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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) As part of the season of change with leaves crunching underfoot and a crispness in the air, remember to pause to celebrate a food known for its change, crunching and crispness – popcorn.
In honor of National Popcorn Poppin’ Month, a time when farmers head to the fields to harvest crops, gather with loved ones to celebrate this humble yet extraordinary snack. Whether it’s prepped on the stove, in the microwave or purchased ready-to-eat, Americans consume around 14 billion quarts each year of the wholesome whole grain, according to the Popcorn Board.
With each kernel, popcorn’s tantalizing aroma fills the air, setting off a journey of sensory bliss, as the sound of popping echoes in ears and the taste of buttery goodness dances on tongues. Whether enjoyed at the movies, during a cozy night in or at festive gatherings, popcorn brings people together, creating moments of shared joy and laughter. Catering to every palate, popcorn’s versatility knows few boundaries, as it can be dressed up with caramel, chocolate or even savory seasonings.
Join the celebration this fall with a fitting recipe like Old Fashioned Bourbon Maple Popcorn with Pecans. Accented with warming flavors of bourbon, orange and bitters, this maple-glazed treat offers a fun, cocktail-inspired snack perfect for sharing.
Discover more snacks that celebrate fall flavors at Popcorn.org.
Old Fashioned Bourbon Maple Popcorn with Pecans
Servings: 4-6
- 8 cups popped popcorn
- 1/2 cup chopped toasted pecans
- 1/3 cup maple syrup
- 1 tablespoon bourbon
- 2 tablespoons butter
- 1 tablespoon orange zest
- 1 dash bitters
- Place popcorn and pecans in large bowl.
- In small saucepan over medium-high heat, combine maple syrup, bourbon and butter; bring to boil. Cook, swirling pan, 3-5 minutes, or until mixture thickens to corn syrup consistency. Stir in orange zest and bitters.
- Drizzle maple syrup mixture over popcorn; toss to evenly coat. Cool completely and serve.
Tips: Substitute bourbon with rye or whiskey. For “mocktail” popcorn, substitute with non-alcoholic bourbon or whiskey.
SOURCE:
Popcorn Board
(Family Features) One of the best parts of the holidays is being together with those you love, and for many families that time together involves the exchanging of gifts among loved ones young and old. Finding the right gift for everyone can be a challenge, especially if teenagers and young adults are on your shopping list.
It seems like social media feeds are constantly filled with a new tech item, style, pastime or trend, making it more challenging to pick out gifts for the young ones on gift lists. This year, consider some on-trend gift ideas – like Jelly Belly Jelly Beans – to show appreciation for the Gen-Zers in your life with presents and stocking stuffers that can win them over.
New in Tech
As one of the most popular categories of gifts for teens and one that’s always evolving, deciding which devices and gadgets to gift can be hard. Consider your loved ones’ hobbies and interests to make the job easier; for example, if they’re music lovers or podcast fanatics, wireless earbuds or headphones are a perfect option. If social butterflies are on your shopping list, portable phone chargers and smartphone accessories like a pop-out phone grip can make sure they’re one step ahead of their next photo or social post.
For Boba and Candy Lovers
Many Gen-Zers love a good cup of bubble tea or boba swag, so feed their cravings with an option like Jelly Belly Boba Milk Tea jelly beans. With gift boxes, snack bags and more, these delicious treats made for candy lovers provide a perfect balance of tea, tapioca and sweetness in five true-to-life milk tea flavors: Mango, Taro, Matcha, Strawberry and Thai Milk Tea jelly beans. Find these treats at JellyBelly.com where you can purchase online or locate a store near you.
Cozy Comforts
For teens heading to college or young adults venturing out on their own, consider gifting items to spruce up their new spaces. You can give them a helping hand to start their next chapter with fun decor items like throw pillows and blankets or add life to their new homes with stylish wall art or flower subscriptions. For simple reminders of home, consider candles with their favorite scents or aromatherapy diffusers and essential oils to add a touch of calm to the chaos of heading out on their own.
Play to Their Hobbies
Help them embrace their talents and favorite activities whether it’s art, reading, cooking, gaming, playing sports or mastering instruments. New paint kits and supplies can help young Picasso’s take their art to the next level while a new appliance or cookbook can provide an upgrade for avid home chefs.
The Gift of Music
Whether they have a favorite band or are up-and-coming musicians themselves (or both), give the gift of music with fun ways to enjoy their favorite songs. Record players and vinyl records are making a major comeback while portable speakers allow music lovers to take their favorite sounds wherever they go. A subscription to a streaming service can be perfect for casual listeners or, if you’re looking to splurge, consider concert tickets.
Outdoor Adventures
From jogging around the neighborhood to exploring nearby parks and trails, outdoor enthusiasts can never have enough gear. Runners are always searching for the latest sneaker launch or fitness tracker to keep on pace with their goals while more casual enjoyers of the outdoors may love a new water bottle, picnic blanket or beach bag.
Photo courtesy of Getty Images (girl opening gift)
SOURCE:
Jelly Belly
(Family Features) Pets provide unconditional love to their companions; in return, it’s important to make sure they live happy and healthy lives by providing the best care possible. This means making sure that in addition to food, treats and toys, they receive daily care for their eyes, ears and overall health.
With a desire to bring a dog into his family’s lives, Albert, a Bausch + Lomb employee, rescued a terrier mix named Watson. However, it soon became apparent Watson needed some extra love and care to help protect his eyes and ears from irritation and excess buildup. When finding a remedy proved difficult, Albert worked with veterinarians to develop Project Watson Health Care for Dogs, a comprehensive line of quality products targeting these specific areas.
To help ensure your furry member of the family has the best head to tail health possible, consider these tips.
Schedule Regular Vet Visits
Routine wellness checks are an essential part of your pet’s care. Annual screenings, even if your dog seems healthy, allow your veterinarian to provide vaccines to combat disease and uncover any health issues that may have otherwise gone undiagnosed until symptoms advanced.
Watch Your Pet’s Diet
Feeding your pet a proper diet based on his or her breed, age, size and lifestyle plays a big role in overall health. A balanced diet that includes high-quality food can lead to a shiny coat, healthy skin, bright eyes and may also help strengthen your pet’s immune system, maintain intestinal health, increase mental acuity, regulate weight, keep muscles and joints healthy and more.
Support Clean Ears and Eyes
Often overlooked, the eyes and ears are vital areas to the overall health and wellness of your pet. To help keep these areas free of any buildup of bacteria that may cause irritation, consider an option like the line of Project Watson Health Care Products for Dogs, which includes an eye wash, eyelid wipe, ear wash, ear wipe and supplements made using high-quality and naturally inspired ingredients.
Excessive blinking or pawing at the eyes can be signs of buildup, irritation or infection. Dirt and debris trapped around the eyes can also clump in fur, leading to skin irritation and infections while excessive tear production can lead to fur staining, which can develop an unpleasant odor. Eye wipes can be used daily to relieve staining and remove excess buildup. Washing your dog’s ears may help reduce dirt, debris and wax buildup; help prevent itching; and reduce the chance of infection while keeping ears smelling fresh.
Create an Exercise Routine
Walks, games in the backyard and social time with other pets can help keep your furry friend in good physical condition. While different breeds and species often have different needs, adequate activity can provide benefits beyond the physical, including reducing boredom, which can potentially lead to anxiety or destructive behaviors.
Prevent Pests
In addition to regular vaccinations, ensure your pet is up to date on parasite prevention. This includes fleas, ticks, mites, heartworm and more which can cause reactions ranging from mild to severe (or even fatal in some cases of heartworm or Lyme disease). Look for pests and skin abnormalities when grooming your pet and contact your vet if your pet excessively scratches, chews or licks his or her fur or ears, or persistently shakes his or her head.
For more solutions to keep your four-legged friend happy and healthy, speak with your veterinarian or visit tryprojectwatson.com.
SOURCE:
Bausch + Lomb
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