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SMA and the new miracle drug Spinraza

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Spinal muscular atrophy, or SMA, is a genetic disease that attacks nerve cells in the spinal cord. These nerve cells, known as motor neurons, communicate with the voluntary muscles in the body, such as those in the arms and legs. As more neurons are lost, muscles start to weaken and breathing, crawling, swallowing, and walking can become more difficult. It also can be difficult for those with SMA to control movements in their heads and necks. Though SMA runs in families, parents can exhibit no symptoms but still carry the gene. There are many types of SMA, and, according to the National Institute of Neurological Disorders and Stroke, the type of SMA is determined by the age of onset and the severity of symptoms. SMA Type I is evident at birth or within the first few months of a child being born. Symptoms may include difficulty swallowing, feeble movements of the arms and legs, loose limbs and trunk, impaired breathing, and a weak sucking reflex. SMA Type II is evident between the ages of six and 18 months, and the legs are typically more impaired than the arms. An early indicator may be a baby who is not crawling or walking. SMA Type III may be evident when a child reaches his or her toddler years, but sometimes does not appear until adolescence. When a child has SMA Type III, he or she may have trembling fingers and may experience difficulty getting up from a sitting position. Children with SMA Type II or Type III are at an increased risk of respiratory infections.

What causes SMA?

According to the Muscular Dystrophy Association, chromosome 5 SMA, the most common form of SMA, is caused by a deficiency of SMN, a motor neuron protein. This protein is necessary for normal motor neuron function, and a deficiency of SMN is caused by mutations on chromosome 5 in the SMN1 gene. Mutations in other genes may also cause SMA, and such cases are referred to as non-chromosome 5 SMA.

What are the symptoms of SMA?

There are various types of SMA, and the symptoms can vary depending on the type of SMA a person has. The following are some of the symptoms associated with the various types of SMA.

  • Type 1: Type 1 is the most severe type of SMA. When a child is type 1, he or she may have difficulty supporting his or her head and sitting without help. Difficulty swallowing and weakness in the arms and legs may also occur. The muscles that control breathing also can be compromised when a child has type 1 SMA, and breathing problems can affect a child’s life expectancy.
  • Type 2: Type 2 SMA typically affects the legs more than the arms. Type 2 SMA affects children between six and 18 months of age, and such kids may be able to sit, stand or walk with help.
  • Type 3: The mildest form of SMA, type 3 may be referred to as juvenile SMA. Children with type 3 can often stand or walk without help, but they may have difficulty climbing stairs, getting up from a chair or running.
  • Type 4: Type 4 SMA begins in adulthood, and men and women may experience muscle weakness, twitching or breathing problems. Physical therapy can help men and women better manage their symptoms, which typically only affect the upper arms and legs.

Recently the FDA approved an amazing new drug Spinraza to treat symptoms of SMA and prolong these life of individuals taking Spinraza. With a few injections, patients with SMA may be able to gain muscle strength and live longer by a year or more. It cost $125,000 an injection, and in the first two months one takes 4 injections in the spine. That’s half a million dollars for the first four shots. Subsequent costs for this possibly lifelong therapy are expected to be about $375,000 annually, with about three injections required each year. While this may seem extremely expensive the drug was developed to save lives, along with some resources available to help individuals requiring the drug. With coverage being more readily available to those effected the most, starting with SMA type I. Remember if you are trying to obtain Spinraza use every resource available at your disposal and educate yourself on the drug, available resources, and your healthcare. Don’t be afraid to ask questions and challenge your neurologist who would prescribe Spinraza along with your insurance representative, and if you have to, seek out a social worker for assistance. Be your own advocate. Take into account this drug has been developed and approved in a significantly short amount of time. Spinraza is for a relatively low percentage of the population, lots of money and resources were put into the development of this drug. For more information and resources go to SMAnewstoday.com. Remember to connect yourself with other individuals with SMA to share resources and connect with others who are going through the same thing you may be experiencing with SMA.

Parents can also learn more about SMA by visiting the Muscular Dystrophy Association online at www.mda.org  & www.curesma.org

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Move all summer long; 5 activities to keep children active

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(Family Features) Everybody, no matter their age, can benefit from daily physical activity. According to the Centers for Disease Control and Prevention (CDC), young children should be physically active throughout the day for growth and development. Despite the common misconception that children are in perpetual motion, the CDC reminds caregivers to encourage children to be active when they play.

“Physical activity is important because it is critical in assisting with gross motor development and helps support development in other areas,” said Khy Sline from KinderCare Learning Center’s education team. “Children thrive when we give them the tools to use their bodies and muscles in new ways and make mind-body connections.”

Consider these five activities to encourage children to get moving.

Blow bubbles. Appealing to children from infancy on up, seeing bubbles floating around can encourage babies to reach out and try to grab them, building arm strength and coordination. Toddlers and older children can run around the patio or lawn chasing bubbles and watching them pop.

Build a tunnel. Whether indoors or out, made from furniture covered with sheets or cardboard boxes, tunnels encourage children to move over, under, around and through, which helps them explore new ways of moving while also building coordination and balance.

Play hide and seek. As they dash around trying to find the perfect hiding spot, children build spatial awareness, their understanding of where their bodies are in relation to other people and objects.

Play red light, green light. This classic game helps children build coordination – connecting the verbal instruction with the physical movement – while also teaching them impulse control, an essential executive function skill. Be sure to get creative with instructions and add variations like tip-toeing, crawling, hopping and more.

Walk the line. Draw a line on the ground using chalk outdoors or painter’s tape indoors and encourage your children to walk along the line. This activity helps children improve balance and coordination. Get creative and add in a challenge by drawing a wavy or zig-zag line. Once your children get the hang of following the line, ask them to think of other ways to travel along that space, such as hopping on one foot or skipping.

For more ideas to encourage physical activity among children, visit kindercare.com.


SOURCE:
KinderCare

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Way to upgrade your remote workspace

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(Family Features) With remote and hybrid work schedules here to stay for many Americans, it’s important to have a space dedicated to comfort and productivity. The initial transition to remote work may have involved setting up an impromptu workstation at the dining room table but creating a long-term, functional home office can be one of the first steps to increasing efficiency, focus and productivity.

Whether your work area is a spacious room, small den or desk in a quiet spot in the house, these ideas can help you create a space where you enjoy working.

Select the Perfect Location
While some remote workers have a spare bedroom or den they can dedicate as a home office, others may need to create a multiuse area in which office space occupies another room, such as the dining room, family room or basement. If you have several options for your workspace, consider how lighting and sound may impact your ability to focus.

For example, positioning your desk near a window can help increase your mood and reduce boredom. Similarly, if possible, choose a location where noise from other family members moving around or traffic outside will be less of a distraction. Earplugs or background noise can help drown out sounds if you’re restricted to a specific location in your home.

Keep Color in Mind
Colors can influence productivity and mood, so it’s important to consider them when designing or updating your workspace. Avoid white, which can lead to boredom, and instead choose a color scheme that can make a positive impact. Warm colors like red or orange can increase energy; blues are relaxing and can help keep blood pressure down; and green can help reduce stress.

An on-trend option like the Granny Chic Home Office from Wellborn Cabinet, Inc., can be set up in nearly any area of the home to create a stylish workspace. Featuring Premier Series cabinets with Napa doors in an olive finish and satin nickel hardware, this desk and hutch also includes base and crown moulding to help set it apart as a space devoted to productivity. Plus, accessories like a wastebasket pullout, drawer inserts and dividers, and tiered organizers can make organization easy.

Choose a Desk and Chair
Start by measuring your space to see how large of a desk you can accommodate then decide between a traditional desk or trendy adjustable-height version, which can allow you to sit and stand throughout the workday and has been shown to provide health benefits in addition to increasing work performance. An ergonomic chair with a padded seat and armrests is also a must-have to provide lumbar support and increase comfort while seated.

Find Storage Solutions
Storage is one of the most critical aspects when designing your home office. To avoid clutter and keep documents and other items organized, consider options such as built-in cabinets and shelving, base cabinets with desk file drawers, utility cabinets and wall bookcases. You can even customize your cabinets and choose from a wide selection of styles including traditional, transitional, casual, formal, contemporary or eclectic with options from Wellborn Cabinet.

Add Plants and Decor
Office plants provide numerous benefits, including improving air quality and increasing productivity. In fact, a study published in the “Journal of Environmental Horticulture” found productivity increased 12% when workers performed a task on a computer in a room with plants compared to those who performed the task in the same room without plants. Low-maintenance species such as orchids and succulents also produce a pleasant aroma and earthy atmosphere to decrease stress.

In addition, consider your space’s decorations if you will be conducting video calls. If your home office doesn’t have much natural light, place a light source behind the camera. While the background for your calls should be relatively neutral, a mural or art on the walls or shelves can complement your professionalism and add a creative touch to your space.

Find more home office inspiration at Wellborn.com.


SOURCE:
Wellborn Cabinet, Inc.

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Resilient flooring trends for spring remodeling season

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(Family Features) If the idea of a spring remodel brings equal parts intrigue and dread, starting with your flooring can make the process more appealing. For example, sustainable, resilient flooring comes in a variety of options to both your budget and personal style.

Resilient flooring is a durable type of flooring that includes rubber, linoleum, cork, luxury vinyl tile or sheet vinyl, among others. Increasingly popular in homes across the country, resilient flooring options from Beautifully Responsible partners are designed with indoor air quality and other important performance factors in mind, but they’re also built to stand up to the rigors of everyday life.

Consider these five home flooring trends for 2023 to help you create a tailored space at home and take the next step by visiting the Design Inspiration section of beautifullyresponsible.com to explore real-world design examples.

1. Classic Hardwood with a Resilient Twist

Ideal for kitchens, dining rooms, hallways and home offices, hardwood designs create a timeless foundation for your home with the ability to evolve with your tastes. When you go the resilient flooring route, you’ll find design options for everything from dramatic walnut to stately mahogany. Plus, options like luxury vinyl tile and plank are modular, making installation a little easier for DIYers.

2. Modern, Stone-Look Flooring

When it comes to resilient home flooring, stone style designs don’t just look sturdy, they’re durable, too. For example, slate-inspired tiles can add effortless class and character to high-traffic rooms that are cleaned often, such as dining rooms and mudrooms. 

Stone-look resilient flooring also gives your floors a stronger ability to adapt to rooms like kitchens and bathrooms, which often see fluctuations in temperature and moisture. Rigid-core flooring, for example, is one of the fastest growing categories of resilient flooring due to its comfort, durability and ability to resist water.

3. Large Format Tiles

Functional rooms like the kitchen are often the heart of the home where people meet to share the adventures of their days. They also often see a lot of dirt, moisture and accidental spills. However, resilient home flooring installations are resistant to scratches and stains, ideal for homes with small children and pets. Plus, they are easy to clean without the need for harsh chemicals and there’s no grout to maintain. Many resilient flooring options are also available in water-resistant or waterproof varieties.

An option such as large-format tile, including the sheet vinyl category of resilient flooring, can also create the illusion of space in basements, laundry rooms, mudrooms and other areas, making them appear more expansive.

4. Statement Designs

Just like a statement piece ties together the perfect outfit, a statement floor can make an impressive focal point in the kitchen, bathroom, basement, laundry room or mudroom. With statement designs from Beautifully Responsible partners, the possibilities are nearly endless with a variety of styles such as Bohemian, Farmhouse, Mid-Century Modern, Minimalist Zen, Scandinavian and more that can appeal to homeowners with different tastes and preferences. Resilient flooring types like luxury vinyl tile and sheet vinyl are also available with textured surfaces to make an additional statement.

5. Cozy Spaces

If you’ve found a perfect statement rug, resilient flooring can create an ideal foundation underneath in family rooms, bedrooms, hallways or basements. Many resilient floors are built to provide comfort underfoot, absorb sound and make spaces accessible for all levels of mobility. Also look for third-party labels such as FloorScore to identify solutions for protecting the air quality in your home.


SOURCE:
Beautifully Responsible

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