When facing hard times it’s always best to channel your inner joy and face your challenges with a smile. Ethan LyBrand, a 10-year-old with Duchenne Muscular Dystrophy has a secret to making other people smile, and he’s sharing it with the world via social media. For the past week, Ethan has been delivering a virtual “Joke-a-Day” every day through the Muscular Dystrophy Association’s social media channels.

Filmed by his family at their Decatur, Alabama home, the budding comedian’s favorite jokes provide a daily dose of happiness for those who need it. Ethan’s parents, Jordan and Josh, share that their son is always a source of positivity, so making people smile just comes naturally to him. 

According to the LyBrand family, “Ethan’s Joke a Day for MDA is his way of spreading virtual joy across our communities. It’s also his way of raising awareness and advocacy for people with neuromuscular diseases at this pivotal time. The neuromuscular disease community – people with ALS, muscular dystrophy, SMA, Duchenne and related rare diseases – are among the highest risk populations for COVID-19 and they need our help and support more than ever.”

Ethan was diagnosed with Duchenne Muscular Dystrophy two days before his second birthday. Duchenne Muscular Dystrophy is a genetic disorder characterized by progressive weakness and degeneration of the skeletal muscles that control movement.  Ethan is ambulatory but tires easily and periodically needs his powerchair, which he affectionately calls “Bumblebee” after his favorite Transformer.

Ethan LyBrand

Since his diagnosis, Ethan and his family have created a movement to advocate for other kids living with neuromuscular disease. His efforts were recognized by Muscular Dystrophy Association (MDA), who named Ethan its 2020-2021 MDA National Ambassador. As MDA’s National Ambassador, Ethan represents the 250,000 people nationwide who are living with neuromuscular disease.

Ethan LyBrand and family

An important way to support research for treatments and ultimately cures for the neuromuscular disease community is by going to MDA.org to make a donation at any level you’re able to. Your support helps ensure MDA’s 150 Care Centers are equipped to provide critical medical care to kids and adults who are particularly vulnerable during the pandemic. It also supports ongoing care for families like the LyBrands, through telemedicine and enriching activities like virtual game nights.

Ethan LyBrand

Check out MDA’s Twitter and Instagram every afternoon for a new daily joke!

 

—Jennifer Swartvagher

All photos courtesy of the Muscular Dystrophy Association

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Dolly Parton has come up with a way to help comfort children during the coronavirus pandemic. On Monday, the country music star shared her plans for “Goodnight with Dolly,” a weekly video series featuring her reading different children’s stories on behalf of her Imagination Library, a literacy advocacy group. The first installment will air Thursday on the Imagination Library’s YouTube page.

Parton, calling herself “The Book Lady” announced the series with a short video on her Facebook page as well as a blog post on the Imagination Library’s website. “Goodnight with Dolly” will run for 10 weeks with the aim of offering children “a welcomed distraction during a time of unrest.”

“This is something I have been wanting to do for quite a while, but the timing never felt quite right,” Parton said in the blog post. “I think it is pretty clear that now is the time to share a story and to share some love. It is an honor for me to share the incredible talent of these authors and illustrators. They make us smile, they make us laugh and they make us think.”

—Jennifer Swartvagher

Featured photo: Dolly Parton’s Imagination Library via YouTube

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Some kids are all about pie. Lila Chen prefers Pi!  The sixteen-year-old is channeling her love of math to raise money for The March of Dimes. 

The Chen Family

Chen from Noe Valley is this year’s March of Dimes San Francisco March for Babies Ambassador. Lila, a junior at Lowell High School, started raising critical funds for March for Babies in the 9th Grade. Two year ago, the Chen family held a “Pi for Babies” event at their home for family and friends, where Lila recited 1,256 digits of Pi from memory.  They also ate a lot of pie. Last year, Chen held another fundraiser, this time challenging herself to beat her previous year’s number. She raised nearly $5,500 for the 2019 March for Babies campaign when she recited 1,364 digits of pi for her supporters.This feat unofficially ranks Lila as 43rd in the US or 120th in the world, according to the Pi World Ranking website!

Lila Chen

Chen has enjoyed memorizing Pi to challenge herself for years. “For whatever strange reason in Grade 5, I decided that I could and would win the Grade 6 Pi memorization contest at my middle school,” Chen said. “That year, the winner had memorized 150 digits. That’s a lot of numbers! The next year, when I was in 6th grade, I won the contest by memorizing 396 digits! In 7th grade, mainly because my friends dared me that I couldn’t double my number, I won with 800 digits. And in my 8th grade, I memorized over 1000 digits. I was proud of my accomplishments, but didn’t know what good having a freakish memory for these particular numbers would do. That is, until my family and I realized that I could use this random skill of mine to shine light on a cause that means a lot to me.”

The Chen Family

The March of Dimes holds a special place in Chen’s heart. She raises money to honor her little brother Jonah, who passed away from a neonatal viral infection, enterovirus, only nine days after he was born.“While nothing could have prevented our family’s tragedy, we know how important it is to focus on healthy babies and mothers,” explained Chen. She continues her fundraising efforts to support the March of Dimes’ “lifesaving research, programs and advocacy so that all moms and babies can be healthy.” 

Lila Chen

“Lila and her family share our commitment to improve the health of all moms and babies,” says Robert Pinnix, Greater Bay Area Executive Market Director. “It’s not acceptable that each year thousands of moms and babies deal with complications from pregnancy and birth. But together we can do something about it. That’s why we March for Babies — a day for everyone to hope, remember and celebrate together at our walks nationwide.”

You can read more about the Chen family and learn how you can become involved on the San Francisco March for Babies event page.

—Jennifer Swartvagher

All photos courtesy of The Chen Family

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It’s common for parents to feel anxious as the time nears for their children to begin kindergarten. A frequent question posed to educators is, “What should my child be able to do before he/she goes to school?”

It’s important to keep in mind that children are not expected to enter school with all the knowledge and skills they will learn in kindergarten, already in place. Kindergarten is a time filled with rich learning opportunities. There are some skills though, that support children’s transition to kindergarten and help get them off to a smooth start.

Many of the skills that will support your child’s transition to school are easily embedded into your day-to-day activities. Self-care skills, such as using the washroom independently, will help your child to be successful at school. Make sure handwashing is a part of this routine, too. Dressing and undressing for the outdoors are also skills that can be practised at home. This includes being independent with shoes (Velcro is a great option if your child can’t tie laces.) and doing up zippers on coats. For colder weather, it will be very helpful if your child can manage things like snow pants, boots, and mittens on her own. Although teachers will help with these tasks, there are far more students than teachers, so getting ready independently will help speed up the process. 

You can begin practising some skills at home that will help your child become comfortable with eating lunch at school. It is beneficial to explore lunch bags and containers that will work best for your child. It will be very helpful if your child is able to open containers on his own. You will also want to talk to your child about what types of foods he would like packed in his lunch. It might be fun and helpful to do a few “trial runs” where you pack your child’s lunch and have him eat it at home. You can also check with the school to see how many eating opportunities there are during the day, so you know how much food to pack. Don’t forget a water bottle, too!

In addition to self-care skills, there are social skills that can be embedded into your child’s day that will help her when she begins school. You may want to consider providing your child with opportunities to interact with other children, to get her used to being around groups of students in kindergarten. If your child has attended daycare, this may be something she is already comfortable with. Otherwise, consider opportunities for social interactions like playdates, day camps, or team sports. These experiences can help make the transition into a busy kindergarten classroom less overwhelming.

One of the social skills to focus on with your child is turn-taking. You can facilitate this when your child is with other children or even when the two of you are playing together. Along with turn-taking comes the important concept of sharing. These skills will be important in the kindergarten classroom and beyond. You can support turn-taking at home by playing board games together and can encourage sharing by asking to join in when your child is playing independently with his toys.

Another important social skill to begin teaching your child is compromising. With many students playing together in kindergarten, there are bound to be lots of ideas about what to do and how to do it! Navigating situations together where your child’s opinion is not the only one will help support their social interactions. It’s important for your child to have a voice but also important for her to know that others’ feelings and ideas are important, too. You can introduce compromising at home by choosing the game or activity yourself sometimes. Pair it with turn-taking, having your child choose the game or activity the next time.

It will also be beneficial for your child to know what to do when conflicts with other children occur. Support your child with expressing how he feels by helping him find the right vocabulary. Help him label feelings like “sad,” “angry,” and “frustrated.” Teach him that physical reactions, such as hitting or biting, are not okay. 

As you teach your child skills that promote her independence, don’t forget about self-advocacy. In kindergarten and beyond, it is important for children to recognize when they need help. In kindergarten, this may mean asking for help when they’re having a problem with a classmate that they can’t solve. In later grades, it may mean asking for a concept to be reviewed or presented in a different way so we can understand it more clearly.   

Supporting your child with self-care, social, and self-advocacy skills will help her to be successful in kindergarten. The other set of skills parents often wonder about is academic skills. While many of these skills will be taught at school, there are some that you can begin working on together at home. Early literacy and math skills are easily incorporated into your day-to-day activities at home and will support your child’s transition to school. Fine motor skills, which help with tasks such as writing and cutting, are also beneficial to work on at home. 

Alesia is a founder of PrimaryLearning.org, an educational website that helps elementary school teachers and homeschool parents with hands-on worksheets, activities and thoughtful articles.

Congrats to Ricky Martin and his husband Jwan Yosef! The celeb recently announced the pair is expecting a fourth child.

During the recent Human Rights Campaign National Dinner in Washington, D.C., Martin announced the soon-to-be new addition to his family. The singer and actor already has twin sons, 11-year-old Matteo and Valentino, and a nine-month-old daughter, Lucia.

https://www.instagram.com/p/B3Afz2bnEkr/

Martin accepted an award for his LGBTQ rights advocacy and philanthropy efforts at the dinner, telling guests, “My husband Jwan, I love you, my beautiful twins, Valentino and Matteo, they’re also here, I love you with all my heart, you’re my strength, you inspire me every day, you motivate me to keep doing what I’m doing and you guys are amazing kids.” He also added, “You guys are amazing. I love you.”

The superstar singer/actor continued, adding his big reveal, “And by the way, I have to announce that we are pregnant. We are waiting.”

—Erica Loop

Featured photo: Ricky Martin via Instagram 

 

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One little girl had a case of the sorry’s following a trip to the Great Smoky Mountains National Park. The girl, Karina, snagged a rock to take home during her vaycay, but after an attack of conscience, she sent it back to the park—with a letter that’s pure awesomeness!

The park’s staff was so impressed with the little girl’s remorseful letter they posted it on their Facebook page, and they’re not the only ones who’ve recognized the sweet sentiment behind it.

In her letter Karina writes, “Dear Park Ranger, Deep Creek was awesome! I especialy [sic] liked Tom Branch Falls. I loved it so much, I wanted to have a soiveneir[sic]to come home with me. So I took a rock. I’m sorry, and I want to return it. Also, here’s a donation!”

Along with plenty of accolades for her enviro-advocacy, one Facebook commenter added, “What a great lesson she has learned. She would be a wonderful spokeslady for the National Parks.” We totally agree!

—Erica Loop

Featured photo: Great Smoky Mountains National Park via Instagram 

 

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Pittsburgh International Airport recently unveiled a very special space—a sensory room for children and adults with autism and other neurodevelopmental needs!

The room, named Presley’s Place, is the brainchild of airport employee Jason Rudge. Rudge, who works as a heavy equipment operator, got the idea from his son Presley. The four-year-old is on the autism spectrum and, according to his parents, struggles with changes in his routine which certainly doesn’t make flying easy.

The new space includes a realistic cabin experience (courtesy of American Airlines and Magee Plastics), private soundproof spaces, adjustable lighting, a transitional space between the concourse and room, a sensory-friendly restroom, adult changing stations, adjustable sinks, calming activities and comfortable seating.

The Pittsburgh International Airport’s website describes Presley’s Place as, “A calming respite for travelers with sensory processing issues and their families to de-escalate prior to getting on a plane or even after landing.” The web description also adds, “To best understand the needs of the community, we brought together advocacy groups, individuals and caregivers of children with neurodevelopmental challenges to share their experiences and offer suggestions for the room’s design.”

Presley’s Place isn’t the only way Pittsburgh International Airport makes traveling easier. The airport also has a Military Lounge for members of the military and their families and a nursing lounge!

—Erica Loop

Featured photo: Pittsburgh International Airport via YouTube

 

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Balancing your career with motherhood isn’t always easy, even when you’re a celeb. Dora the Explorer star Eva Longoria revealed how much life has changed becoming a mom one year ago.

In a cover story for Parents magazine, Longoria opened up about life as a working mom to son Santiago who just turned one. As an actress and producer, Longoria had to get back to work just weeks after her baby was born.

https://www.instagram.com/p/BzOC0g8HW8L/

“Going back to work was hard. Breastfeeding while working was hard, just for the timing of the pumping and the feedings and the sleeping and the not sleeping,” she said in the interview—but, “You just do it and get it done.”

Longoria says she and her husband José “Pepe” Bastón have been lucky that their son has made parenting “easy” so far thanks to how easy-going he’s been. “He’s healthy, he’s funny, he’s sweet, he sleeps, he eats.”

https://www.instagram.com/p/By50toenod-/

The actress who has been a vocal advocate for the TimesUp movement also shared how becoming a mom has influenced her advocacy work. “The stakes are higher now that I have a child,” she adds elsewhere in the interview. “I need to make sure I’m doing my part to leave the world a better place—for him and for all the children of our future.”

—Shahrzad Warkentin

Featured photo: Eva Longoria via Instagram

 

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Flying with kids isn’t easy. Add on a food allergy and you have a whole other set of problems. And that’s exactly why one mom filed a game-changing complaint with the federal Department of Transportation.

In 2016 a gate agent for American Airlines refused Nicole Mackenzie’s pre-boarding request. According to the New York Times, the mom of a seven-year-old with life-threatening nut and seed allergies, wanted time to properly clean her child’s seating area. When Mackenzie wasn’t allowed to pre-board, she filed a formal complaint with the D.O.T.

photo: Anugrah Lohiya via Pexels 

Nearly three years later the D.O.T. regulators found that American Airlines had violated the Air Carrier Access Act. But luckily for anyone with a life-threatening food allergy, the airline has already made some pretty significant changes!

Following a D.O.T. complaint by food allergy advocacy group FARE in 2017, American Airlines changed its previous pre-boarding policy. As of Dec. 12, 2018 American Airlines began allowing passengers with peanut and tree nut allergies (or the adults traveling with them) to pre-board. Like Mackenzie wanted to do, parents are now free to wipe down seats and tray tables prior to the child getting on the plane. FARE’s CEO, Lisa Gable, told Allergic Living, “Anytime a company takes steps to address the needs of people with food allergies, we are pleased.”

If you’re wondering why pre-boarding policies are so important, consider what life is like for a child with serious food allergies. Leftover peanut, tree nut or other allergen residue can put the child into anaphylaxis. This potentially fatal condition is scary enough as is. But tens of thousands of feet into the air—the reaction may become unmanageable.

Thanks to American Airlines’ pre-boarding policy (other airlines such as Delta and JetBlue also have similar policies), parents can take some comfort in getting the chance to reduce potential contamination before the child ever reaches their seat.

—Erica Loop

 

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After facing infertility and going on to raise five kids, one mom decided to give the greatest gift she could to another mom when she donated her uterus.

After struggling to become pregnant for several years, Aprill Lane and her husband were diagnosed with infertility. They eventually adopted a son and had twins through in vitro fertilization—and were blessed again when they amazingly became pregnant naturally not once, but twice.

Now with five kids under seven, Lane decided that she wanted to give another struggling mom that same miraculous chance that she was given. “It’s heavy,” Lane said. “It’s a huge burden as a female feeling like you are failing the one part of you that you’re meant to do,” she told WFAA News, about grappling with infertility.

Last year Lane donated her uterus to an anonymous woman as part of a clinical trial at Baylor University Medical Center. The trials have already resulted in two successful births over the last two years.

Lane has also helped those struggling with infertility in other ways. In 2010, she founded AGC, a non-profit organization dedicated to providing both advocacy and scholarships for those struggling with infertility in the United States. The AGC Scholarship provides financial assistance to people who don’t otherwise have the resources to become parents while struggling with infertility.

—Shahrzad Warkentin

All photos: Courtesy of Aprill Lane

 

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