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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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For the birds: Feed ’em in fall to welcome them back in winter

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(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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Tips to plan a family-friendly winter getaway

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(Family Features) If your family suffers from the winter doldrums, a dose of sunshine may be just what they need. Give everyone something special to look forward to this year by planning a vacation that appeals to kids, parents and grandparents alike.

Leaving the country for breathtaking views and relaxation at the world’s beautiful beaches may provide the boost of vitamin D you need, but it also requires a little extra preparation compared to the average road trip. Ensure your memory-making excursion goes off without a hitch by doing the legwork in advance to avoid unnecessary stress.

Plan your winter getaway with these tips for an elevated experience.

Strategize for Stress-Free Travel
As you prepare for your next adventure, planning ahead is essential to ensure a seamless experience, especially when traveling internationally and for long-haul trips. Whether you’re seeking a dreamy beachfront destination or a European vacation, collaborating with a travel advisor as your first step in the planning process can significantly enhance your trip since they provide expert help and ideas tailored to your preferences. One of the key advantages is that their services typically come at no cost to you, allowing you to relax while the experts handle everything from finding the best deals to managing essential travel requirements, such as country entry guidelines and passport regulations.

Discuss Resort Options
Once you’ve settled on a location, it’s time to go over the lodging options with your travel advisor. Whether you’re looking forward to digging your toes into the sand or craving a little adventure, it’s always best to identify what matters most for your trip. Researching resorts that offer a true “all-inclusive experience” can help ease stress and keep the focus on family fun. Consider stays at Sunscape Resorts & Spas offer features like a kid’s check-in experience, welcome treats, connecting rooms and more, all designed to “Press Play” on Unlimited-Fun. This way, your family’s needs and wants are covered – with best-in-class service, all access restaurants, unlimited drinks and a supervised Explorer’s Club for Kids while teens have their own space at the Core Zone Teens Club.

One way to maximize your resort stay is to sign up for hotel loyalty programs, like World of Hyatt’s loyalty program, to earn rewards and benefits that can go toward free nights, exclusive member rates, upgrades and more. Plus, travel advisors who book directly can input your loyalty information to help ensure you get the most out of your getaway.

Ask Your Advisor for Insights
Travel advisors commonly visit locations and resorts, so they know the destinations inside and out. Ask your advisor if he or she has traveled to your desired vacation spot and consider the expert advice offered, from must-have meals to recommended attractions and excursions.

Consider Travel Packages
One way to make memories that last a lifetime is to explore any special family packages that are available at the time of booking. For example, Sunscape Resorts & Spas is offering exhilarating getaways perfect for the kid in everyone with the Press Play on Fun package available through Dec. 20 for travel through Aug. 16, 2025.

It includes a delightful welcome amenity and exclusive gift, breakfast in bed, a reserved spot by the pool or beach and a family photo on the beach to capture all those smiles. The resorts take family fun to the next level in vibrant, colorful beachfront locations in Mexico, Curaçao and the Dominican Republic.  

Make a Beach Trip Checklist
If you’ve ever traveled so much as an hour or two away from home, you know how important a checklist is to avoid leaving behind any must-haves. A trip to the beach calls for an entirely new set of essentials.

If you plan to spend time at the beach (or pool, for that matter), consider adding these items to your suitcase:

  • Swimsuits
  • Sunscreen
  • Bug spray
  • Hat and sunglasses
  • Beach- or pool-friendly shoes
  • Goggles
  • Books or magazines
  • Beach bag
  • Reusable water bottle or tumbler
  • Waterproof phone case
  • Cash for tips

To start your winter vacation planning, visit hyattinclusivecollection.com/en/resorts-hotels/sunscape.


SOURCE:
Hyatt Corporation

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Financial literacy 101

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(Family Features) Financial anxiety is on the rise in the United States, making financial literacy – simply put, the ability to understand and effectively utilize various money management practices including budgeting, investing and saving among others – as important as ever.

In fact, 36% of the U.S. general population feel anxious about their current financial situations with 26% feeling strained, according to research from World Financial Group. Taking steps to become more financially literate and manage money more effectively can help.

While there isn’t one “right” way to gain financial literacy, these steps can help grow your understanding and confidence around your finances.

  1. Understand Your Finances

    Understanding your finances and how your financial decisions impact your future self is essential for making appropriate choices.  Without this understanding of your income and expenses, you become vulnerable to making the wrong decisions and can put yourself at greater risk in the future.

    To further expand your knowledge base, consider taking a financial literacy quiz to test your understanding of concepts such as compounding interest, inflation and risk diversification. If necessary, don’t be afraid to seek the advice of a professional before making important financial decisions.
  2. Take Control and Plan with Confidence

    To take control of short- and long-term financial priorities and aspirations, individuals should plan ahead. Establishing these goals is the first step to effective planning, whether lifestyle goals, hopes for retirement or specific items you wish to acquire, such as a new vehicle or home. This approach provides a target for building your savings and protection plans.
  3. Prepare and Plan for Life’s Unexpected Events

    If not adequately prepared, unexpected events can have catastrophic impacts on household finances. For example, having to leave the workforce early due to illness could mean years of lost earning power, which could impact your short- and long-term priorities and aspirations. Therefore, it’s essential to ensure backup plans, such as a retirement account or life insurance that includes income protection if unable to work, are in place, if the unexpected happens. This “cushion” can contribute to greater confidence in your future financial outlook and stronger feelings of security going into waves of economic uncertainty.

Test your literacy to assess your understanding and confidence around finances at WorldFinancialGroup.com.

Photo courtesy of iStock


SOURCE:
World Financial Group

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