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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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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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Handy hacks to take the stress out of holiday hosting

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(Family Features) Hosting is a big responsibility, especially during the holidays when the pressure is on to create a magical and memorable experience. Planning a menu and decorating for the occasion is just the start.

Hosting also means ensuring all dishes are cooked to perfection and kept warm until serving time, guests’ dietary needs are considered and table conversation topics are ready. Then, of course, there’s the post-dinner cleanup.

This holiday season, consider these tips to help tackle your hosting duties with grace and create an event you can enjoy, too.

Request RSVPs
Planning a party is even more complicated when you don’t know how many guests you’ll be entertaining. If you create a guest list and ask invitees to let you know their plans, you’ll have a better idea whether you should double your favorite dishes. You’ll also know who has special dietary needs and be able to plan a seating chart that puts everyone at ease. Be sure to include a date that gives guests a specific RSVP deadline and plenty of time for you to adjust your plans before the big day.

Meal Prep as Much as Possible
Get as much of the food preparation out of the way ahead of time as you can. Some dishes can be prepared and even cooked ahead of time so you’re just reheating, but you can also save a lot of time by organizing ingredients for the dishes that must be prepared the day of the event. A good rule of thumb: If it doesn’t have to wait until the day of the party, do it before. That frees up your time so you can handle any unexpected hiccups that arise without piling on more stress.

Simplify the Cleanup Situation
Rely on tried-and-true products that do the heavy lifting for you when it’s time to clean up after the meal. An option like Finish Ultimate Dishwashing Detergent cleans dishes in tough conditions, even without pre-rinsing, so you can focus on what matters during this time of year: spending more time with your loved ones. It removes tough stains like grease and cheese, as well as common holiday dishes like apple pie and mac and cheese. An added bonus: Since you don’t need to pre-rinse, you’ll save up to 20 gallons of water per dishwasher load.

Create Designated Spaces
Guests are likely to arrive with items in hand that need a place to go, like coats, shoes, handbags and gifts. Avoid clutter by determining ahead of time where you want to put these items. If you have a coat closet with space, that’s a good solution, but a nearby bedroom may also be an option. Especially if you’re hosting a potluck meal, be sure to plan ahead for where each course should go, with appetizer bars, dessert tables and a countertop with protective pads for warm foods.

Send Guests Off with a Parting Gift
A memorable event can be made even more so when guests have a token to take with them. Send everyone home on a happy note with a simple gift like a prewrapped holiday treat. Be sure to tuck these away someplace near the door so they’re a pleasant surprise you can access easily when guests begin to make their exits.

Find more ways to tackle holiday messes and make hosting duties a breeze by visiting finishdishwashing.com.

Post-Party Cleaning Tips

  1. Don’t be afraid to ask for help, especially from your partner or children.
  2. Prep your table the night before. Get sparkling dishes and glassware by using a product such as Finish Jet-Dry Rinse Aid, which assists in drying and helping your dishes shine when used in the rinse cycle.
  3. Start by collecting trash and clutter. Throw trash away and create piles of items that need returned to their proper places. Remember that taking a few extra minutes to organize things like seasonal decor as you go can help make next year’s event easier.
  4. Complete each job before moving to the next. Some prefer to tackle a room at a time while others prefer to finish a specific chore, like sweeping the floors throughout the house, before moving on.

Be realistic about what must be done before you sleep. Some tasks really do need immediate attention, like collecting and emptying glasses that could be spilled and safely storing leftover food. The rest can likely wait until after you get some rest.

Jalapeno Cornbread Mac and Cheese

Jalapeno Cornbread:

  • 1/2 cup butter, melted, plus additional for greasing pan
  • 1 cup medium grind cornmeal
  • 1 cup flour
  • 1 teaspoon baking powder
  • 1/2 teaspoon baking soda
  • 3/4 teaspoon salt
  • 1 cup buttermilk
  • 2 eggs
  • 1 cup corn
  • 1/2 cup chopped jalapeno (about 2 large jalapenos)

Mac and Cheese:

  • 1/2 pound dry macaroni
  • 2 tablespoons butter, plus additional for greasing pan
  • 3 tablespoons flour
  • 2 cups milk
  • 2 teaspoons Dijon mustard
  • 12 ounces shredded cheese
  • 1/4 teaspoon salt
  • pepper, to taste
  1. To make jalapeno cornbread: Preheat oven to 400 F. Butter 8-by-8-inch baking pan.
  2. In mixing bowl, combine cornmeal, flour, baking powder, baking soda and salt.
  3. In another bowl, whisk buttermilk, eggs, 1/2 cup melted butter, corn and jalapeno.
  4. Add half the liquid ingredients to dry mixture, stirring just until blended. Add rest of liquid and stir until just blended. Pour batter into prepared pan and bake 30-35 minutes, or until knife inserted in center comes out clean. Set aside to cool.
  5. To make mac and cheese: Bring large pot of water to boil. Add macaroni and cook according to package directions. Drain under cold water and set aside.
  6. Preheat oven to 350 F. Butter 9-by-9-inch square baking dish.
  7. In heavy saucepan, melt 2 tablespoons butter. Add flour and whisk over low heat 3-5 minutes, making sure not to brown.
  8. Whisk in milk and cook over medium heat, whisking often until mixture thickens, about 5 minutes.
  9. Stir in mustard and cheese. Add salt and pepper, to taste. Add macaroni and stir until noodles are coated with cheese mixture. Pour mixture into prepared pan. Use back of spoon or spatula to even out mixture in pan.
  10. Bake 25 minutes until mixture is bubbly.
  11. Remove from oven, turn oven to broil and place rack on second from top. Break up about 1/3-1/2 of the cornbread into small pieces; place even layer of broken-up cornbread over top of mac and cheese. Put mac and cheese under broiler until lightly browned. Serve immediately with remaining cornbread or make ahead and warm before serving.

Tip: For spicier cornbread, keep some jalapeno seeds intact

Photos courtesy of Shutterstock (woman serving meal and family dining together)


SOURCE:
Finish

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5 tips for organizing your home office

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(Family Features) When temperatures creep up again, it signals time for an annual tradition: spring cleaning. While big projects like windows are hard to overlook, don’t forget smaller areas that need attention, too, such as your home office.

Making sense of a year’s worth of paperwork and clutter can take some serious time, especially as many people have been working from home more than normal, but getting organized can help you tackle home management tasks more efficiently. Making the office a priority can reduce frustration when it comes to spending additional time in your office while working from home.

These five tips can help get you started:

  1. Make sure you have furniture that can adequately store your stuff, including plenty of space for files, reference books and computer equipment. Pieces need not be costly to be functional and there are plenty of attractive options available online and at both small and major retailers.
  2. Arrange the space with its intended use and your own work style in mind. For example, if you don’t need ample space to spread out over a large, flat work area, eliminate that space – it’s simply an invitation for clutter.
  3. Place items you rely on frequently, such as a calculator or ruler, within arm’s reach so they can easily be put away between uses. Capture these items in containers and bins to keep the space looking neat and free of clutter.
  4. Establish a filing system that lets you keep track of important papers you need to keep and have a shredder handy to help you discard any sensitive documents. Whether you alphabetize, color code or use some other method, group paperwork into segments for categories such as bills, banking, health care, auto, insurance and so on for easy access in the future.
  5. Tangled cords can make even the most organized spaces look messy, and they may pose a fire or tripping hazard. Get control of your cords by storing devices you don’t use regularly and securing the remaining cords with twist ties or clips. Remember to use a surge-protected power strip to minimize the chance of damage should a power surge occur.

Find more tips to make your workspace tidy and organized at eLivingtoday.com.

Photo courtesy of Pexels


SOURCE:
Family Features

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