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August Is Spinal Muscular Atrophy Awareness Month

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Last Updated: 02 July 2021

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Each August, organization Families OF Spinal Muscular Atrophy observes Spinal Muscular Atrophy AWARENESS Month in order TO help promote AWARENESS OF this disease that will hopefully one day lead TO cure. Sma IS Motor Neuron disease, which affects voluntary muscles that ARE used for activities such as crawling, walking, head and neck control, and swallowing. It IS a relatively common RARE disorder affecting approximately one in 6 000 babies, and about one in 40 people ARE genetic carriers OF disease. Sma affects muscles throughout the body, although proximal muscles ARE often the most severely affected. Proximal muscles ARE those closest TO trunk OF body - shoulders, hips and back. Weakness in legs IS generally greater than in arms and sometimes feeding and swallowing CAN BE affect. Involvement of respiratory muscles - those involved in breathing and coughing - CAN lead to increased tendency toward pneumonia and other lung problems. There ARE four types OF SMA - Type I, II, III, and IV. Determination OF Type OF SMA IS based on physical milestones achieve. The first two types ARE diagnosed when a child is very young - AS early as three months FOR Type I and 15 months FOR Type II. Type III IS MUCH more variable in age of onset, WITH diagnosis not occurring until adolescence in some cases. Type IV IS also KNOW AS Adult Onset SMA because symptoms ARE not present until after age 35. It IS RARE FOR SMA TO begin between the ages of 18 and 30, WITH Adult Onset SMA being MUCH less common than the other three types. Each Type OF SMA has variability among individual patients, which IS important TO remember when considering individual care. Raising a child WITH SMA should BE no different than raising a child WHO IS not affected, BUT instead adapting age - appropriate activities to their level OF ability. It IS RARE that SMA also affects patients ' intellectual ability and it IS often observed that patients WITH SMA ARE unusually bright and sociable.

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions.

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions

Advocacy and fundraising

Every August is Spinal Muscular Atrophy Awareness Month, and this year we have a lot to celebrate. At the beginning of August, Biogen and IONIS Pharmaceuticals announced encouraging results from a late - stage clinical trial testing an experimental drug for infants with SMA type 1. The drug is called nusinersen and is designed to increase production of needed SMN protein. Positive interim results from this study led researchers to halt the trial and invite all participants to receive drug, instead of having some patients continue to receive placebo. Biogen plans to file for regulatory approval for nusinersen by the end of 2016. Biogen's application will mark the first ever disease - modifying drug submitted for approval in the US for SMA. Together with NIH and CureSMA, MDA funds critical early - stage research that gives way to development of nusinersen. This progress is made possible by long - term investments in research that are now giving way to promising therapies reaching clinic.S For SMA specifically, pace of therapy development is unprecedented, given that it has only been decade since the causative gene was originally discover. In the past ten years, we have already witnessed first human trials testing therapies targeting altered SMN gene, underlying cause of disease. In total, there are seven therapies currently in clinical trials for SMA with over a dozen other approaches nearing clinic. Mdas investment in biomedical research has helped bring the US to where we find ourselves today. Mdas mission is to save and improve the lives of those living with neuromuscular diseases including SMA, Muscular dystrophy and other disorders. Mda fulfils our mission by funding biomedical research, providing expert clinical care and support through a network of more than 150 specialty care centers nationwide, and championing public policies and programs that benefit those living with neuromuscular disorders and people who love them. For more than 65 years, MDA has been on the frontlines of research for SMA and other neuromuscular diseases, taking a unique, big picture perspective to find breakthroughs across disorders. Since its inception, MDA has invested more than $1 billion in research grants to accelerate treatments and cures for neuromuscular disorders, making MDA one of the largest sources of neuromuscular disease funding. Over the past five years alone, MDA has supported more than 30 projects focussing on SMA with investments totaling over $9 million in support. Mda is also dedicated to ensuring increased federal funding for research, which is why sustained robust funding for National Institutes of Health is one of MDA policy priorities. The federal government is the largest funder of medical research in the US, and recent SMA therapy developments are examples of progress that is possible when different funding sources come together around research. Funding for biomedical research is key to finding treatments and cures for SMA and all neuromuscular disorders.

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions.

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions

Other events

Spinal Muscular atrophy is a disease that robs people of physical strength by affecting motor nerve cells in the spinal cord, taking away ability to walk, eat, or breathe. The most severe form of diseaseSMA, type Iis also the most common, making SMA the leading genetic cause of death for infants. Sma is caused by a mutation in survival motor neuron gene 1. In a healthy person, this gene produces protein that is critical to the function of nerves that control our muscles. Because individuals with SMA dont produce this protein at high enough levels, those nerve cells cannot properly function and eventually die. Sma can affect any race or gender. Though about 1 in 50 Americans is genetic carrier for mutation that causes SMA, many have never heard of SMA until it affects their family. While the dedicated SMA community works year round to raise funds for and awareness of SMA, those efforts take on special meaning during August, which is SMA Awareness Month. Families host special events, partner up with local baseball teams for Awareness events, and take part in Annual SMA Candlelighting. August is also a time to raise awareness of many reasons for hope. In the last 15 years, SMA drug pipeline has gone from two potential drugs in the beginning stages of preclinical discovery, to 18 ongoing drug programs today. Seven of those drugs are now being tested in clinical trials. While growing, aggressive investment is needed to continue moving these drugs forward, progress thus far has invigorated efforts throughout the community. Progress has also animated efforts within the medical community. Recent research, through partnership between Cure SMA and Parent Project Muscular Dystrophy, shows that, of SMA families who have not participated in clinical trials, overwhelming majority do not participate because they do not know about available opportunities. As more and more drugs move through the clinical trials process, it is crucial that healthcare providers keep abreast of these clinical trials, and guide families through complex decisions of whether or not to participate. Our voice helps us reach other families who are struggling with the same disease, reach supporters who can help us raise money to help support research, say Camp family of their efforts to raise awareness of SMA, which affects their youngest child, Asher. Thanks to families like Camps, vibrant, hopeful, compassionate SMA community is at the center of all of these efforts. Jill Jarecki, PhD, is research director of Cure SMA, and coordinator of Cure SMA Scientific Advisory Board. Under Jill's leadership, Cure SMA has invested over $59 million in SMA research, and the Cure SMA community has grown to include over 110 000 supporters and families. Learn more at www.

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions.

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions

SPINAL MUSCULAR ATROPHY AWARENESS MONTH

Spinal Muscular Atrophy Awareness Month takes steps to find cure genetic disease affecting 1 in 11 000 births. Sma damages motor nerve cells in the spinal cord. Those who suffer from SMA lose the ability to walk, eat and breathe without medical intervention. Spinal Muscular Atrophy Awareness Month strives to raise awareness of conditions caused by deficiency of motor neuron protein called SMN and other rare forms of Spinal Muscular Atrophy that stem from chromosome mutations. Spinal Muscular Atrophy Awareness Month seeks to educate the public and generate support for those with SMA. Through research, cure can be find. Spinal Muscular Atrophy is a motor neuron disease characterized by wasting away of nerve cells, called motor neurons, in the spinal cord. Spinal Muscular Atrophy is the leading genetic cause of death in babies under the age of two. It affects families of all ethnic backgrounds, often with no prior history of disease. In the US, one person in every six - to ten - thousand develops disease, and one in fifty is carrier. All levels of SMA require varying degrees of treatment, involving some combination of medication, technology, and therapy. The good news is that many children and adults with SMA lead full, productive lives, with proper treatment and physical therapy. The goal of SMA Awareness is to show our support through local and national events, raise awareness, educate the general population, create funding for more research and help find cure. Through this Month - long Awareness campaign and more like it annually, it is hop to honor all those whose lives have been affected by SMA and bring about future change. Visit www. Curesma. Org to learn more about Spinal Muscular Atrophy. Get involved by volunteering or making a donation.S Light candle for those who have passed away from SMA and honor those who are fighting disease. Use CureSMA to share on social media. Spinal Muscular Atrophy Awareness Month was found to create support and advocacy for those who battle disease and to seek cure. There are over 1 500 National Days. Dont miss single one. Celebrate Every Day with the National Day Calendar!

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions.

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions

About Author

Sma IS a genetic disease that affects the nervous system, specifically parts of the body that control voluntary movement. It causes motor neurons within the spinal cord TO deteriorate over time, which classifies it AS motor neuron disease. While severity varies from case TO case, majority OF those affected by SMA require significant changes TO their lifestyle due TO disease. The main cause of Spinal Muscular Atrophy IS a genetic mutation. This mutation affects production of SMN proteins, which ARE what help neurons communicate WITH muscles within the body. Without these SMN proteins, body slowly loses the ability to move these muscles, resulting in loss of motor function.

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions.

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions

Diagnosis Of SMA

Spinal muscular atrophy is a rare disease and often some medical professionals are not familiar with the condition. If your seniors are at risk of this disease, it is vital you seek out assistance from the right professionals. First steps in diagnosis of neuromuscular disease are usually in - office physical examination and family history, with some simple tests to distinguish spinal muscular atrophy from similar conditions. Diagnosis can then also be determined through blood testing to detect specific gene,s muscle biopsy, or electromyography - electrical testing of muscles. In some cases, doctors may order muscle biopsy, which involves taking a small sample of muscle tissue and looking at it under a microscope. Other tests sometimes used to diagnose SMA include one that measures nerve conduction velocity and one that measures electrical activity in muscle, called electromyogram, or EMG. Nerve conduction velocity tests involve sensations that feel like mild electric shocks, and EMGs require that short needles be inserted into muscles.


What Is Spinal Muscular Atrophy?

Spinal Muscular Atrophy refers to a group of genetic conditions that cause muscle weakness and atrophy in children and adults. Sma is a disease that affects the body's ability to control muscle movements by attacking and destroying lower motor neurons. Atrophy means that the mass and size of muscles is reduce, also be described as muscle wasting. Motor nerves in spinal cord control muscles that are used for breathing, crawling, walking, head and neck control, and swallowing. Sma is characterized by muscles that are shrinking due to extended inactivity, However, this condition does not occur in all people who are inactive. Instead, it is a genetic, progressive disease that directly impacts motor neurons of the brain stem and spinal cord.

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions.

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions

Treatment of Spinal Muscular Atrophy

If your loved one is diagnosed with SMA, their treatment team may include a variety of professionals such as: occupational therapists, Neurologists, exercise therapists, Physiotherapists Dietitians. These professionals can work with your loved one to create an approach that involves exercises, pain relief, muscle stimulation, and activities that encourage ongoing muscular health. The most important thing to keep in mind when it comes to caring for seniors coping with SMA is preventing further muscle loss and maintaining the health of muscles that are still leave. While there is no cure for this disease, using these approaches can help to slow the progression of disease and keep the body healthier and stronger for longer.

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions.

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions

Sources

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions.

* Please keep in mind that all text is machine-generated, we do not bear any responsibility, and you should always get advice from professionals before taking any actions

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