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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) Transforming your bathroom into a modern oasis doesn’t require a large budget or a team of professionals. In fact, a few inexpensive DIY projects can significantly improve the look and feel of your bathroom, including replacing outdated fixtures with new, modern ones you can install yourself.
While installing a new faucet can seem daunting, with the right tools and a little patience, it’s a relatively simple task that can refresh the look of your bathroom and improve functionality.
Before you begin, gather the necessary tools – an adjustable wrench, basin wrench, plumber’s tape and putty or sealant – then consider this guidance to easily transform your space and achieve a professional finish.
Prepare Your Workspace
Clear the area under the sink to provide ample workspace. Turn off the water supply valves by rotating them clockwise. Place a bucket under the faucet connections then open the faucet to let any remaining water drain out. If your sink has a pop-up drain assembly, remove it to give yourself more room to work.
Remove the Old Faucet
Using an adjustable wrench, disconnect the water supply lines. Once disconnected, use a basin wrench to loosen and remove the nuts securing the faucet. Gently lift the old faucet out of its mounting hole, using a putty knife to carefully pry it free, if necessary. Then clean the area to remove any residue and ensure a good seal for the new fixture.
Install the New Faucet
Apply a bead of plumber’s putty or a ring of silicone sealant around the base of the new faucet. Insert it into the mounting holes on the sink. From beneath the sink, secure the faucet in place with the provided nuts, tightening them using a basin wrench. Reconnect the water supply lines to the corresponding hot and cold inlets on the faucet. Turn the water supply back on to check for leaks. Adjust as necessary to ensure a tight fit. Finally, reattach the pop-up drain assembly if you removed it earlier.
Find more DIY projects to improve the aesthetics and functionality of your home at eLivingtoday.com.
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(Family Features) As days grow shorter and temperatures begin to dip, it’s the perfect reminder to begin preparing your home for winter. A little effort to winterize now can prevent costly repairs, improve energy efficiency and keep your family warm and comfortable even after the first snowflakes fall.
1. Service the HVAC System
Before you need to rely on your furnace or heat pump, schedule a professional inspection. A tune-up can extend your system’s life and lower energy bills. Also remember to replace filters and clean vents to ensure your system is running efficiently.
2. Seal Doors and Windows
Drafty windows and doors are some of the most common culprits of heat loss. Check for gaps, cracks or worn weatherstripping and seal them with caulk or foam, if necessary. Adding thermal curtains or door sweeps can also help block cold air and keep your home warm inside.
3. Clear Gutters and Downspouts
Clogged gutters can lead to ice dams, roof leaks and water damage. Clear leaves and debris, and ensure downspouts direct water away from your foundation, which can help prevent additional problems when snow melts and refreezes.
4. Protect Pipes
Frozen pipes can burst and cause major damage. In basements, attics and crawl spaces, insulate any exposed pipes, and consider letting faucets drip slightly to keep water moving on especially chilly nights.
5. Reverse Ceiling Fans
During the winter months, ensure your ceiling fans are spinning clockwise, which helps push warm air down, improving heat circulation and comfort in your living spaces. Don’t forget to flip them back to counterclockwise in the spring to move hot air upwards to keep your home comfortable.
6. Test Smoke and Carbon Monoxide Alarms
Heating systems, fireplaces and space heaters, which are more often in use during the winter months, can increase fire and carbon monoxide risks. Test your detectors, replacing batteries if necessary, and ensure you have a carbon monoxide detector on each level of your home and a smoke alarm outside each sleeping area.
7. Winterize Outdoor Faucets and Hoses
To prevent freezing, shut off outdoor water valves and disconnect garden hoses. For extra protection, consider installing insulated faucet covers.
Don’t wait until the first snow to prepare. Visit eLivingtoday.com for more tips to keep your home cozy all winter long.
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eLivingtoday.com
(Family Features) In today’s world, it’s rare for kids to hand over a few crumpled dollar bills for a purchase. Most transactions happen online or with a tap of a card, which can make money feel less tangible to the next generation. However, that shift doesn’t mean financial lessons have to get lost – it just means they should be taught differently.
From budgeting for a favorite purchase to learning about investing, the digital landscape provides ample opportunities to help kids build smart habits.
Teach Real-World Money Management with Digital Tools
One way to start is with a kid-friendly debit card connected to an app. These accounts allow children to manage their own spending while parents monitor activity. Being able to check balances in real time – and seeing the impact of a purchase immediately – helps kids understand budgeting in a hands-on way. When the balance gets low, the lesson is clear.
Parents can also use digital purchases as teachable moments. A $10 virtual item in a game might sound appealing, but comparing it to something tangible, like a trip to the movies or a special snack, can help kids think about trade-offs and decide what’s worth the money.
Use Saving Goals and Compound Interest to Encourage Smart Habits
Saving is another concept technology can make more tangible. Setting a goal such as a new bike, a sports jersey or a piece of tech becomes more engaging when children can track their progress visually. Some apps even offer interest on savings, giving kids a first glimpse of how money can grow over time.
As children grow into teens, their curiosity about money often expands into investing. This can be an ideal time to open a custodial brokerage account and explore concepts like diversification, risk and long-term strategy. Purchasing fractional shares of companies they recognize can make the learning process relatable.
Teach Credit, Debt and Security Early
It’s also important to cover topics like credit, debt and security before kids start managing money on their own. Teens should understand how borrowing works, why paying bills on time matters and how to protect themselves from identity theft. In some cases, freezing a minor’s credit until they are older can be a smart precaution.
Keep the Conversation Going
Above all, money lessons should be an ongoing conversation. Asking kids what they’re hearing from friends, teachers or online sources can lead to meaningful discussions and create teachable moments.
The tools may have changed, but the goal remains the same: helping kids develop the skills and confidence to manage money wisely. By meeting them where they are in the digital world, parents can make financial lessons real, relevant and lasting.
Visit schwabmoneywise.com for more ideas on how to help kids start saving, investing and more with videos, quizzes and articles designed especially for teens.
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