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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) A clean grill can enhance the flavor of your food, making regular grill maintenance an essential part of your outdoor cooking routine.
Grills, especially those exposed to the elements, can accumulate dirt, rust and food residue that can affect performance and safety. Plus, residual char and grease can impart unwanted flavors and even lead to flare-ups.
Once you’ve gathered the right tools – a sturdy grill brush with stainless steel bristles, a scraper, a bucket of soapy water, microfiber cloths and grill cleaner or degreaser – consult this step-by-step guide to keep your grill in pristine condition, ensuring delicious meals every time.
- Preheat the grill for 15 minutes to loosen any stuck-on residue then turn it off and let it cool slightly.
- Ensure the gas supply is turned off before cleaning.
- Remove the grates and scrub them thoroughly with a grill brush and warm, soapy water. Rinse and let dry.
- Clean burners by wiping them with a damp cloth.
- Scrape the inside of the grill to remove any debris and use a vacuum to collect loose dirt and ash.
- Wipe down the exterior of the grill with a microfiber cloth and grill cleaner.
- Reassemble the grill once all parts are dry and give it a final wipe down.
In between deep cleanings, remember to clean your grill grates immediately after cooking while they are still warm to remove food particles and grease. Find more tips for the grill and beyond at eLivingtoday.com.
Photo courtesy of Shutterstock
SOURCE:
eLivingtoday.com
(Family Features) Thanks to the explosion of ecommerce over the past couple decades, consumers can find virtually any product or service they can think of online. In fact, the consumer ecommerce market is expected to approach $6 trillion by 2027, according to the International Trade Administration, up from roughly $4 trillion in 2024.
A diverse collection of product segments is driving this growth, including everything from fashion and furniture to food and beverage. While major marketplace retailers still lead the category, ecommerce has become commonplace among small businesses, too. In fact, by the end of 2023, an estimated 80% of small businesses had at least basic ecommerce capabilities, according to a report by Digital Commerce 360.
However, small businesses are grappling with challenges such as inflation, supply chain issues and keeping pace with major retailers, among others, that are driving a variety of ecommerce trends in 2025 and beyond, including:
Video Content
Spurred by social media, video content is in high demand on ecommerce sites, too. Videos that explain how to use products, offer tips for using them and demonstrate projects that were completed using a product all earn favor with shoppers. In addition, videos that highlight product features, video reviews on social media and “live shopping events” on the social channels of ecommerce retailers can provide a more appealing interactive experience for shoppers.
Inclusive of the “live shopping events” trends, livestreaming is often popular among consumers as it can create a sense of FOMO (fear of missing out), leading to enhanced brand loyalty and engagement. Short-form videos sweeping social media also drive engagements and offer a quick, appealing way to demonstrate new or popular products.
Personalized Products
Ecommerce provides opportunities for shoppers who appreciate buying products that are uniquely their own. Online buying platforms that allow for customization of products such as shoes, clothing and drinkware can create buyer engagement and earn loyal shoppers who know they can purchase the items they want exactly to their own specifications. In fact, a survey by McKinsey Insights found 80% of loyal customers prefer shopping with brands that offer tailored choices and personalized experiences. From color selection and accessories to performance variations, custom options can help create a highly personalized shopping experience that allow buyers to interact more directly than they would for a standardized transaction.
Beyond the initial purchase, customized reports and shipping notifications are also becoming the norm. Shippers can alert customers to their products’ delivery status – including any delays or changes – via email, text, video message or, in some cases, a customizable dashboard where consumers can view incoming shipments tied to their account or address, request a different delivery time or location, pre-sign for packages and more.
Micro Purchasing Moments
You may think phenomena like impulse buys or convenience purchases are reserved for brick-and-mortar stores, but micro-purchasing trends suggest otherwise. These purchases are typically made by someone looking for a quick solution or information in a hurry from a mobile device, such as comparing two or more similar products and clicking a “buy now” link, ordering and paying for food ahead of time to skip the line, making a hotel or excursion reservation while traveling or looking up movie showtimes and purchasing tickets from the same page. Ecommerce sites that can establish themselves as a resource, make information easy to digest and simplify the purchasing process are earning customers (and revenue).
Flexible Payment Options
Online purchases were once limited almost exclusively to credit card purchases, but over time, businesses have granted greater flexibility to shoppers when it comes to collecting payment. While this trend has been growing for several years, many contemporary ecommerce sites now accept credit or debit cards, online checks, digital wallet and mobile payment services, cryptocurrency and even installment payments via third-party providers. By 2029, the third-party payment market is expected to almost double from $62.5 billion in 2024, according to findings from Mordor Intelligence.
Simplified Shipping Options
Evolving technology isn’t just improving the browsing and purchasing side of ecommerce; shipping operations are also seeing enhancements. For example, ShipAccel, a digital platform designed by Pitney Bowes, simplifies and enhances shipping operations with advanced ecommerce technology. The platform empowers early ecommerce brands to ship like larger companies with access to discounted carrier rates; more than 80 integrations including leading marketplaces, data and insights to help make smarter shipping decisions; branded tracking; and return capabilities. It features a collection of apps, widgets and application programming interfaces to easily configure new workflows and seamlessly meet the demands of business growth.
“As ecommerce becomes a mainstay, shippers must take a technology-first approach, utilizing platforms that can grow along with the business and partnering with providers who offer deep expertise in the segment,” said Shemin Nurmohamed, president of Sending Technology Solutions at Pitney Bowes. “As a result of using technology like ShipAccel, ecommerce shippers can save money, enhance operational efficiencies and delight customers – all of which support the business’ bottom line.”
Find more shipping support for your ecommerce business in the coming year at shipaccel.com.
Easy ECommerce Shipping Tips
Whether you’re a buyer or a seller, getting smart about shipping can help improve your ecommerce experience.
Be cost-conscious. Buyers obviously benefit from lower costs, but as a seller, managing shipping costs means more revenue. Volume discounts and options for lower prices with longer shipping times can make a bigger impact than you might expect. A shipping partner that has pre-negotiated discounted rates with carriers can deliver significant savings to your business, too.
Reduce package sizes. Using boxes or padded envelopes that closely fit the product being shipped can reduce weight and therefore the cost to send it to the customer. Also avoid excess packaging that adds bulk, which adds cost and waste.
Utilize advanced tracking tools. Keep tracking information for everything you ship or buy so you can monitor its safe delivery or, if problems arise, promptly identify and correct the issue. An option like ShipAccel uniquely provides branded tracking updates so your business stays front and center with your customer from click to porch.
Photo courtesy of Shutterstock (woman using laptop)
SOURCE:
Pitney Bowes
As spring approaches at jet speed and you start thinking about planting mixed containers but perhaps with a little fear of the partnerships keep in mind three-part harmony. It certainly works in church music, and it is perfect for gardeners too. In the world of garden color, we call it triadic harmony.
Simply put triadic harmony is three colors spread equal distance apart on the color wheel. So in the mixed container or basket this would be three colors of flowers to create pleasing harmony.
Rowe Farms is not only one of my favorite growers of seasonal flower color, but their Facebook page is a textbook on design ideas.
Read the full Garden Guy column in the Thursday Bowie News.
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