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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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Teach and inspire your kids by exploring your family history

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(Feature Impact) During back-to-school season, education is naturally at the forefront of most parents’ minds. While a lot of important learning is accomplished in the classroom, there are so many opportunities to continue challenging and developing children’s minds and hearts in family life as well. Learning about history together is a practical way to inspire deep, meaningful conversations about the world, whether from books, documentaries or visits to museums.

Watch this video to learn more

https://youtube.com/watch?v=DyN0vfJD68g%3Fsi%3DLRIsbHaa3M2iEXq9%26controls%3D0

Now is an opportune time to explore the story of Anne Frank, a Jewish teenager evading Nazi capture during the Holocaust. Families can read her famous diary together then visit “Anne Frank The Exhibition,” presented by the Anne Frank House at the Griffin Museum of Science and Industry. This comprehensive exhibition immerses visitors in the context that shaped Frank’s life, from her early years in Frankfurt through her tragic death and how her father ensured her legacy. The centerpiece is the first full-scale recreation of the Annex where the Frank family and four other Jews hid during the Nazi occupation of the Netherlands. The exhibition, recommended for visitors ages 10 and older, is open through early 2027.

No matter what piece of history families choose to delve into together, they should take the time to discuss with their kids what they’re thinking and feeling about everything they’re discovering. Then together they can figure out what lessons from the past can be taken into the future.  

“Anne Frank ’s story is a powerful reminder of what happens when fear and hatred are
allowed to take root,” said Dr. Chevy Humphrey, Griffin Museum of Science and Industry
president and CEO. “At the same time, it reveals the quiet but enduring strength of
curiosity, creativity and resilience, values that sit at the heart of our mission. We hope this
exhibition offers meaningful moments of reflection for our guests, particularly young
people, and encourages them to think critically about their role in the world they are
inheriting.”

Learn more about the exhibit and other experiences that bring history and science to life at GriffinMSI.org.

    

SOURCE:

Griffin Museum of Science and Industry

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Expert entertaining advice for hosting summer soirees

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(Feature Impact) For summer hosts across the country, few pairings are as timeless and crowd-pleasing as wine and cheese. Approachable, easy to find and naturally complementary, these warm-weather favorites are a perfect fit for a variety of occasions.

At the end of the day, summer entertaining is about good food, good wine and creating a space where people feel welcome, according to sommelier Sam Capaldi, whose mission is to make wine fun and approachable.

“My ideal celebration is pretty simple: a few loved ones gathered on the patio, cheese boards in the center of the table, bottles of wine chilling on ice, music playing in the background and a card game that somehow gets way more competitive than anyone expected,” Capaldi said.

Whether it’s a backyard gathering with friends, a solo night watching reality TV or a spontaneous evening, Capaldi wants hosts to remember that the best pairings aren’t just what’s in the glass and on the board – it’s the people, moments and memories that come with them.

In partnership with Cracker Barrel Cheese, Capaldi is sharing simple tips for hosts looking to elevate their summer soirees without the hassle.

Make Entertaining Simple and Fun

The pressure to create the perfect tablescape, prepare an impressive meal and uncork an expensive bottle of wine can feel overwhelming. Instead, a simple text that says “Come over, I have wine and snacks,” can mean the world to a close friend or loved one.

One of Capaldi’s favorite reminders for hosts is they don’t need five different wines to serve alongside a cheese board. Instead, one or two are often more than enough. The key is choosing versatile wines that pair well with a variety of flavors and textures.

Create Memorable, Crowd-Pleasing Pairings

Elevate any gathering with some of Capaldi’s favorite approachable wine and Cracker Barrel Cheese pairings such as:

  • A refreshing white wine, Sharp White Cheddar drizzled with spicy honey and potato chips. The bright acidity of the wine cuts through the salty chips and rich, savory cheese, creating a fresh and balanced bite.
  • A fruity rosé, Extra Sharp Yellow and Sharp White Cheddar, garlic naan crackers, slices of prosciutto and a spoonful of strawberry jam. Rosé is incredibly versatile and plays well with the different flavors on the board, making it a perfect match for several different cheeses.
  • Pinot grigio, pretzels and Vermont Sharp White Cheddar. The citrus notes and the bright acidity of pinot grigio cut through the richness of sharp cheddar, while its crisp finish keeps your palate refreshed between bites. Salty pretzels also help highlight the wine’s fruit notes, making every sip taste a little brighter.

Use Seasonal Additions for a Special Touch

Summer offers an abundance of fresh produce and seasonal flavors that can elevate any gathering without overcomplicating the occasion. Capaldi recommends adding frozen fruit to wine, such as strawberries, peaches or mangos to whites and rosés. The fruit helps keep the wine cold without watering it down and adds a subtle burst of fruit flavor.

When it comes to cheese spreads, a jar of spicy honey can quickly become a go-to ingredient. For a sweet-and-salty combination, try drizzling spicy honey over cheese then pair with potato chips or pretzels so your snack board offers a little bit of everything.

For more summer entertaining inspiration, visit CrackerBarrelCheese.com.

Photo courtesy of Shutterstock (wine and cheese plates)

  

SOURCE:
Cracker Barrel Cheese

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7 tricks to ease back-to-school chaos

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(Feature Impact) Everyone could use a little more magic in their everyday lives – but when it comes to back-to-school season, “manic” often feels like the more accurate word. Between shopping for supplies, coordinating the family’s schedules and trying to make sure everyone is looking and feeling their best, there’s a lot going on this time of year.

While you may not be able to wave a wand and make all the stress disappear, you can use these tips and tricks – courtesy of the haircut magicians at Great Clips – to save time and add a touch of excitement to the back-to-school season.

//www.youtube.com/embed/4NSGXEdJU4M

Start Routines Early

Instead of waiting for the first day of school to change all your routines, guide your family into the time warp a little more gradually. Shift sleep and wake times a week or two ahead of time so the early wakeups won’t come as such a shock to the system. Adapt meal schedules and other daily habits the same way. Before you know it, the spell will be complete and you’ll be ready to roll with the regular school-day schedules.

Create a Special Back-to-School Tradition

Watching your kids’ eyes light up is its own mini dose of magic that never gets old. Start a fun new tradition to brighten their first day or week. That could be a special breakfast, new outfit, porch photoshoot, surprise gift for them to discover in their backpacks or another creative idea personalized to your family.

Get a Convenient and Affordable Haircut

A haircut can help children and parents get into the back-to-school spirit. That’s why Great Clips partnered with internet celebrity and magician Justin Flom, known for his mind-bending optical illusions, to help remind parents they don’t need complicated tricks to make getting a back-to-school haircut a breeze. With the Great Clips app, parents can easily check in multiple family members at once, keep an eye on wait times and get notified when it’s their turn for a haircut. No illusions, no sleight of hand – just convenient, affordable haircuts that feel like much needed relief for parents.

“Our goal is to help families spend less time waiting and more time doing what matters during one of the busiest seasons of the year,” said Traci Elder, vice president of marketing and communications at Great Clips, Inc. “The Great Clips app helps families save time by making haircuts fit more seamlessly into their busy schedules and at a great price, too.”

Plan Outfits Ahead of Time

The morning rush often feels like the furthest thing from a fairytale. Take at least one groggy decision off your plate by choosing clothes the evening before – or even assembling a week’s worth of outfits on Sunday and storing them in a special drawer that gives your child an instant portal to getting dressed.

Personalize School Supplies

From preferred colors to beloved characters, all kids have their favorites. Stock them up with pens, notebooks, lunchboxes and other supplies that match their current obsessions; that way, it’s more exciting to use them at school and show their swag off to their friends.

Refresh the Study Space

Homework time might look like less of a wizard battle if your kids have a special place to do it. Add some whimsy to their study spaces by putting up string lights, letting them pick out a new piece of furniture or art, and making their environment cozy and comfortable.

Set School Year Goals

As a family, take some time to figure out what each of you wants to achieve this year – and make it fun. Amp up the magic here by writing down your goals; then, keep track of progress by filling up a goal jar with shiny stars, swirly marbles or fun charms. Throughout the school year, set up different “quests” for your family to accomplish.

Discover more about back-to-school haircut magic that saves you time and money at GreatClips.com/BacktoSchool.

Photo courtesy of Shutterstock (mom and daughter)

    

SOURCE:

Great Clips

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