of neurodegenerative diseases such as Alzheimer's disease and amyotrophic lateral sclerosis (ALS). It is this complex vascular network that provides the necessary nutrients -- especially glucose and oxygen -- to activate all neuronal functions. A new study reveals that the TDP-43 protein is essential for forming a stable and mature blood vessel network in the central nervous system.
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Recreational activities such as golfing, gardening may be associated with increased ALS risk among men
13/03/2024

Participation in recreational activities -- including golfing, gardening or yard work, woodworking and hunting -- may be associated with an increase in a person's risk for developing ALS. Researchers found that golf was associated with three times greater risk for developing ALS among men. Participation in gardening or yard work, as well as woodworking and hunting, was also linked with a heightened risk for men.
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Cracking the code of neurodegeneration: New model identifies potential therapeutic target
22/02/2024

Scientists have developed an innovative neural cell culture model, shedding light on the intricate mechanisms underlying neurodegeneration. Their research pinpointed a misbehaving protein as a promising therapeutic target in the treatment of amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD).
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Pharmacological inhibitor protects nerve cells in ALS disease
08/02/2024

A new pharmacological inhibitor can intervene in a central cell death mechanism that is responsible for the death of motor neurons and hence important for the progression of the motor neuron disease amyotrophic lateral sclerosis (ALS). Neurobiologists examined a neuroprotective molecule that belongs to a novel drug class. It is able to inhibit the interactions of certain proteins and has been successfully tested in a mouse model of ALS and in brain organoids of ALS patients.
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ALS: Blocking inflammation to reduce symptoms
10/01/2024

In people with amyotrophic lateral sclerosis (ALS), changes in neurons appear to activate immune cells. Lowering the inflammation could reduce the symptoms of the disease, according to a new study.
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A molecular anchor
04/01/2024

Scientists identify ALS-linked protein VAP as a key stabilizer of mitochondria near dendritic spines to support memory formation. This finding opens new directions for research into cognitive and motor learning impairments in ALS.
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This is how protein aggregates can trigger neurodegenerative diseases
04/12/2023

Neurodegenerative diseases are characterized by the deposition of clumped proteins in the brain and progressive neuronal cell death. Although the causal link between protein aggregates and neurodegeneration is clear, it is still unclear in what way misfolded proteins trigger cell death. A team showed that misfolded prion proteins can inactivate the TDP-43 protein.
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New therapeutic strategy to reduce neuronal death in amyotrophic lateral sclerosis
16/11/2023

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that affects neurons in the brain and spinal cord causing loss of muscle control. Scientists have now suggested a potential therapeutic strategy to tackle this pathology that has no treatment to date. It is a molecular trap that prevents one of the most common genetic ALS-causing peptide compounds, the Poly-GR dipeptide, from causing its toxic effects in the body. The results show that this strategy reduces the death of neurons in patients and in an animal model (vinegar flies) of the disease.
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A promising drug candidate for ALS -- prolongs lifespan and eases symptoms in rats and mice
22/09/2023

A research group has found a promising drug candidate for the treatment of amyotrophic lateral sclerosis (ALS). Cerebral dopamine neurotrophic factor CDNF prolongs the lifespan of and alleviates disease symptoms in rats and mice in animal studies.
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