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SMA and the new miracle drug Spinraza
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
(Family Features) Gift-giving during the holiday season shouldn’t be stressful. In fact, finding gifts for your loved ones should be as much fun as giving (and receiving) them.
No matter if you’re shopping for the fashionista, the foodie, the workout warrior, the tech expert, the beauty-focused or nearly anyone else on your list, this helpful guide of gift ideas to match a variety of personalities and interests can make the holiday season extra special for both the giver and recipient.
Find more holiday gift-giving inspiration at eLivingtoday.com.
Give the Gift of Skin Nourishment
This holiday season, give your loved ones the gift of brighter, healthier-looking skin. Clinically formulated by experts and health care professionals for every skin care need, Medline Remedy products combine advanced skin care science with gentle, therapeutic ingredients. The proprietary Remedy Nutrient Complex nourishes, soothes and supports moisture balance while caring for even the most sensitive skin. Find the full product line from the No. 1 skin care brand in health care (according to Clarivate health care market data through December 2023) at Amazon.com and Walmart.com.
Power Productivity and Connection
Perfect for that special someone who’s always connected, fuel his or her productivity with Galaxy AI on the Samsung Galaxy Z Fold6 powered globally by Snapdragon 8 Gen 3. Enjoy multitasking on up to three windows using multi-active Window, speak with someone in another language with live translations you both can see and experience desktop-level gaming with ray tracing. Plus, your loved one can enjoy ultra-fast connectivity for all that chatting, social networking, gaming and more with Qualcomm FastConnect 7800. Find more information at Bestbuy.com.
Share Memories with Loved Ones
With sleek designs to fit nearly any decor, a digital picture frame is a thoughtful way to share and display a continuous slideshow of photos on a mantel, bookshelf or desk. Simply upload pictures via USB, SD card, Wi-Fi or a frame-specific app, and your loved one can relive special moments every day. Some models also offer video playback, calendar implementation and automatic cropping, brightness and power-saving functions, making them a multifunctional addition to any home or office space.
Provide Relief and Relaxation
Ideal for athletes, fitness enthusiasts or anyone with a physically demanding lifestyle, a handheld massage gun can help alleviate muscle tension, improve circulation and speed up recovery after workouts, making one an optimal gift for anyone on your list who could use a well-being boost. Easy to use, these compact devices use percussive therapy to target sore muscles and provide deep tissue massage by using various attachments and adjustable speed settings to target different muscle groups and customize the massage experience.
Take Tunes Anywhere You Go
Whether your loved ones enjoy outdoor adventures or relaxing at home, Bluetooth speakers are a perfect gift idea to enhance the listening experience no matter where they are. With a variety of sizes and styles available, you can find something that fits every music lover’s taste, from compact and portable options to larger, high-fidelity models for home use. Many speakers also include additional features like waterproofing, floatability, long battery life, power banks for external device charging and voice assistant integration.
Upgrade Beauty Essentials
Whether you’re shopping for a beauty novice or a seasoned pro, makeup can make for a quick and easy stocking stuffer. Consider a curated set that includes items like mascara, lipstick, brushes, eyeshadow palettes and other tools to complete their beauty routine. Opting for a limited-edition holiday collection can add a festive touch to your gift. For a more personalized approach, create a custom kit tailored to the recipient’s preferences to provide joy and confidence well beyond the holiday season.
Photos courtesy of Shutterstock (family opening gifts, picture frame, massage gun, speaker, makeup)
SOURCE:
Medline Remedy
Qualcomm
(Family Features) Making money from everyday items in your home may be easier than you think. With a growing number of companies simplifying the process, turning unused items into cash has never been simpler.
These companies are part of the circular economy, where you get to make money from your items and feel good about it at the same time. By reselling items you don’t use, you can give these items a second home or repurpose them into something that has practical applications.
For example, unused gold and precious metal jewelry can be given a second home to or repurposed for vital technology sectors like health care. This reduces the need for environmentally taxing mining operations and gives these valuable resources a second purpose.
Whether it’s clothing, jewelry or tech, consider these simple ways to make extra cash by selling items online.
Sell Used Clothing
Some newer platforms offer a less hands-on approach to selling used clothing online. Unlike popular online platforms that require you to take pictures or create listings for your items, look for outlets that allow you to simply package your items and send them out with an insured label. This makes selling clothing online a breeze and reduces the potential headaches of dealing with buyers directly and managing listings.
Sell Unworn Jewelry
For precious metals like gold jewelry or silver jewelry, selling directly to a trusted buyer can provide a fast, secure way to unlock their value. Consider AlloyMarket.com, a company featured in trusted outlets like Forbes, NBC and US News & World Report that offers a streamlined process with free, insured shipping and no hidden fees or commissions. Unlike platforms that require complex listings or charge extra fees, you keep 100% of the quoted price. On average, customers earn $1,700 or more for gold jewelry and other precious metal items, offering a straightforward, easy and rewarding way to sell unused valuables.
Sell Designer Bags
If you have any designer bags at home, look for platforms that let you sell handbags directly to them and provide upfront estimates before you ship your items. Some platforms provide free insured shipping and marketplaces where you can buy designer handbags at discounted prices.
Sell Books You’ve Already Read
While this likely won’t make you a fortune, selling used books is a simple way to make some extra cash and help preserve the environment. College students in particular can benefit from upfront estimates and free shipping or the ability to trade in used books for ones they’ll need next semester. Plus, some platforms also offer books for purchase at heavily discounted prices.
Sell Tech After Upgrading
If you upgraded phones recently or have a used phone just collecting dust, get an upfront estimate for your phone from a trusted site. Some buyers provide free shipping and, with upfront estimates, you know exactly what you will get for your used phone before sending it in.
Sell Old Furniture
Turn your unused furniture into cash by listing items like sofas, tables or chairs on local marketplaces or apps. Clear photos and detailed descriptions can help attract buyers nearby, saving you the hassle of shipping. Selling old furniture not only earns extra money but also helps reduce waste by giving items a second life.
To learn more about how you can get a free, no-obligation estimate for gold jewelry or other precious metal items, visit AlloyMarket.com.
SOURCE:
Alloy Market
(Joan Casanova) Humans aren’t the only ones who look forward to autumn harvest. Fall brings a bounty of natural foods for our feathered friends, too. But while they’re feasting on fall’s cornucopia of delicacies, birds are also planning ahead, taking note of yards with bird feeders that can help them weather winter’s cold.
Many of birds’ favorite foods are actually more abundant in fall. Summer weeds ripen with seeds by October. Many berries only begin to emerge in late summer or early winter, and insects are plentiful. You may think there’s no need to feed birds during the fall, but if you want them to find your home in winter, start feeding in autumn.
The birds who visit feeders in fall are scouting, becoming familiar with feeding stations and making decisions on which backyards they’ll visit this winter. The feed you put out in fall lets birds know they’ll be welcomed and fed in your backyard when seriously cold weather arrives – and they no longer have the luxury of exploring for food.
Winter weather is hard on birds. Their calorie requirements increase, food becomes hard to find, snow covers up seeds and ice storms seal away tree buds and wild fruits. Tiny birds must eat one-third to three-quarters of their weight each day. When temperatures dip below zero, easy meals at a feeder can mean the difference between life and death.
An important rule of fall and winter feeding is to be prepared. By stocking up now on premium bird seeds and feed, bird lovers can help secure a wholesome food source without having to brave stormy weather.
It’s important to stock your feeders with high-quality foods that provide birds with the most fat, nutrients and energy. Look for a feed like Cole’s that packs nutrition, preserves freshness and gives you the most feed for your dollar. For example, Cole’s Wild Bird Products’ Oil Sunflower is more than 99% pure and cleaned four times to ensure there are more seeds and fewer sticks in each bag. Feed is also nitrogen-purge packaged, just like potato chips, to ensure freshness and insect-free feed.
In addition to seed, serve up some suet either in the form of Suet cakes for non-seed eating birds or suet mixed with seed. Consider Cole’s Nutberry Suet, which is a seed blend mix of premium fruits, preferred nuts, nutritious insect suet kibbles and whole-kernel sunflower meats that appeals to fruit and insect-loving songbirds. Or try Suet Kibbles, bursting with berry flavor and loaded with energy for increased stamina. These feed choices provide fat and a high-protein energy source to assist wild birds in weathering winter and may actually boost their chance of survival.
Just as birds need food year-round, they also look for water. This can be tricky in regions where water spends the winter as ice, but bird lovers can still help in a few ways. Experts suggest leaving icicles on the eaves to provide a regular source of water for birds that drink drops as the icicles melt. Birds are drawn to running water sounds, so spritzers or small fountains are beneficial. In the winter, try using quality bird bath heaters to keep water from freezing, plus they’re more convenient than setting out water every day.
Don’t worry about the birds if you must leave home for a while in winter. Birds are familiar with food sources disappearing. It might take them a while to rediscover your feeders when you return, but they’ll be back, grateful for your assistance.
For more ideas to help birds eat well through winter, and to learn about more feed choices, visit coleswildbird.com.
Photos courtesy of Cole’s Wild Bird Products
SOURCE:
Cole’s Wild Bird Products
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