135-473: The Ice Bucket Challenge , sometimes called the ALS Ice Bucket Challenge , was an activity involving the pouring of a bucket of ice water over a person's head, either by another person or self-administered, to promote awareness of the disease amyotrophic lateral sclerosis (ALS, also known as motor neuron disease or Lou Gehrig 's disease) and encourage donations to research. The challenge
270-587: A viral social media campaign. Quinn was born on February 10, 1983, in Yonkers, New York , to Rosemary and Patrick Quinn Sr. He went to Iona College in New Rochelle, New York , where he was part of the rugby team. He was diagnosed with the amyotrophic lateral sclerosis disease (also known as motor neuron disease and in the U.S. as Lou Gehrig 's disease) on March 8, 2013, a month after his 30th birthday. Along with fellow ALS activist and captain of
405-481: A 20% change in the slope of the ALSFRS-R as being clinically meaningful, which is the most common threshold used to determine whether a new treatment is working in clinical trials. Difficulties with chewing and swallowing make eating very difficult ( dysphagia ) and increase the risk of choking or of aspirating food into the lungs. In later stages of the disorder, aspiration pneumonia can develop, and maintaining
540-532: A bucket of ice water poured on their heads and then nominating others to do the same. A common stipulation is that nominated participants have 24 hours to comply or forfeit by way of a charitable financial donation. On August 1, 2015, a group of ALS organizations in the United States, including the ALS Association , Les Turner ALS Foundation , and ALS Therapy Development Institute , re-introduced
675-492: A bulbar onset have a worse prognosis than limb-onset ALS; a population-based study found that bulbar-onset ALS patients had a median survival of 2.0 years and a 10-year survival rate of 3%, while limb-onset ALS patients had a median survival of 2.6 years and a 10-year survival rate of 13%. Those with respiratory-onset ALS had a shorter median survival of 1.4 years and 0% survival at 10 years. While astrophysicist Stephen Hawking lived for 55 more years following his diagnosis, his
810-472: A common disease spectrum (ALS–FTD) because of genetic, clinical, and pathological similarities. Genetically, repeat expansions in the C9orf72 gene account for about 40% of genetic ALS and 25% of genetic FTD. Cognitive and behavioral issues are associated with poorer prognosis as they may reduce adherence to medical advice, and deficits in empathy and social cognition which may increase caregiver burden. It
945-430: A definitive diagnosis of PLS cannot be made until several years have passed. PLS has a better prognosis than classical ALS, as it progresses slower, results in less functional decline, does not affect the ability to breathe, and causes less severe weight loss than classical ALS. Progressive muscular atrophy (PMA) is another subtype that accounts for about 5% of the overall ALS category and affects lower motor neurons in
1080-444: A disease, ALS itself can be classified in a few different ways: by which part of the motor neurons are affected; by the parts of the body first affected; whether it is genetic; and the age at which it started. Each individual diagnosed with the condition will sit at a unique place at the intersection of these complex and overlapping subtypes, which presents a challenge to diagnosis, understanding, and prognosis. ALS can be classified by
1215-439: A family member with ALS, Anthony Senerchia." Next, Kennedy nominated Senerchia's wife. Soon, news of the stunt traveled to Pat Quinn , of Yonkers, NY, according to "Visions". Within two weeks, word then reached Quinn's friend Pete Frates and he took the challenge, making him the fourth person to complete the challenge for ALS. During a Boston TV interview on September 2, 2019, Frates' father implied that his family knew so much about
1350-403: A genetic cause, often linked to a family history of the disease , and these are known as familial ALS (hereditary). About half of these genetic cases are due to disease-causing variants in one of four specific genes . The diagnosis is based on a person's signs and symptoms , with testing conducted to rule out other potential causes. There is no known cure for ALS. The goal of treatment
1485-424: A healthy weight can become a significant problem that may require the insertion of a feeding tube. As the diaphragm and intercostal muscles of the rib cage that support breathing weaken, measures of lung function such as vital capacity and inspiratory pressure diminish. In respiratory-onset ALS, this may occur before significant limb weakness is apparent. Individuals affected by the disorder may ultimately lose
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#17327911724321620-504: A new UK record of 248 people was set. TV presenter Eamonn Holmes performed the challenge in early October on This Morning after announcing he would do so while hosting the Pride of Britain Awards a few days earlier. By early October, it was reported that the 2015 challenge had raised $ 500,000 as compared with the $ 115 million raised by the 2014 challenge. The final figure was reported by
1755-467: A number of ALS genes that encode for RNA-binding proteins. The first to be discovered was TDP-43 protein, a nuclear protein that aggregates in the cytoplasm of motor neurons in almost all cases of ALS; however, mutations in TARDBP , the gene that codes for TDP-43, are a rare cause of ALS. FUS codes for FUS, another RNA-binding protein with a similar function to TDP-43, which can cause ALS when mutated. It
1890-510: A physician suspects the person may have a myopathy rather than ALS, a muscle biopsy may be performed. A number of infectious diseases can sometimes cause ALS-like symptoms, including human immunodeficiency virus ( HIV ), human T-lymphotropic virus (HTLV), Lyme disease , and syphilis . Neurological disorders such as multiple sclerosis, post-polio syndrome , multifocal motor neuropathy , CIDP , spinal muscular atrophy , and spinal and bulbar muscular atrophy can also mimic certain aspects of
2025-464: A predominantly upper motor neuron phenotype. Emotional lability is a symptom in which patients cry, smile, yawn, or laugh, either in the absence of emotional stimuli, or when they are feeling the opposite emotion to that being expressed; it is experienced by about half of ALS patients and is more common in those with bulbar-onset ALS. While relatively benign relative to other symptoms, it can cause increased stigma and social isolation as people around
2160-463: A rapid worsening of symptoms. Sudden death or acute respiratory distress are uncommon. Access to palliative care is recommended from an early stage to explore options, ensure psychosocial support for the patient and caregivers, and to discuss advance healthcare directives . As with cancer staging , ALS has staging systems numbered between 1 and 4 that are used for research purposes in clinical trials. Two very similar staging systems emerged around
2295-525: A similar time, the King's staging system and Milano-Torino (MiToS) functional staging. 2B: Involvement of the second region 4B: Need for non-invasive ventilation 4B: 30.3 months Providing individual patients with a precise prognosis is not currently possible, though research is underway to provide statistical models on the basis of prognostic factors including age at onset, progression rate, site of onset, and presence of frontotemporal dementia . Those with
2430-436: A single region for at least a year; they progress more slowly than classical ALS and are associated with longer survival. These regional variants of ALS can only be considered as a diagnosis should the initial symptoms fail to spread to other spinal cord regions for an extended period of time (at least 12 months). Flail arm syndrome is characterized by lower motor neuron damage affecting the arm muscles, typically starting with
2565-573: A small percentage of people have a much slower progression, on average people with ALS lose about 1 ALSFRS-R point per month. Brief periods of stabilization ("plateaus") and even small reversals in ALSFRS-R score are not uncommon, due to the fact the tool is subjective, can be affected by medication, and different forms of compensation for changes in function. However, it is rare (<1%) for these improvements to be large (i.e. greater than 4 ALSFRS-R points) or sustained (i.e. greater than 12 months). A survey-based study among clinicians showed that they rated
2700-477: A smaller family, older generations dying earlier of causes other than ALS, genetic non-paternity , and uncertainty over whether certain neuropsychiatric conditions (e.g. frontotemporal dementia , other forms of dementia , suicide, psychosis, schizophrenia ) should be considered significant when determining a family history. There have been calls in the research community to routinely counsel and test all diagnosed ALS patients for familial ALS, particularly as there
2835-546: A trivial activity for more genuine involvement in charitable activities. Writing in The Daily Telegraph , Willard Foxton described the challenge as "a middle-class wet T-shirt contest for armchair clicktivists", and the Evening Standard Magazine said that "it has become less about raising funds and all about showing off your star-pulling power". On August 28, 2014, it was reported that
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#17327911724322970-657: A variation on the challenge, jumping feet first into ice water. "Michael's Story" was a campaign poster from the UK MND Association's summer 2015 "Last Summer" first anniversary campaign which featured Michael Smith. He had not taken part in the Ice Bucket Challenge and was subsequently diagnosed with motor neurone disease. This caused controversy, with some critics saying that the poster was implying that Smith had deserved his illness for his previous non-participation. The claims were strongly refuted by
3105-424: A video of themselves in continuous footage. First, they are to announce their acceptance of the challenge, followed by pouring ice into a bucket of water. Then, the bucket is to be lifted and poured over the participant's head. Then the participant can nominate a minimum of three other people to participate in the challenge. Whether people choose to donate, perform the challenge, or do both varies. In one version of
3240-435: A video on YouTube participating in the "Cold Water Challenge" with fire hoses. Participating members of the department were subsequently punished for using fire department equipment without permission. Soon after, the challenge was brought to mainstream audiences when television anchor Matt Lauer did what was called "the Ice Bucket Challenge" on July 15, 2014, on NBC 's The Today Show at Greg Norman 's challenge. Lauer
3375-408: Is a symptom experienced by most people with ALS caused by reduced mobility. Symptoms of lower motor neuron degeneration include muscle weakness and atrophy, muscle cramps, and fleeting twitches of muscles that can be seen under the skin ( fasciculations ). Although the initial site of symptoms and subsequent rate of disability progression vary from person to person, the initially affected body region
3510-443: Is already doing ALS research and is therefore inflating their already-high profits. Storm went on to comment that it would be better to actually help someone with ALS and donate money directly to ALS patients. The ALS Association responded to similar criticisms by saying that 79% of their annual budget went toward programs in the past year. Members of the pro-life movement , such as Lila Rose of Live Action , criticised donations to
3645-527: Is just one of several ALS-related charities that have benefited from the challenge: While the Ice Bucket Challenge raised much in donations, studies show that the majority of participants did not actually donate. In the UK , one in every six people participated, but only ten percent of the participants donated, according to the Charities Aid Foundation . The percentage was higher in the U.S., but
3780-575: Is more likely to be genetic in origin than adult-onset ALS; the most common genes associated with juvenile ALS are FUS , ALS2 , and SETX . Although most people with juvenile ALS live longer than those with adult-onset ALS, some of them have specific mutations in FUS and SOD1 that are associated with a poor prognosis. Late onset (after age 65) is generally associated with a more rapid functional decline and shorter survival. The disorder causes muscle weakness, atrophy , and muscle spasms throughout
3915-657: Is not known what causes sporadic ALS, hence it is described as an idiopathic disease . Though its exact cause is unknown, genetic and environmental factors are thought to be of roughly equal importance. The genetic factors are better understood than the environmental factors; no specific environmental factor has been definitively shown to cause ALS. A multi-step liability threshold model for ALS proposes that cellular damage accumulates over time due to genetic factors present at birth and exposure to environmental risks throughout life. ALS can strike at any age, but its likelihood increases with age. Most people who develop ALS are between
4050-631: Is now a licensed gene therapy ( tofersen ) specifically targeted to carriers of SOD-1 ALS. A shortage of genetic counselors and limited clinical capacity to see such at-risk individuals makes this challenging in practice, as does the unequal access to genetic testing around the world. More than 40 genes have been associated with ALS, of which four account for nearly half of familial cases, and around 5% of sporadic cases: C9orf72 (40% of familial cases, 7% sporadic), SOD1 (12% of familial cases, 1–2% sporadic), FUS (4% of familial cases, 1% sporadic), and TARDBP (4% of familial cases, 1% sporadic), with
4185-412: Is often feasible, albeit slow, and needs may change over time. Despite these challenges, many people in an advanced state of disease report satisfactory wellbeing and quality of life. Although respiratory support using non-invasive ventilation can ease problems with breathing and prolong survival, it does not affect the progression rate of ALS. Most people with ALS die between two and four years after
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4320-532: Is often marked by walking with a " dropped foot " that drags gently on the ground. If the arms are affected first, they may experience difficulty with tasks requiring manual dexterity, such as buttoning a shirt, writing, or turning a key in a lock. In bulbar-onset ALS, the first symptoms are difficulty speaking or swallowing. Speech may become slurred, nasal in character, or quieter. There may be difficulty with swallowing and loss of tongue mobility. A smaller proportion of people experience "respiratory-onset" ALS, where
4455-495: Is respiratory-onset, in which the initial symptoms are difficulty breathing ( dyspnea ) upon exertion, at rest, or while lying flat ( orthopnea ). Primary lateral sclerosis (PLS) is a subtype of the overall ALS category which accounts for about 5% of all cases and only affects the upper motor neurons in the arms, legs, and bulbar region. However, more than 75% of people with apparent PLS go on to later develop lower motor neuron signs within four years of symptom onset, meaning that
4590-450: Is the main transporter that removes glutamate from the synapse; this leads to increased synaptic glutamate levels and excitotoxicity. Riluzole , a drug that modestly prolongs survival in ALS, inhibits glutamate release from pre-synaptic neurons; however, it is unclear if this mechanism is responsible for its therapeutic effect. No single test can provide a definite diagnosis of ALS. Instead,
4725-473: Is the most common form of the motor neuron diseases . ALS often presents in its early stages with gradual muscle stiffness , twitches , weakness , and wasting . Motor neuron loss typically continues until the abilities to eat, speak, move, and, lastly, breathe are all lost. While only 15% of people with ALS also fully develop frontotemporal dementia , an estimated 50% face at least some minor difficulties with thinking and behavior . Depending on which of
4860-424: Is thought that misfolded mutant SOD1 can cause misfolding and aggregation of wild-type SOD1 in neighboring neurons in a prion-like manner. Other protein degradation genes that can cause ALS when mutated include VCP , OPTN , TBK1 , and SQSTM1 . Three genes implicated in ALS that are important for maintaining the cytoskeleton and for axonal transport include DCTN1 , PFN1 , and TUBA4A . There are
4995-403: Is thought that mutations in TARDBP and FUS increase the binding affinity of the low-complexity domain, causing their respective proteins to aggregate in the cytoplasm. Once these mutant RNA-binding proteins are misfolded and aggregated, they may be able to misfold normal proteins both within and between cells in a prion-like manner. This also leads to decreased levels of RNA-binding protein in
5130-429: Is thought to account for 10–15% of cases overall and can include monogenic , oligogenic , and polygenic modes of inheritance. There is considerable variation among clinicians on how to approach genetic testing in ALS, and only about half discuss the possibility of genetic inheritance with their patients, particularly if there is no discernible family history of the disease. In the past, genetic counseling and testing
5265-498: Is to slow the disease progression, and improve symptoms. FDA approved treatments that slow the progression of ALS include riluzole and edaravone . Non-invasive ventilation may result in both improved quality, and length of life. Mechanical ventilation can prolong survival but does not stop disease progression. A feeding tube may help maintain weight and nutrition. Death is usually caused by respiratory failure. The disease can affect people of any age, but usually starts around
5400-431: Is usually the most affected over time, and symptoms usually spread to a neighbouring body region. For example, symptoms starting in one arm usually spread next to either the opposite arm or to the leg on the same side. Bulbar-onset patients most typically get their next symptoms in their arms rather than legs, arm-onset patients typically spreads to the legs before the bulbar region, and leg-onset patients typically spread to
5535-605: The Wall Street Journal , the Ice Bucket Challenge was begun by professional golfers as means to support various pet charities. One version of the challenge, which took place in Salem, Indiana , as early as May 15, 2014, involved dousing participants with cold water and then donating to a charity, for example a local child diagnosed with an inoperable brain tumor. In another version, the Auckland Division of
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5670-469: The ALS Association with the "ALS Heroes" award in 2015, for his "significant positive impact" on the fight against ALS. He was also nominated along with Frates for TIME Magazine's Person of the Year for his role in raising awareness for the disease and promoting research. In a statement, the ALS Association , acknowledging Quinn's efforts, went on to say, "The Ice Bucket challenge dramatically accelerated
5805-486: The ALS Functional Rating Scale - Revised (ALSFRS-R), a 12-item instrument survey administered as a clinical interview or self-reported questionnaire that produces a score between 48 (normal function) and 0 (severe disability). The ALSFRS-R is the most frequently used outcome measure in clinical trials and is used by doctors to track disease progression. Though the degree of variability is high and
5940-544: The BBC News drawing on the arguments made in the podcast. Retired professional wrestler Lance Storm declined the challenge despite being nominated twice, and posted a note on his official website stating that most of the money that is donated goes towards promotional and advertising of the ALS Association while the remaining amount (at most 25% of what is donated) "is going into the pockets of Big Pharma", which
6075-625: The Boston College baseball team , Peter Frates , Quinn helped draw attention to ALS by co-creating the Ice Bucket Challenge , a video enabled fundraiser, that went viral and helped generate more than $ 220m for medical research for the disease. The challenge went viral in 2014, when celebrities and common people all across the world filmed short-form videos of themselves dumping buckets of ice water on their heads, committing to donations for ALS research, and asking others to do
6210-537: The Spanish and German Wikipedias. Within weeks of the challenge going viral, The New York Times reported that the ALS Association had received $ 41.8 million in donations from more than 739,000 new donors from July 29 until August 21, more than double the $ 19.4 million the association received during the year that ended January 31, 2013. On August 29, the ALS Association announced that their total donations since July 29 had exceeded $ 100 million. The ALS Association
6345-580: The Stephen Heywood Patients Today Award in 2012 for his fundraising and advocacy work. Frates' Boston College and sporting connections became an initial focus of the challenge and strengthened its focus on ALS. Both Quinn and Frates did the challenge in support of the ALS Therapy Development Institute . After its initial start with Pete Frates, a minor league baseball player diagnosed with
6480-426: The intercostal muscles that support breathing are affected first. Over time, people experience increasing difficulty moving, swallowing ( dysphagia ), and speaking or forming words ( dysarthria ). Symptoms of upper motor neuron involvement include tight and stiff muscles ( spasticity ) and exaggerated reflexes ( hyperreflexia ), including an overactive gag reflex. While the disease does not cause pain directly, pain
6615-468: The lower motor neurons in the spinal cord. Primary lateral sclerosis (PLS) involves degeneration of only the upper motor neurons, and progressive muscular atrophy (PMA) involves only the lower motor neurons. There is debate over whether PLS and PMA are separate diseases or simply variants of ALS. Classical ALS accounts for about 70% of all cases of ALS and can be subdivided into where symptoms first appear as these are usually focussed to one region of
6750-432: The neuromuscular junction , such as myasthenia gravis (MG) and Lambert–Eaton myasthenic syndrome , may also mimic ALS, although this rarely presents diagnostic difficulty over time. Benign fasciculation syndrome and cramp fasciculation syndrome may also, occasionally, mimic some of the early symptoms of ALS. Nonetheless, the absence of other neurological features that develop inexorably with ALS means that, over time,
6885-545: The pathogenesis of ALS. It is still not fully understood why neurons die in ALS, but this neurodegeneration is thought to involve many different cellular and molecular processes. The genes known to be involved in ALS can be grouped into three general categories based on their normal function: protein degradation, the cytoskeleton , and RNA processing. Mutant SOD1 protein forms intracellular aggregations that inhibit protein degradation. Cytoplasmic aggregations of wild-type (normal) SOD1 protein are common in sporadic ALS. It
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#17327911724327020-438: The 1.2 million challenge videos which were posted during that time. Amyotrophic lateral sclerosis Amyotrophic lateral sclerosis ( ALS ), also known as motor neurone disease ( MND ) or Lou Gehrig's disease ( LGD ) in the United States, is a rare, terminal neurodegenerative disorder that results in the progressive loss of both upper and lower motor neurons that normally control voluntary muscle contraction. ALS
7155-480: The ALS Association announced that, thanks in part to donations from the Ice Bucket Challenge, the University of Massachusetts Medical School has identified a third gene that is a cause for the disease. Project MinE , a global gene sequencing effort to identify genetic drivers of ALS, received $ 1 million from the challenge, allowing them to broaden the scope of their research to include new sources in new parts of
7290-546: The ALS Association had filed an application to trademark the term "ice bucket challenge", but the application was retracted amid criticism a day later. William MacAskill , vice-president of Giving What We Can , an organization that advocates for people to engage in more effective altruism , was critical of the Ice Bucket Challenge, citing two chief objections. First, he claimed that the Ice Bucket Challenge resulted in "funding cannibalism": "for every $ 1 we raise, 50¢ would have been donated anyway". Relatedly, MacAskill claimed that
7425-469: The ALS Association in mid-October as being $ 1,000,000, with a survey by health analysts Treato showing that only 14% of donors from 2014 donated again in 2015. Australian Deputy Prime Minister Barnaby Joyce performed the challenge in 2016, nominating his colleague Michael McCormack , the Minister for Small Business . Fellow Australian MP Adam Marshall also performed the challenge. A new variant on
7560-467: The ALS Association's fundraiser for its support of animal testing. Anderson wrote on her Facebook page, "Trying to cure human diseases by relying on outdated and ineffective animal experiments isn't only cruel – it's a grave disservice to people who desperately need cures." American stunt performer and TV personality Steve-O questioned the campaign, suggesting that celebrities' videos generally did not share donation information for ALS charities, and that
7695-695: The ALS Association, because it uses embryonic stem cells in its ALS research. Related organisations such as the Family Research Council suggested that people participating in the Ice Bucket Challenge instead donate money to Midwest Stem Cell Therapy Center, Mayo Clinic , and the John Paul II Medical Research Institute , all three of which run clinical trials with adult stem cells , rather than embryonic ones. The Archdiocese of Cincinnati , with its 113 schools also recommended individuals participating in
7830-470: The Association and by Smith himself. Meteorologist Jason Samenow estimated that during the peak of the movement's popularity in 2014, the equivalent of 5,000,000 US gallons (19,000,000 L; 4,200,000 imp gal) of water would have been used for the challenge. This calculation assumes that the average of one 4-US-gallon (15 L; 3.3 imp gal) bucket of water was used per video for
7965-514: The Association's director of external affairs. Instead, the Association ran a "Last Summer" campaign commemorating the efforts of the public with the challenge, including the testimonies of those with ALS. Despite the reluctance of the MND Association, the cast of soap opera Hollyoaks nonetheless performed the challenge, nominating the cast of another soap, Casualty . Eddie Redmayne , having been nominated by Zellweger, also accepted
8100-574: The Cancer Society of New Zealand was the beneficiary. As with similar challenges, it was usually filmed so footage can be shared online. The National Fallen Firefighters Foundation popularized the "Cold Water Challenge" in early 2014 to raise funds as an unsanctioned spin-off of the polar plunge most widely used by Special Olympics as a fundraiser. On May 20, 2014, the Washington Township, New Jersey , fire department posted
8235-673: The Challenge. "We are so thrilled and grateful to have every Major League Baseball team supporting us this year," commented Frates. Celebrity participants in the 2015 challenge included Massachusetts governor Charlie Baker who took the challenge while wearing a "Free Brady" T-shirt (calling for the lifting of the suspension given to Tom Brady of the New England Patriots over Deflategate ), Bieber once again, actor Hugh Jackman (belatedly in early September 2015) and actress Renee Zellweger who, in response to criticisms of
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#17327911724328370-409: The Ice Bucket Challenge for 2015 to raise further funds with the intention of establishing it as an annual occurrence. It failed to raise the same viral attention as the 2014 event, which raised over $ 115M worldwide for the disease. However some people—including celebrities and various government officials around the world—have followed through with the intention of a yearly event by continuing to perform
8505-458: The Ice Bucket Challenge has sparked other social media challenges to be publicized, reaching a wide and diverse audience. The My Tree Challenge is an activity launched in Kerala which consists of planting a tree sapling and challenging others to do so. The My Tree Challenge was preceded by a Book List Challenge, started by Facebook users, where users post a list of books that they have read and liked
8640-458: The Ice Bucket Challenge to donate to such groups, but not to the ALS Association "saying the group's funding of embryonic stem cell research is 'in direct conflict with Catholic teaching'." PETA criticized the ALS Association's Ice Bucket Challenge, saying that money raised through the fundraiser would be used to fund "archaic and painful tests on animals." Russell Simmons , Pamela Anderson , and Grimes , among other celebrities, also criticized
8775-513: The Ice Bucket Challenge went viral on social media, particularly in the United States , with people, celebrities, politicians and athletes posting videos of themselves online and on TV participating in the event. According to The New York Times , people shared more than 1.2 million videos on Facebook between June 1 and August 13 and mentioned the phenomenon more than 2.2 million times on Twitter between July 29 and August 17. At its peak,
8910-549: The Ice Bucket Challenge. The 2021 and 2022 annual Yonkers Ice Bucket Challenge events were dedicated to the memory of Pat Quinn. with the latter held on July 31 (in spite of the "Every August ..." slogan). By this point the Empire City Casino had held an Ice Bucket Challenge event every year since 2015 except 2020 on account of the COVID-19 pandemic . Within 24 hours of being challenged, participants have to record
9045-672: The Motor Neurone Disease New Zealand Association Inc (later to become the Motor Neurone Disease New Zealand Charitable Trust ) promoted the ice-bucket challenge which raised NZ$ 35,000. In June 2018 in Seoul , South Korea the Challenge raised funds to build Korea's first dedicated hospital for ALS patients. The Empire City Casino in Yonkers announced it would hold a Challenge event for
9180-601: The Presidency Donald Trump but declined, opting to contribute to the campaign with a donation of $ 100. Justin Bieber LeBron James , and "Weird Al" Yankovic also challenged President Obama after completing the Ice Bucket Challenge. Hirohiko Araki , creator of the manga series JoJo's Bizarre Adventure , created a YouTube channel and uploaded only one video, which was an Ice Bucket Challenge video. Former President George W. Bush completed
9315-418: The ability to initiate and control all voluntary movement, known as locked-in syndrome . Bladder and bowel function are usually spared, meaning urinary and fecal incontinence are uncommon, although trouble getting to a toilet can lead to difficulties. The extraocular muscles responsible for eye movement are usually spared, meaning the use of eye tracking technology to support augmentative communication
9450-420: The above personality traits might underlie lifestyle choices which are in turn risk factors for ALS. Upon examination at autopsy, features of the disease that can be seen with the naked eye include skeletal muscle atrophy , motor cortex atrophy, sclerosis of the corticospinal and corticobulbar tracts , thinning of the hypoglossal nerves (which control the tongue), and thinning of the anterior roots of
9585-404: The aforementioned symptoms develops first, ALS is classified as limb-onset (begins with weakness in the arms or legs) or bulbar-onset (begins with difficulty in speaking or swallowing ). Most cases of ALS (about 90–95%) have no known cause , and are known as sporadic ALS . However, both genetic and environmental factors are believed to be involved. The remaining 5–10% of cases have
9720-471: The age of 60. The average survival from onset to death is two to four years, though this can vary, and about 10% of those affected survive longer than ten years. Descriptions of the disease date back to at least 1824 by Charles Bell . In 1869, the connection between the symptoms and the underlying neurological problems was first described by French neurologist Jean-Martin Charcot , who in 1874 began using
9855-425: The age of onset. While the peak age of onset is 58 to 63 for sporadic ALS and 47 to 52 for genetic ALS, about 10% of all cases of ALS begin before age 45 ("young-onset" ALS), and about 1% of all cases begin before age 25 ("juvenile" ALS). People who develop young-onset ALS are more likely to be male, less likely to have bulbar onset of symptoms, and more likely to have a slower progression of the disease. Juvenile ALS
9990-512: The ages of 40 and 70, with an average age of 55 at the time of diagnosis. ALS is 20% more common in men than women, but this difference in sex distribution is no longer present in patients with onset after age 70. While they appear identical clinically and pathologically, ALS can be classified as being either familial or sporadic, depending on whether there is a known family history of the disease and/or whether an ALS-associated genetic mutation has been identified via genetic testing. Familial ALS
10125-591: The annual challenge by signing a bill declaring the first week of August each year to be Ice Bucket Challenge Week. MND South Australia held an Ice Bucket Challenge campaign in February (during the Southern hemispheric summer) Pete Frates' family joined with the Beverly Police Department to hold an Ice Bucket Challenge event on August 27 in which family members and officers took part. In 2016,
10260-482: The arms rather than the bulbar region. Over time, regardless of where symptoms began, most people eventually lose the ability to walk or use their hands and arms independently. Less consistently, they may lose the ability to speak and to swallow food. It is the eventual development of weakness of the respiratory muscles, with the loss of ability to cough and to breathe without support, that is ultimately life-shortening in ALS. The rate of progression can be measured using
10395-497: The arms, legs, and bulbar region. While PMA is associated with longer survival on average than classical ALS, it is still progressive over time, eventually leading to respiratory failure and death. As with PLS developing into classical ALS, PMA can also develop into classical ALS over time if the lower motor neuron involvement progresses to include upper motor neurons, in which case the diagnosis might be changed to classic ALS. Isolated variants of ALS have symptoms that are limited to
10530-465: The body at initial presentation before later spread. Limb-onset ALS (also known as spinal-onset) and bulbar-onset ALS. Limb-onset ALS begins with weakness in the hands, arms, feet, and/or legs and accounts for about two-thirds of all classical ALS cases. Bulbar-onset ALS begins with weakness in the muscles of speech, chewing, and swallowing and accounts for about 25% of classical ALS cases. A rarer type of classical ALS affecting around 3% of patients
10665-419: The body due to the degeneration of the upper motor and lower motor neurons. Sensory nerves and the autonomic nervous system are generally unaffected, meaning the majority of people with ALS maintain hearing , sight , touch , smell , and taste . The start of ALS may be so subtle that the symptoms are overlooked. The earliest symptoms of ALS are muscle weakness or muscle atrophy, typically on one side of
10800-499: The body. Other presenting symptoms include trouble swallowing or breathing, cramping, or stiffness of affected muscles; muscle weakness affecting an arm or a leg; or slurred and nasal speech. The parts of the body affected by early symptoms of ALS depend on which motor neurons in the body are damaged first. In limb-onset ALS, the first symptoms are in the arms or the legs. If the legs are affected first, people may experience awkwardness, tripping, or stumbling when walking or running; this
10935-401: The brain to muscle, causes different types of symptoms. Damage to the upper motor neuron typically causes spasticity including stiffness and increased tendon reflexes , and/or clonus , while damage to the lower motor neuron typically causes weakness , muscle atrophy , and fasciculations . Classical, or classic ALS, involves degeneration to both the upper motor neurons in the brain and
11070-467: The campaign "this August, and every August, until there's a cure (for ALS)." "We have to finish what started last summer: every August until there's a cure," said Barb Newhouse, President and CEO of the ALS Association. The 2015 campaign received the support of Major League Baseball , with each club due to organise its own branch of the Challenge and then nominate another franchise, along with two other local organizations or personalities, to participate in
11205-534: The challenge again each subsequent summer. From 1991 to early 2014, a challenge of unknown origin often called the "Cold Water Challenge" became popular on social media in areas of the Northern United States and Northern Norway . The task usually involved the option of either donating money to cancer research or having to jump into cold water. In Norway the penalty for refusal could also be having to purchase alcoholic drinks for others. According to
11340-694: The challenge and nominated fellow former President Bill Clinton . The Prime Minister of the United Kingdom, David Cameron , was challenged by both Alex Salmond and Russell Brand , but also declined in favor of a donation. Peter Frates died on December 9, 2019, at his home in Beverly, Massachusetts , at the age of 34. The Ice Bucket Challenge raised over $ 220M worldwide. Its combination of competitiveness, social media pressure, online narcissism, and low barriers to entry led to more than 2.4 million tagged videos circulating Facebook . Even though 40–50% of
11475-413: The challenge encouraged moral licensing , whereby people who engage in one act they consider good may feel more licensed to engage in bad behavior. MacAskill's piece was met with considerable critical push-back, and he published a follow-up a few days later suggesting an Ice Bucket Challenge for causes he considered more important and cost-effective to support. Citing research from GiveWell , MacAskill gave
11610-577: The challenge for a second year, filming his video in London and nominating Charlie Cox , who did his 2015 challenge in New York. An attempt at the world record for the largest number of people simultaneously performing the challenge took place September 6, 2015, in Tewkesbury as part of a fundraiser for child bereavement charity Winton's Wish. In the event, the world record of 428 remained untouched but
11745-430: The challenge for wasting water in drought conditions, used water from a drinking trough in a horse stables while standing in the trough to ensure every last drop was recycled back into its original source. President Barack Obama also received another nomination, this time by former New Orleans Saints player Steve Gleason (himself diagnosed with ALS). Republican presidential candidate Donald Trump , despite having done
11880-501: The challenge generated more than 70,000 tweets per day with hashtags such as #IceBucketChallenge , #ALSIceBucketChallenge , and #StrikeOutALS . Mashable called the phenomenon "the Harlem Shake of the summer". Prior to the challenge, public awareness of the disease amyotrophic lateral sclerosis (ALS) was relatively limited; the ALS Association stated that prior to the challenge going viral only half of Americans had heard of
12015-516: The challenge in 2014, turned down his 2015 nomination from Boston mayor Marty Walsh , labelling Walsh "a clown" and suggesting that Boston "get a new mayor." In the UK, the MND Association declined to revive the challenge. "We felt we raised a significant amount of money and awareness last summer. While people might be keen to do it again, we wouldn't say please do it again," said Chris James,
12150-441: The challenge may have adverse health effects on participants, including potentially inducing a vagal response which might, for example, lead to unconsciousness in people taking blood pressure medications. A number of participants have sustained injuries, and at least one death has been indirectly linked to the challenge, as a result of injuries sustained unrelated to the dumping of ice water, with another death thought to be caused by
12285-538: The challenge on social media. Both Quinn and Frates undertook the challenge in support of the Cambridge, MA, based ALS Therapy Development Institute . Writing in their book, Ice Bucket Challenge: Pete Frates and the Fight Against ALS , authors Casey Sherman and Dave Wedge note that Frates went on to become Quinn's mentor, drawn by his "determination, grit, drive, and passion" and also the kinship from
12420-489: The challenge this year, the "What's In Your Bucket?" challenge, featured the replacement of the ice cubes with other substances, including tomato ketchup, spaghetti, pickles, beer, baby powder, coffee, and sand. A further attempt on the world record for the largest mass Ice Bucket Challenge in Buffalo, New York drew 650 participants, 71 short of the existing record of 721. Charlie Baker , governor of Massachusetts, formalized
12555-610: The challenge's spiel do not increase awareness of what the disease actually does and who it is so harmful to. The success of the challenge prompted the Muscular Dystrophy Association , which also raises funds to combat ALS, to discontinue its long-running annual telethon, the MDA Show of Strength , after the 2014 edition, stating that the Ice Bucket Challenge prompted the MDA to reevaluate how it can connect with
12690-400: The challenge, the participant was expected to donate $ 10 if they poured the ice water over their head or donate $ 100 if they did not. In another version, dumping the ice water over the participant's head was done in lieu of any donation, which led to some criticisms of the challenge being a form of " slacktivism ". Many participants donated $ 100 in addition to doing the challenge. In mid-2014,
12825-466: The condition, but as of 2023 are not in general medical use. Because symptoms of ALS can be similar to those of a wide variety of other, more treatable diseases or disorders, appropriate tests must be conducted to exclude the possibility of other conditions. One of these tests is electromyography (EMG), a special recording technique that detects electrical activity in muscles. Certain EMG findings can support
12960-447: The cytoplasm of motor neurons. In about 97% of people with ALS, the main component of the inclusion bodies is TDP-43 protein; however, in those with SOD1 or FUS mutations, the main component of the inclusion bodies is SOD1 protein or FUS protein, respectively. Prion -like propagation of misfolded proteins from cell to cell may explain why ALS starts in one area and spreads to others. The glymphatic system may also be involved in
13095-424: The diagnosis of ALS is primarily made based on a physician's clinical assessment after ruling out other diseases. Physicians often obtain the person's full medical history and conduct neurologic examinations at regular intervals to assess whether signs and symptoms such as muscle weakness, muscle atrophy , hyperreflexia , Babinski's sign , and spasticity are worsening. A number of biomarkers are being studied for
13230-487: The diagnosis of ALS. Another common test measures nerve conduction velocity (NCV). Specific abnormalities in the NCV results may suggest, for example, that the person has a form of peripheral neuropathy (damage to peripheral nerves) or myopathy (muscle disease) rather than ALS. While a magnetic resonance imaging (MRI) is often normal in people with early-stage ALS, it can reveal evidence of other problems that may be causing
13365-424: The diagnosis. Around 50% of people with ALS die within 30 months of their symptoms beginning, about 20% live between five and ten years, and about 10% survive for 10 years or longer. The most common cause of death among people with ALS is respiratory failure , often accelerated by pneumonia . Most ALS patients die at home after a period of worsening difficulty breathing, a decline in their nutritional status, or
13500-426: The disease and should be considered. ALS must be differentiated from the "ALS mimic syndromes", which are unrelated disorders that may have a similar presentation and clinical features to ALS or its variants. Because the prognosis of ALS and closely related subtypes of motor neuron disease are generally poor, neurologists may carry out investigations to evaluate and exclude other diagnostic possibilities. Disorders of
13635-499: The disease in 2012, the movement went viral in the Boston area which showed a much higher number of posts than any other area of the United States. In his video, Stephen Hawking declined to perform the challenge due to pneumonia the year before; however, his three children took the challenge for him. The President of the United States, Barack Obama , was challenged by Ethel Kennedy as well as by businessman and future successor to
13770-581: The disease, often referred to as "Lou Gehrig's disease", after baseball player Lou Gehrig , who publicly revealed his diagnosis in 1939. After the Ice Bucket Challenge went viral on social media, public awareness and charitable donations to ALS charities soared. Hits to the English Misplaced Pages 's article on amyotrophic lateral sclerosis grew from an average of 163,300 views per month to 2.89 million views in August 2014, and similar increases occurred in
13905-697: The disease, that "he felt like he was the Nostradamus of ALS". The challenge first received increased media attention in the United States on June 30, 2014, when personalities of the Golf Channel program Morning Drive televised the social-media phenomenon, and performed a live, on-air Ice Bucket Challenge. On the same day, golfer Chris Kennedy did the challenge, then challenged his cousin Jeanette Senerchia of Pelham, New York , whose husband, Anthony, had ALS for 11 years. Kennedy's challenge
14040-422: The distinction will not present any difficulty to the experienced neurologist; where doubt remains, EMG may be helpful. Patrick Quinn (ALS activist) Patrick Quinn (February 10, 1983 – November 22, 2020) was an American amyotrophic lateral sclerosis (ALS) activist who helped generate awareness and raise more than US$ 220 million for medical research through the Ice Bucket Challenge ,
14175-645: The example of donating to the Against Malaria Foundation to end malaria . MacAskill's pieces were cited in Nonprofit Quarterly , and Boston Review . Julia Belluz at Vox.com wrote a piece with similar criticisms, linking to MacAskill's piece. Belluz noted that funding for diseases was often not proportional to the number of deaths caused by the diseases. She also noted that donating to developing world health causes could provide much greater healthcare value than donating for
14310-466: The excitatory neurotransmitter glutamate , is a mechanism thought to be common to all forms of ALS. Motor neurons are more sensitive to excitotoxicity than other types of neurons because they have a lower calcium-buffering capacity and a type of glutamate receptor (the AMPA receptor ) that is more permeable to calcium. In ALS, there are decreased levels of excitatory amino acid transporter 2 ( EAAT2 ), which
14445-559: The fact that both were much younger than the average ALS patient. Quinn continued his advocacy after the challenge through his foundation "Quinn for the Win," to generate awareness of the disease and raise funds for research. He continued to speak in forums raising awareness and conducted the challenge annually every August, in Yonkers, NY, called "Every August Until the Cure". He was honored by
14580-404: The fifth year running. Political participants this year included Massachusetts State Senator Joan Lovely . A fifth anniversary commemorative mass Ice Bucket Challenge was held at Copley Square in Boston, Massachusetts, with Frates and state governor Charlie Baker in attendance. ALS Canada's staff's annual commemorative performance of the Ice Bucket Challenge also reached its fifth year to end
14715-412: The fight against ALS, leading to new research discoveries, expansion of care for people with ALS, and greater investment by the government in ALS research.” Speaking of his specific role, the ALS Association said, "Pat changed the trajectory of the fight against ALS forever. He inspired millions to get involved and care about people who are living with ALS." Frates had died of the disease a year earlier at
14850-614: The initial $ 15 million in funds was insignificant, given the star power of the celebrities participating. He noted that, of the videos he viewed, only Charlie Sheen and Bill Gates mentioned that the point is to donate money. A similar criticism was made by Jacob Davidson in Time Magazine and by Arielle Pardes in Vice . On August 22, 2014, Dr. Brian O'Neill, a physician at the Detroit Medical Center , warned that
14985-878: The likelihood of a very rare condition by a small amount. For instance an individual's lifetime risk of developing ALS might go from "1 in 400" without an exposure to between "1 in 300" and "1 in 200" if they were exposed to heavy metals. A range of other exposures have weaker evidence supporting them and include participation in professional sports , having a lower body mass index , lower educational attainment , manual occupations, military service, exposure to Beta-N-methylamino-L-alanin (BMAA), and viral infections. Although some personality traits, such as openness , agreeableness and conscientiousness appear remarkably common among patients with ALS, it remains open whether personality can increase susceptibility to ALS directly. Instead, genetic factors giving rise to personality might simultaneously predispose people to developing ALS, or
15120-493: The majority still did not donate. In July 2015, the Huffington Post reported on the ALS Association 's summary of how the funds raised through the Ice Bucket Challenge were distributed. By percentage, 67% of all funds (about $ 77 million) went to research, 20% to patient and community services, 9% to public and professional education, 2% to additional fundraising, and 2% to external processing fees. On July 25, 2016,
15255-457: The most. The Rice Bucket Challenge , that started in India in late August 2014 and later spread to other South Asian nations, was also partly a response to the Ice Bucket Challenge's wastefulness of water. The "Pie In The Eye Challenge" challenges the nominated person to receive a pie in the face . One particular occurrence of this, the late 2016 Waitress Pie Challenge, was initiated by the cast of
15390-525: The musical Waitress to raise awareness of breast cancer. The Milk Bucket Challenge in which milk is poured over the nominated person, was organised in August 2015 by English dairy farmers to raise awareness of their financial plight. The Rubble Bucket Challenge, started by Jordanian comedian Mohammed Darwaza, involves dumping a bucket of sand and rocks over one's head. This challenge was further popularized by Palestinian journalist Aymal al Aloul, and aims to increase awareness of Gazans who have lost their homes in
15525-441: The new donors were likely to make one-time gifts only, the Challenge instigated large numbers of people, videos, and donations. The challenge also benefited from a unique balance of mass interest and individual identification. In using social media as its platform, it accessed many people worldwide; in having its participants individually identify potential candidates – calling them out by "tagging" them – it felt personal. Furthermore,
15660-735: The nucleus, translation of the RNA into toxic dipeptide repeat proteins in the cytoplasm, and decreased levels of the normal C9orf72 protein. Mitochondrial bioenergetic dysfunction leading to dysfunctional motor neuron axonal homeostasis (reduced axonal length and fast axonal transport of mitochondrial cargo) has been shown to occur in C9orf72 -ALS using human induced pluripotent stem cell (iPSC) technologies coupled with CRISPR/Cas9 gene-editing, and human post-mortem spinal cord tissue examination. Excitotoxicity , or nerve cell death caused by high levels of intracellular calcium due to excessive stimulation by
15795-705: The nucleus, which may mean that their target RNA transcripts do not undergo normal processing. Other RNA metabolism genes associated with ALS include ANG , SETX , and MATR3 . C9orf72 is the most commonly mutated gene in ALS and causes motor neuron death through a number of mechanisms. The pathogenic mutation is a hexanucleotide repeat expansion (a series of six nucleotides repeated over and over); people with up to 30 repeats are considered normal, while people with hundreds or thousands of repeats can have familial ALS, frontotemporal dementia, or sometimes sporadic ALS. The three mechanisms of disease associated with these C9orf72 repeats are deposition of RNA transcripts in
15930-591: The ongoing conflict with Israel. The Love Bucket Challenge, started by Kerala newspaper Malayala Manorama encourages people to fill a bucket with items to donate to orphanages. The Kaapi Challenge uses coffee , and is a challenge done primarily by the Chennai Super Kings to commemorate the 375th anniversary of the city of Chennai . A number of criticisms arose relating to the campaign, accusing it of being self-congratulatory, focusing primarily on fun rather than donating money to charity, and substituting
16065-456: The patient struggle to react appropriately to what can be frequent and inappropriate outbursts in public. In addition to mild changes in cognition that may only emerge during neuropsychological testing, around 10–15% of individuals have signs of frontotemporal dementia (FTD). Repeating phrases or gestures , apathy, and loss of inhibition are the most frequently reported behavioral features of ALS. ALS and FTD are now considered to be part of
16200-457: The public. In 2017, Frates published a book about the Ice Bucket Challenge detailing his own experience with ALS as well as his involvement in the social movement. Half of the proceeds will go to the Frates family. On August 1, 2015, a group of ALS organizations in the United States, including the ALS Association, relaunched the Ice Bucket Challenge for 2015. The group said they intended to rerun
16335-908: The remaining genes mostly accounting for fewer than 1% of either familial or sporadic cases. ALS genes identified to date explain the cause of about 70% of familial ALS and about 15% of sporadic ALS. Overall, first-degree relatives of an individual with ALS have a ~1% risk of developing ALS themselves. The multi-step hypothesis suggests the disease is caused by some interaction between an individual's genetic risk factors and their cumulative lifetime of exposures to environmental factors, termed their exposome . The most consistent lifetime exposures associated with developing ALS (other than genetic mutations) include heavy metals (e.g. lead and mercury ), chemicals (e.g. pesticides and solvents ), electric shock , physical injury (including head injury ), and smoking (in men more than women). Overall these effects are small, with each exposure in isolation only increasing
16470-537: The same. The campaign had over 20 million videos being created and shared with celebrities including former President George W. Bush , Bill Gates , Justin Bieber , LeBron James , Leonardo DiCaprio , Lady Gaga , and Oprah Winfrey . The campaign started in Florida with golfer Chris Kennedy, who took the challenge to cheer a family member with ALS; the news soon reached Quinn and Frates, who took up promoting
16605-448: The spinal cord. The defining feature of ALS is the death of both upper motor neurons (located in the motor cortex of the brain) and lower motor neurons (located in the brainstem and spinal cord). In ALS with frontotemporal dementia, neurons throughout the frontal and temporal lobes of the brain die as well. The pathological hallmark of ALS is the presence of inclusion bodies (abnormal aggregations of protein) known as Bunina bodies in
16740-405: The symptoms, such as a spinal cord tumor, multiple sclerosis , a herniated disc in the neck, syringomyelia , or cervical spondylosis . Based on the person's symptoms and findings from the examination and from these tests, the physician may order tests on blood and urine samples to eliminate the possibility of other diseases, as well as routine laboratory tests. In some cases, for example, if
16875-419: The term amyotrophic lateral sclerosis . ALS is a motor neuron disease , which is a group of neurological disorders that selectively affect motor neurons , the cells that control voluntary muscles of the body. Other motor neuron diseases include primary lateral sclerosis (PLS), progressive muscular atrophy (PMA), progressive bulbar palsy , pseudobulbar palsy , and monomelic amyotrophy (MMA). As
17010-562: The treatment of rare diseases, an observation that is common in the effective altruism movement. In the BBC 's More or Less podcast, economist Tim Harford discussed the Ice Bucket Challenge and how to select the best charities, referencing work by GiveWell . He himself participated in the Ice Bucket Challenge, donating to the Schistosomiasis Control Initiative . Ben Carter and Keith Moore wrote an article for
17145-404: The types of motor neurons that are affected. To successfully control any voluntary muscle in the body, a signal must be sent from the motor cortex in the brain down the upper motor neuron as it travels down the spinal cord. There, it connects via a synapse to the lower motor neuron which connects to the muscle itself. Damage to either the upper or lower motor neuron, as it makes its way from
17280-509: The upper arms symmetrically and progressing downwards to the hands. Flail leg syndrome is characterized by lower motor neuron damage leading to asymmetrical weakness and wasting in the legs starting around the feet. Isolated bulbar palsy is characterized by upper or lower motor neuron damage in the bulbar region (in the absence of limb symptoms for at least 20 months), leading to gradual onset of difficulty with speech ( dysarthria ) and swallowing ( dysphagia ). ALS can also be classified based on
17415-490: The videos were often entertaining. The average participants kept their videos under a minute, requiring limited commitment from any viewers. Another concept the Challenge benefited from was its ripple effect, inspiring features for articles, such as The Guardian ' s "10 More of the Best Celebrity Takes on the Ice Bucket Challenge." Despite its marketing success, critics suggested that the ease of repeating
17550-467: The world. Having identified the link between the gene, NEK1 , and ALS will allow for a new targeted gene for therapy development, as well as focused drug development. The Ice Bucket Challenge serves as a strong example of the effectiveness of digital media, showcasing its ability to spread information and awareness about various topics. The digital sphere allows for similar challenges to go viral through hashtags, infographics, and fundraisers. The success of
17685-506: Was an unusual case. Cognitive impairment or behavioral dysfunction is present in 30–50% of individuals with ALS, and can appear more frequently in later stages of the disease. Language dysfunction , executive dysfunction , and troubles with social cognition and verbal memory are the most commonly reported cognitive symptoms in ALS. Cognitive impairment is found more frequently in patients with C9orf72 gene repeat expansions, bulbar onset, bulbar symptoms, family history of ALS, and/or
17820-544: Was co-founded by Pat Quinn and Pete Frates ; it went viral on social media during July–August 2014. In the United States, many people participated for the ALS Association , and in the United Kingdom, many people participated for the Motor Neurone Disease Association , although some individuals opted to donate their money from the Ice Bucket Challenge to other organizations. The challenge encourages nominated participants to be filmed having
17955-501: Was only offered to those with obviously familial ALS. But it is increasingly recognized that cases of sporadic ALS may also be due to disease-causing de novo mutations in SOD1 , or C9orf72 , an incomplete family history, or incomplete penetrance , meaning that a patient's ancestors carried the gene but did not express the disease in their lifetimes. The lack of positive family history may be caused by lack of historical records, having
18090-508: Was raising money for the Hospice of Palm Beach County. In the Summer 2015 edition of the ALS Association's internet magazine "Visions" (page 5) says that "It all started in Florida with a golfer named Chris Kennedy. When Kennedy took the challenge in mid-July last year, the then little-known stunt was not tied to a specific charity. Kennedy thought taking the challenge might bring some cheer to
18225-459: Was the first documented instance of the challenge being connected with ALS. At this time, the challenge was not connected directly with ALS. Participants would donate to a charity of their choice. Pat Quinn, who was friends on Facebook with the Senerchias, encouraged his friends to take the challenge, and soon after, Pete Frates began posting about the challenge on Twitter . Frates was awarded
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