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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
(Feature Impact)With ongoing uncertainty surrounding global oil prices, more U.S. consumers are buying and showing more interest in electric vehicles (EVs). The shift comes as car shoppers weigh fuel costs, improving affordability and a growing number of family-friendly electric SUVs.
Watch this video to learn more
According to Spectrum News, EV sales increased in the first quarter of this year. In the same time frame, interest in new EVs increased 16% and interest in used EVs increased by 30%. As families look for opportunities to ditch the gas pump without sacrificing power or space, new all-electric options create a compelling argument for families to turn to EVs.
For those looking to offset their weekly fuel up, the 2026 Kia EV9 can save drivers around $1,800-3,400 per year compared to gas-powered SUVs. Cars.com named the 2026 Kia EV9 the Best Electric Vehicle of 2026 for the second consecutive year.
“The Kia EV9 stood out because it delivers everything we want from a modern electric SUV – strong real-world range, fast charging, excellent space and comfort, and smart flexibility across the lineup,” said Mike Hanley, Sr. Road Test Editor, Cars.com.
For those who aren’t ready to switch to a fully electric vehicle, Kia has expanded its hybrid options. The 2026 Kia Sportage Hybrid adds horsepower and updated design features, while the Kia Telluride model offers a hybrid version for the first time with a total driving range of up to 637 miles on the Ex FWD-trim.
To learn more about the Kia EV9 and Kia’s hybrid models, visit Kia at kia.com.
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(Feature Impact) Youth sports can change lives – building confidence, resilience and lifelong friendships among the kids and teens who play. In fact, winning games is often the least important part of the experience.
As an official sponsor of the FIFA Women’s World Cup 2027™, Dove is proving you don’t need a championship trophy to be a winner with the announcement of Back Her Game, a nationwide search to find a girls’ sports team where coaches and players keep joy and confidence at the center of the game. Through Oct. 4, eligible adult coaches of girls’ teams with players ages 13-18 can enter by posting an Instagram or TikTok video showcasing how their team brings confidence and joy to the field, tagging @dove and using #KeepHerConfident and #Contest in the caption. The winning team will receive an all expenses paid trip to the FIFA Women’s World Cup 2027™ in Brazil.
Creating an envirnonment where young athletes feel seen and appreciated is its own reward. Consider these tips from Dove and longtime partner Kylie Kelce highlighting three ways coaches can help their players feel like they belong.
https://youtube.com/watch?v=V6sLrOK1wyc%3Fsi%3DNrxxQox2XgGp0-hH
Notice and Celebrate Small Moments of Progress
Success isn’t just defined by victories on the field, so those wins aren’t the only kinds that deserve to be celebrated. Pay attention to the personal growth and progress each athlete is showing, recognize them with specific praise and consider starting small traditions to celebrate when players meet goals or exceed expectations.
Make Room for Body Confidence
According to research from Dove, 1 in 2 girls who quit sports have been criticized for their body type. For young athletes to feel secure, supported and comfortable on their teams, they need coaches dedicated to building spaces that encourage body confidence.
That’s why Dove launched Body Confident Sport, a free, evidence-based program from the Dove Self-Esteem Project designed to give coaches the tools to build body confidence among girls ages 11-17 and help create more supportive sports environments.
“Sports can give girls so much – friendship, confidence, teamwork and memories that stay with them for life – but that only happens when they feel supported enough to keep playing,” said Kelce, mom of four and coach. “As a coach, I love that this campaign shines a light on girls’ sports teams that show up for each other to remind girls everywhere that they belong on the field exactly as they are.”
Recognize the Teammates Who Lift Others Up
Although coaches play a vital role in shaping team culture, they can’t do it alone. Encourage help by recognizing the helpers. If you notice a girl who goes out of her way to help shy players feel included, one who is first in line to comfort an upset teammate or anyone whose presence adds light and positivity to the group, it can be as simple as pulling her aside to let her know you see and appreciate her efforts.
To learn more and help girls keep playing with confidence, visit Dove.com/bodyconfidentsport.
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Dove
(Feature Impact) Communities are strengthened every day by local organizations working to address challenges close to home, whether that’s helping families access food, supporting students, expanding opportunity or providing essential resources to those who need them most. Often operating with limited resources, these organizations are finding practical solutions that make a meaningful difference in neighborhoods and communities across the country.
Many of these efforts happen quietly, powered by people who volunteer their time, share their expertise, donate resources or simply help spread awareness of causes they care about.
For individuals looking to make a difference where they live, community involvement doesn’t have to start with a large commitment. Consider these five options to get involved.
Give Your Time
Giving your time is one of the most direct ways to support organizations serving your community. Whether it’s packing meals, mentoring young people or participating in neighborhood cleanups, volunteering allows people to contribute directly while gaining a deeper understanding of local needs.
Share Your Skills
Nonprofits often need specialized skills in addition to hands-on volunteer support. Communications support, technology expertise, event planning, photography, financial guidance and other professional skills can help organizations expand their reach and strengthen their operations. Contributing the skills you’ve developed can often be just as valuable as donating time or resources.
Tap Into Your Workplace
Many employers offer opportunities to support causes that matter to their employees, such as volunteer programs, community grants or other charitable opportunities.
In communities across the country, local nonprofits can receive support through programs like the PepsiCo Foundation’s Community Impact Awards, where employees can nominate nonprofit organizations in their local communities for grant funding. Since 2022, the program has invested more than $3.7 million into organizations working on issues ranging from food access to education and community development.
“Across North America, there are organizations showing up every day for their communities, often without recognition and with limited resources,” said Monica Bauer, SVP of social impact, PepsiCo and president of the PepsiCo Foundation. “The Community Impact Awards help shine a light on organizations that are creating opportunities, solving local challenges and making a real difference in people’s lives. What makes this program special is that the recognition comes from PepsiCo associates who know these organizations firsthand and have seen their impact up close.”
This year, 100 organizations across the U.S. and Canada received $500,000 total in grants and teamed up with their respective nominating employees for volunteer activities supporting their missions, giving employees another opportunity to engage directly.
Give What You Can
Financial contributions are a valuable way to give back, but they aren’t the only option. Many organizations need non-monetary donations such as school supplies, canned goods, clothing, toys and technology. Before collecting items, check with organizations to learn what is most needed and how contributions can make the greatest impact.
Use Your Voice
One person can make a difference. When that person gets a friend or family member involved, more people can discover and support organizations doing important work. Sharing a nonprofit’s mission on social media, inviting others to volunteer or connecting people with causes you care about can help organizations reach new supporters and expand their impact.
Making a difference doesn’t require doing everything at once. Whether you contribute your time, skills, resources or advocacy, small actions can help make a big impact over time.
Across the U.S., nonprofit organizations are helping improve lives, create opportunities and respond to community needs every day. Their work is a reminder that meaningful change often starts locally with people willing to get involved.
Learn more about how individuals and organizations can help address some of the most pressing needs in their communities by visiting PepsiCo.com/about/social-impact.
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