Actor Chris Pratt and his wife, Katherine Schwarzenegger Pratt, are among the latest celebrities to become Special Olympics Global Ambassadors. In this mission-based role, they’ll help advance the global movement for the inclusion of people with intellectual disabilities.
“Special Olympics has always been a huge part of my life,” declares Schwarzenegger Pratt, who is the granddaughter of Eunice Kennedy Shriver, the founder of Special Olympics. “My grandmother dedicated her entire existence to being an advocate for those with special needs, and my childhood consisted of going to Special Olympics events and my cousins and I being camp counselors at Camp Shriver.”
In the 1960s, Kennedy Shriver established Camp Shriver at her Maryland farm to offer inclusive activities for children with special needs during summertime.
Schwarzenegger Pratt is the daughter of actor/politician Arnold Schwarzenegger and journalist/author Maria Shriver. Similar to the storytelling skills of her mother, Schwarzenegger Pratt has penned several non-fiction books. She’s also been open about her struggles with mental health stability.
Eunice Kennedy Shriver visits the Eunice Kennedy Shriver training center and takes in a game of basketball.
“Chris and I are so thrilled to be a part of the Special Olympics family as a couple and to continue to spread the mission of Special Olympics and advocate whenever and wherever we can about inclusion, dignity and acceptance. This is a movement that speaks to our hearts as parents and individually,” Schwarzenegger Pratt explains.
The pair welcomed their first daughter together in 2020 and, just this May 2022, added another little girl to their family. Pratt also shares a 9-year-old son, Jack, with his ex-wife, actress Anna Faris. Jack was born about 2 ½ months prematurely weighing only 3 pounds 12 ounces. He suffered cerebral hemorrhaging and stopped breathing several times. At that time following his premature birth, pediatric neurosurgeons warned Pratt and Faris that their son may be developmentally disabled. To their surprise, his prognosis improved and, aside from some muscle issues in his legs and vision problems, they report that Jack leads a fairly typical, healthy life.
“I’ve had a lot of roles in my life—actor, producer, father—and I’m humbled by the chance to serve as an ambassador for Special Olympics,” Pratt says. “I’m continually amazed by the bravery and spirit of these wonderful athletes. I stand by Special Olympics on their quest to make the world a better, healthier and more joyful place—one athlete, one volunteer, one family member at a time.”
In addition to being motivated by the medical hurdles Jack faced, Pratt says the opportunity to advance inclusive sports, the heart of Special Olympics, was a distinct draw to becoming an ambassador.
Pratt started his acting career on the small screen with a role on NBC’s comedic sitcom Parks and Recreation. He went on to become a box office star thanks to leading roles in Jurassic World, Marvel’s Guardians of the Galaxy and Avengers: Infinity War, all of which required Pratt to stay physically fit and active. He also understands that playing sports builds valuable skills relevant off the playing field, like discipline and teamwork.
source: Special Olympics
Thanks to Pratt’s encouragement, Marvel Studios is exploring production assistant roles to be filled by Special Olympics athletes! Special Olympics is providing the Unified Leadership training program for Marvel Studios, which shows leaders without disabilities how to improve their behaviors and practices, challenge the status quo and make their organizations more inclusive.
Special Olympics strives to end discrimination against people with intellectual disabilities. The organization promotes the acceptance of all people through sports and various programming. In North America alone, over half a million athletes participate in the 32 sports offered by Special Olympics.
For a two-year term running through late 2023, Special Olympics will charge Pratt and Schwarzenegger Pratt with focusing largely on Special Olympics Unified Sports® and Special Olympics Unified Champion Schools® programming, which fosters climates of acceptance and inclusion of students with intellectual disabilities in schools around the world.
The Special Olympics USA Games will be held in Orlando, Florida, June 5-12, 2022. The event is slated to be attended by 4,000 athletes, 10,000 volunteers and 125,000 fans.
Zappos, the experiential e-commerce and customer service company, launched its exclusive adaptive footwear and other products for the 2022 Special Olympics USA Games. This includes designs from top brands like Reebok, UGG®, Crocs, BILLY Footwear, Brooks, Asics and SOREL.
The products are now available for purchase (for all) on Zappos.com. Plus, athletes and spectators can also make purchases in-person at theUSA Games this June 2022.
Zappos is supporting the organization’s Healthy Athletes initiative, consisting of on-site activations at the USA Games to provide free health examinations to all participating athletes in a fun, stigma-free environment. To celebrate the completion of five out of seven Healthy Athletes screenings, participants will get to select a free pair of adaptive footwear of their choice from Zappos’ 2022 Special Olympics USA Games designs!
source: Zappos
Products available include:
Reebok Nanoflex Parafit TR SO
UGG® Sport Yeah Special Olympics USA Games
Crocs Classic Clog with Special Olympics USA Games Jibbitz™
Crocs Jibbitz™ Special Olympics USA Games 5pk
BILLY Street Special O
Brooks Ghost 14 with Special Olympics USA Games socks
Asics Gel-Excite 9 with Special Olympics USA Games laces
SOREL Explorer Blitz™ Stride Strap
“We are honored to partner with the 2022 Special Olympics USA Games as well as collaborate with our brands on products and designs to better fit each athlete’s needs,” said Dana Zumbo, Business Development Manager at Zappos Adaptive. “Our mission at Zappos Adaptive is to provide functional and fashionable products to make life easier for all, and we can’t wait to bring this to life in an in-person activation at the USA Games.”
As part of its platinum sponsorship of the Special Olympics, Zappos has created a one-of-a-kind experiential retail space within the USA Games’ Fan Zone to highlight and display the unique products. In addition to purchasing the products on-site in Orlando, visitors will be able to experience Zappos’ daily activations bringing fun and engaging activities inclusively designed for people of all abilities. The activations will range from the original Big Piano™, to a Bubble Zone, and an interactive Digital Wall.
source: Zappos
The 2022 Special Olympics USA Games is expected to bring together over 5,500 athletes and coaches from 63 U.S. and Caribbean delegations, and more than 125,000 spectators across seven days of games. The Special Olympics USA Games will be held in Orlando, Florida from June 5-12, 2022.
For more information about adaptive footwear designs and to purchase the 2022 Special Olympic USA Games products, please visit https://www.zappos.com/e/special-olympics.
Military veterans who suffer traumatic brain injury could experience an increased long-term risk of stroke.
The alarming possibility comes from a new study presented at the American Heart Association’s 2022 Epidemiology and Prevention, Lifestyle and Cardiometabolic Health conference. Prior studies have previously shown short-term associations between brain injury and stroke, according to Dr. Andrea Schneider, lead researcher of the latest study.
This particular study used data gathered from more than 610,000 veterans; and found those who had a head injury were 69% more likely to suffer a stroke. That risk was highest within the first year following injury but remained elevated for about a decade. Plus, risk was higher in those who had more severe injuries. These findings illustrated that “this risk persists for years after injury,” said Schneider, assistant professor of neurology and epidemiology at the University of Pennsylvania Perelman School of Medicine in Philadelphia.
A traumatic brain injury is one that results in unconsciousness, confusion, amnesia or other neurological symptoms. About 450,000 service members were diagnosed with a traumatic brain injury between 2000 and 2021, according to the Department of Defense. Schneider said military personnel are exposed to specific risks, such as explosions, that can lead to these types of serious injuries. In the general population, people could experience brain injuries playing sports or in motor vehicle accidents. Among older people, falls are the most common cause of such injuries.
To explore how traumatic brain injuries may relate to stroke, Schneider and her colleagues looked at data from 306,796 people in a Veterans Health Administration database who had a traumatic brain injury within the timeframe of October 2002 to September 2019. They compared those people’s risk for stroke to an equal number of people who had not had a brain injury.
Researchers calculated 10.3 strokes per 1,000 people per year among those with traumatic brain injuries. That’s compared to 5.7 strokes per 1,000 people per year in those without brain injuries. After adjusting for factors such as income, education, smoking status and medical and psychiatric conditions, the researchers found a traumatic brain injury significantly increased the risk of stroke by 69%.
The increased risk varied by type of stroke. For an ischemic stroke – the most common type, where blood flow to the brain is blocked – the risk was 56% higher in the veterans with traumatic brain injuries compared to those without. For a hemorrhagic stroke – which causes bleeding in the brain – the risk was nearly four times higher in those with brain injuries. The findings are considered preliminary.
Dr. Mitch Elkind, a neurologist at New York-Presbyterian Hospital/Columbia University Irving Medical Center in New York City, said the more immediate increased risk of stroke after brain trauma may be related to damage such as torn arteries. “But this study provides evidence that traumatic head injury may lead to a long-term increased risk of both ischemic and, particularly, hemorrhagic stroke,” said Elkind, past president of the AHA. However, he was not involved in the study.
The findings should prompt further studies to identify the reasons behind the connection, he said. “It may be that head injury is another insult, like the transient inflammation associated with infection, that increases long-term stroke risk.”
It’s possible that unmeasured factors such as medication use – or lack thereof – could account for these results, he shared. Survivors of traumatic brain injuries, for example, may be more likely, “if they have associated cognitive problems, to be less adherent to medications for hypertension.”
Schneider agreed further research is needed but said the findings suggest people with brain injuries should be aware of the possibility of permanent damage that may affect their blood vessels. They should be extra aware of risk factors that can be controlled, such as high blood pressure, diabetes and high cholesterol.
“We want everybody’s diabetes and blood pressure to be controlled,” she said. “But what this research may suggest is that maybe it’s even more important in people who’ve had a traumatic brain injury.”
The nationwide baby formula shortage is creating high stress among worried parents, leaving some babies hungry and/or ill and raising questions about how such a critical good could be in short supply throughout the U.S., one of the wealthiest nations in the world.
The shortage stems from a massive recall that began in February 2022, following the hospitalization of five infants (starting in September 2021) who consumed formula processed at Abbott’s plant in Michigan. Two children died because of bacterial infections caused by these products. Reports have circulated that a whistleblower, a former plant employee, shared food safety concerns with FDA officials and, subsequently, the plant was shut down.
Because Abbott is a primary formula supplier – not far off from being a market monopoly – families have been left scrambling. Remarkably, just four companies control nearly 90% of the U.S. formula market, according to NPR. And Abbott is a major producer of specialty formulas, which are essential for the well-being of many people even beyond infanthood. They’re consumed by children, teens and adults with food allergies and other medical conditions, including those with gastronomy tubes and/or disability needs that impede nutritional intake.
“People don’t realize that there are kids out there that have some serious medical issues that have to take these really specialized formulas,” Bryan Harding shared on TODAY. Bryan and his wife, Alison, have 16-year-old twins who rely on formula every day. Hannah and Sarah have cerebral palsy, seizure disorders, reflux and trouble breathing.
source: Shutterstock
A Majority Need
The American Academy of Pediatrics (AAP) recommends that babies be breastfed exclusively until 6 months of age, with continual consumption of breastmilk along with other foods until about one year old. But the reality is that only one-quarter of babies in the country are exclusively breastfed by the time they’re 6 months old, and just 35 percent go on to achieve the 12-month benchmark.
You see, mothers may not breastfeed (or halt sooner than recommended) because of physical challenges, inability to lactate, insufficient parental leave and other reasons. Thus, the majority of American parents rely, solely or in part, on formulas.
Sharing is Caring Gets Complicated
In an effort to help those in need, some lactating mothers have committed to donating their breast milk – both formally and informally. Formal milk sharing typically runs through milk banks, like the Human Milk Banking Association of North America. Organizations like this conduct donor screenings, test milk to ensure safety standards and also pasteurize milk. But, because most milk from banks is distributed through hospitals for preterm babies, some parents are exploring informal sharing options. The AAP and the FDA, however, both discourage casual sharing because of the risk of contamination or poor quality.
The sharing of formulas can be less complicated than sharing milk. Thanks to social media platforms, families have created swap pages to donate or exchange formulas and help connect others to local supplies. Still, many have spent hours driving to find formula, searching online and calling in favors.
Born five weeks prematurely and underdeveloped, 4-month-year-old Cole requires a special nutrient-enriched formula. His mother, Megan Daniels, who lives in Florida, says she couldn’t find any formula canisters nearby. “I was fortunate that our out-of-state family in Pennsylvania and New Jersey found his specialty formula and sent it down to us,” she tells AmeriDisability. When the shipment arrived, Daniels even donated two canisters to other mothers of preemies who were in dire need. “It’s certainly scary!”
source: Shutterstock
Lia Daley, mom to 5-month-year-old DJ, has been frantically looking for specialty formula too. The New York resident told Insider that her son suffered stomach issues when the shortage forced her to try different types of formulas. DJ has a milk allergy and needs a specific hypoallergenic formula. Similarly, Michigan mom Alison Zanella says tummy issues also arose for her 5-year-old son, Dominic, when a formula change was forced. Dominic has a rare form of neuromuscular disease plus food allergies. Unfortunately, dwindling hypoallergenic options are life-threatening.
As is the case for the Harding family as well. Because of yet another formula shift, Sarah developed a viral infection that required hospitalization. Doctors decided to change the twin’s feeding tube to bypass her stomach and, instead, go directly into her small intestine. Of course, so many other families are also grappling with health consequences and added hurdles due to this nourishment crisis.
Advice from Experts
The AAP warns parents to not feed homemade formula to infants. Babies should be fed only breastmilk or iron-fortified formula that’s prepared according to package directions. That means formula-to-water ratios should not be altered (in an attempt to stretch supply). Homemade concoctions can be harmful to infants, especially if nutritional quantities are off.
The AAP has published common questions and answers associated with the formula shortage. Access this information by clicking here. Information published on AAP.org is more intended for medical professionals; however, AAP also hosts a parent website, HealthyChildren.org, with helpful guidance. If your loved one uses a specialty formula for allergies or other special health needs, the North American Society for Pediatric Gastroenterology, Hepatology & Nutrition has a list of comparable formulasto consider; but do consult with your physician as well.
source: Shutterstock
Replenishing the Supply
In mid-May, Robert Ford, the CEO of Abbott, penned an apology in an op-ed published in the Washington Post. “We’re sorry to every family we’ve let down since our voluntary recall exacerbated our nation’s baby formula shortage,” wrote Ford. Adding, “We believe our voluntary recall was the right thing to do. We will not take risks when it comes to the health of children.” Ford also announced that Abbott will establish a $5 million fund to help those families with medical and living expenses until the supply crisis is relieved.
The White House administration is also taking action. In May, President Biden invoked the Defense Production Act to boost the production of baby formula and authorized the Defense Department to help fly formula in from overseas. The first overseas shipment, mostly containing hypoallergenic formulas, recently arrived in the U.S. Additionally, Abbott obtained approval from the U.S. District Court to release limited quantities of its EleCare specialty amino acid-based formulas.
This news is a relief for many, including Treva Worthy, whose 14-year-old, Ahmad, uses EleCare Jr. She told an NBC affiliate that her son has intellectual disabilities and severe allergies. Worthy admits that she felt desperate enough to resort to rationing Ahmad’s formula supply which, sadly, led to an unhealthy weight loss.
With a newly established agreement with the FDA, Abbott’s plant is set to reopen during the first week of June 2022 and will ramp up production of its formula products, with a priority to produce ample hypoallergenic formula. Many questions and concerns remain. Will this significant supply chain disruption alter how the formula market operates? Some are calling for evaluations of the lack of market competition, contract exclusivity and safety review processes. Time will tell…
Whether you’re toasting a special occasion, complimenting a healthy meal or simply sipping to relax after a stressful day, there are many reasons to enjoy a glass of wine. That’s because wine makes us feel happier ─ quite literally. The alcohol in wine has been shown to trigger the production of dopamine in the brain and, thus, cause cheeriness.
Well, there’s another good reason to feel happy about drinking wine. You see, some winemakers give back to important causes, including those impacting the disability community. Research suggests that when we do something good, a happiness high ensues. That means choosing wines wisely can stimulate the “do good, feel phenomenon.” Talk about a spot-on definition of “happy hour!”
Here’s a list of wines that support disability initiatives:
Aspen Lane Wine Company
Bob and Sonya Evanosky, of Aurora, Illinois, opened the city’s first winery in 2016. Their business venture came to life after the couple realized their love for winemaking could further their goal of raising money for charities serving people with disabilities.
The Evanoskys are parents to three children — one of whom is deceased — and each was diagnosed with a genetic disorder called metachromatic leukodystrophy (MLD). This rare condition affects the nerves in both the central nervous system and the peripheral nervous system. There is currently no known cure for MLD, but the Evanoskys are helping to work toward one.
They established the Evanosky Foundation, and then the Aspen Lane Wine Company which, occasionally, incorporates an inclusive workforce into their small operation. And this business is truely a labor of love. “We are 100% social enterprise which means we give all of our profit away once our expenses are paid. My wife and I take no salary,” Bob shared with AmeriDisability.
The company offers eight different wine varieties, most of which are branded with labels featuring their children. Wine drinkers can make purchases in their store or online (to be shipped). All sale proceeds, which recently surpassed $500,000, have impacted the mission of 35 charities thus far and counting, all of which engage in research, treatment, programs or other efforts supporting people with disabilities.
source: Shutterstock
Colby Red
Wine country resident Colby Groom was born with a hole in his heart and a deformed aortic valve. Like Colby, approximately 40,000 babies in the U.S. are born each year with some type of congenital heart disease (CHD), which is the nation’s leading cause of birth defects.
Colby underwent open-heart surgeries and, eventually, became a passionate volunteer for the American Heart Association. When he was just 11 years old, kind-hearted Colby asked his father, a winemaker, to collaborate on a new wine variety to benefit heart disease research. Together, they created Colby Red, a blend of five grape varieties with aromas of cherries, raspberries and star anise.
In 2017, Colby Red became the first “cause-marketed” wine to achieve the milestone of $1 million in donations to charities. This smooth-finish wine is sold at Total Wine, Walgreens and other major retailers.
CK Mondavi & Family
CK Mondavi and Family wines declare themselves as “the first and only to be 100% Made in USA Certified.” The longstanding brand, based in Napa Valley for 75 years, literally pours out its patriotic roots by supporting the Intrepid Fallen Heroes Fund (IFHF). This effort builds centers that treat military personnel suffering the effects of traumatic brain injury (TBI), post-traumatic stress disorder (PTSD) and other disabilities.
CK Mondavi & Family has donated more than $215,000 to IFHF. Plus, sale proceeds from the company’s Purple Heart Wines red blend benefit veterans and their families through the Purple Heart Foundation.
source: Shutterstock
EFESTĒ
At EFESTĒ, winemaking is inspired by family and made by family. With two winery locations in Washington state (Seattle and Woodinville), the business is jointly owned by Helen and Daniel Ferrelli along with their daughter and son-in-law, Angela and Kevin Taylor.
Angela and Kevin’s son, Joe, was diagnosed with leukemia, a cancer of the body’s blood-forming tissues including the bone marrow and the lymphatic system. He was just five years old at the time of diagnosis. With a namesake conveying the remarkable strength that Joe displayed during his treatment, EFESTĒ launched its Tough Guy line to benefit research and programs led by the Leukemia & Lymphoma Society. Tough Guy wine is silky with scents of cherry, lavender and olive.
EFESTĒ also hosts its annual Rockin’ Sips Benefit party to benefit the Leukemia & Lymphoma Society.
Ehlers Estate
Ehlers Estate is a vineyard winery located in St. Helena. Through a charitable trust, it is owned by the Leducq Foundation. Proceeds from tastings and wine sales benefit the Leducq Foundation, which is an international grant-making organization dedicated to advancing research in cardiovascular disease and stroke.
ONEHOPE
Inspired by a friend’s battle with cancer, one of the founders started raising money for a health cause by humbly hosting wine tastings. The concept of gathering for wine to benefit an important cause took off and, so, ONEHOPE became an official, intentional winemaker.
ONEHOPE is now one of the largest direct-to-consumer wineries in the world and has proudly donated over $8 million to local and global causes, mostly centered on access to clean water, education, disability support and health research.
One of ONEHOPE’s primary initiatives is aiding members of the autism community. The company has sponsored many children with autism from low-income families to attend camps, therapy programs and receive other educational scholarships. Additionally, ONEHOPE has granted holiday presents, experiences and much more to families with children who have various special needs.
Rosewood Winery
Rosewood Services was founded in 1998 with a goal to foster independence, inclusion and productivity through education, work, recreation and housing for people with developmental disabilities in Central Kansas. In addition to empowering people with disabilities through medical, residential and case-management services, Rosewood Services offers unique job coaching and vocational training.
Rosewood Services operates with an inclusive staff of horse ranchers, studio artists, culinary staffers, furniture builders, clerical assistants, a lawn crew and, yes, winemakers. About two dozen vino employees with disabilities participate in the entire winemaking process, from filtration to packaging to shipping. In 2021 alone, Rosewood Winery bottled 3,000 gallons of wine!
Rosewood Winery claims to be the only winery in the country designed to provide employment opportunities to people with developmental disabilities.
Staglin Family Wine
Founded in 1985, the Staglin Family Vineyard operates a sustainable company by farming organically and using solar power. In addition to those impressive efforts, their business motto says it all: “Great wines for great causes.” The Staglin Family has helped raise more than $1 billion to support charities, including its main effort of sponsoring the Music Festival for Brain Health.
The Music Festival for Brain Health benefits One Mind, a nonprofit supporting research, education, treatment and awareness about brain disorders and mental health. Staglin Family Vineyard is set to present the 28th Music Festival for Brain Health, including a VIP Wine Dinner, on September 10, 2022. Click here for more info.
Also Try:
Liquid Geography Mencía Rosé by Olé & Obrigado ─ Fifty percent of profits are distributed between Memorial Sloan Kettering Cancer Center to support cancer care, research and education, and Wheeling Forward to help those with disabilities experience life to the fullest.
Wander & Ivy – a disability-owned wine company that donates one percent of sales to charitable organizations delivering healthy foods to those in need.
More Wine Organizations to Cheers
Diversity in Wine & Spirits: This organization aims to create an inclusive, diverse and equitable hospitality industry by providing scholarships/grants and numerous resources geared towards leadership and professional development.
Diversity in Wine Leadership Forum: This efforts strives to connect inclusive initiatives in the wine industry to foster collaborative efforts and problem-solving among advocates and leaders.
Grapes for Humanity: This not-for-profit raises money by hosting wine tastings, wine dinners, wine auctions and other wine-related activities. Funds aid a variety of projects, including those that engage people with disabilities.
Uncorked Access: This organization strives to make the wine industry more accessible, specifically among the Deaf and Hard-of-Hearing community, through workshops, speaking engagements and accessibility consulting. It also offers American Sign Language (ASL) wine education.
Wheeling Forward: This nonprofit, which provides people who are recently disabled with the motivation and resources needed to resume active lives, was co-founded by Yannick Benjamin, a sommelier who suffered a spinal cord injury. Among other programs, Wheeling Forward hosts its signature fundraiser, Wine on Wheels, to bring diverse people together from the hospitality industry to pour wines, socialize and raise funds for the cause.
Is Wine Beneficial?
The debate over alcohol intake is a doozy. That’s because its effects on a person’s wellbeing have been described as a double-edged sword. Drinking too much alcohol may increase risk of an array of health problems, including cancer, depression, high blood pressure, liver disease, obesity, stroke, suicide and, of course, alcoholism. However, studies have also found that drinking can be beneficial.
According to research recently presented at the American Heart Association’s 2022 Epidemiology and Prevention, Lifestyle and Cardiometabolic Health conference, drinking a glass or two of wine with meals – but not at other times – may help lower the risk of developing Type 2 diabetes. These latest findings focused on when consumption takes place versus quantity follows previous findings citing that red wine may be good for heart health because it contains antioxidants such as resveratrol, which can reduce cholesterol, blood pressure and inflammation, and prevent other chronic conditions.
Note: Experts recommend no more than one to two drinks per day for men and one drink per day for women. If you drink, do drink responsibly and always use a designated driver.
Williams syndrome is a rare genetic disorder that most people know nothing about. That’s because Williams syndrome has only been on the medical radar for about 50 years. And experts are still trying to figure it out, with ongoing research led by organizations such as the Williams Syndrome Association.
According to the Williams Syndrome Association (WSA), Williams syndrome is caused by the spontaneous deletion of 26-28 genes on chromosome #7 at the time of conception. In most families, the child with Williams syndrome is the only one to have the condition in his/her entire extended family. Williams syndrome affects about 1-in-10,000 people worldwide and an estimated 20,000 to 30,000 people in the United States.
Medical and developmental problems, including cardiovascular disease and learning disabilities, typically occur – but side-by-side with striking abilities. These include advanced verbal skills, highly sociable personalities and an affinity for music.
Need for an Awareness Month
Among other health observances, May is Williams Syndrome Awareness Month, but awareness advocates attempt to raise awareness of Williams syndrome every day of the year. It’s only through awareness that they can attract the research interest and funding support that’s needed to answer the myriad of unanswered questions revolving around the syndrome.
During the month of May, volunteers across the country help the WSA by hosting various events designed to promote awareness of Williams syndrome, like picnics, fundraisers, educational events, walks and more.
A Mother’s Tale
In her recently-released book, Another Day, Another Challenge: the Biography of a Child with Williams Syndrome, author Marjorie Strebe gives a first-hand account of her daughter, Michelle, as she shares some of the heart-warming moments and many of the challenging experiences of raising a child with Williams syndrome.
“Friendly to a fault, these children know no strangers,” said Strebe. “They’ll hug anyone, anywhere. They’ll go with anyone, which can be a blessing if they’re meeting a family member for the first time. But it’s a dreaded nightmare at the grocery store or around the neighborhood. They have no concept of dangerous situations or people.”
An Air Force veteran herself, Strebe grew up in a military family and married an Air Force Tech Sergeant. Their daughter, Michelle, is the youngest of three children and their only child with special needs.
Click here to read more stories about families impacted by Williams syndrome.
“Long Haul Voices highlights how people with ME/CFS and Long Covid can share their journey to improve the management and understanding of these diseases across the world,” said Oved Amitay, president and CEO, Solve M.E.
“There is nothing more powerful than sharing authentic stories of individuals who are suffering from these often-debilitating diseases,” added Amitay. We must continue to shine a light on the difficulties of living with complex, chronic conditions that have no FDA-approved treatments or cures.”
source: Shutterstock
The mini-series, created in partnership with Unfixed Media Productions, is directed by award-winning filmmaker Kimberly Warner and edited by Emmy award winner Michael Wolcott, both of whom live with chronic disease. Each featured member of the Long Haul Voices cast shares a connection to ME/CFS and/or Long Covid. Cast members include:
Before the pandemic, experts estimated there were up to 1 to 2.5 million cases of ME/CFS. Now, after two years of COVID-19, those same experts estimate between 5 and 9 million cases of ME/CFS. And a similar explosion of cases is happening with other post-viral conditions. Long Covid is estimated to affect 22 million U.S. adults – close to 7% of the population. Last month Solve M.E. released a whitepaper that provided a startling, in-depth look at the prevalence of Long Covid in the United States.
Solve M.E. is also in the midst of its annual Advocacy Month, a nationwide advocacy effort empowering people with ME/CFS, Long Covid, and other chronic illnesses, scientists, clinicians, and caregivers to share their unique stories with Congress.
Understood, a social impact organization and lifelong guide for those with learning and thinking differences, like ADHD and dyslexia, unveiled a comprehensive diversity, equity, and inclusion (DEI) offering that includes on-demand and virtual live disability inclusion training, as well as workplace assessment and action plan services for employers invested in building inclusive workplaces.
The new training program launches with partners, including the 4A’s (American Association of Advertising Agencies), which will offer Understood’s online and live virtual training to its member agencies, as well as Save the Children and Culture Amp.
This announcement comes on the heels of Understood’s “Employee DEI Experience” research, which found that while 64% of American employees feel their place of work values diversity and shows it in their actions, among that group only 47% saw neurodiversity as something that was supported by their employer.
Source: Understood
“One in five of all of our employees learns and thinks differently, so it’s imperative to shape our workplaces to be inclusive,” said Yvonne Cowser Yancy, Chief Administrative Officer and Head of Workplace at Understood. “To do that, we need to raise awareness, build knowledge, and promote action. As experts in this space, we can help HR leaders, DEI managers, and CEOs establish more accessible, inclusive environments where people with all types of disabilities can thrive.”
The fact remains that not everyone experiences the workplace in the same way. People with disabilities are continuously left out of recruiting and hiring efforts. The Bureau of Labor Statistics reports that the 2021 unemployment rate for people with disabilities was twice that of people without. A key reason for this may be that 61% of managers and 51% of HR professionals have never participated in disability and inclusion training, according to Understood and Society for Human Resource Management’s Employing Abilities @Work Report. Meanwhile, the same study showed that less than 15% of organizations invest in disability inclusion initiatives at work.
As companies focus on improving their rhetoric and actions around neurodiversity, Understood’s workplace program is relevant to all levels and functions of an organization. By breaking down stigma and misconceptions, educating staff, and enhancing the capabilities to implement disability inclusion, this offering supports Understood’s long-standing commitment to making workplaces more equitable, supportive, and productive for all.
source: Understood
The product suite includes:
On-demand training: A self-paced, scalable online training with an evidence-based curriculum. Users create a customized experience that works best for them.
Virtual live training: Interactive training led by disability inclusion experts. Learners practice inclusive behavior and get tips and tools to use on the job.
Workplace assessment and action plan support: An in-depth analysis of processes, practices, and documents. Companies get a detailed plan to make their workplace more inclusive.
“We are proud to partner with Understood as part of our Agency Enlightenment programming,” said Sean McGlade, Senior Vice President, Talent and Learning Solutions at the 4A’s. “As agencies seek to define the future of work, it is important to educate our members about the importance of incorporating learning and thinking differences as part of their DEI strategy. By creating an environment of belonging, we will allow people to be their best selves and thereby produce impactful, creative work for their clients.”
“Save the Children’s work is fundamentally rooted in supporting children, families, and communities most impacted by inequality and discrimination, so it’s critical for our teams to learn about the experiences of those with disabilities and learning and thinking differences,” said Debbie Pollock-Berry, Chief People and Culture Officer at Save the Children. “We are proud to partner with Understood as we continue to invest in our organization’s diversity, equity, and inclusion efforts and help shape a world where everyone — regardless of their backgrounds, circumstances, and abilities — is respected, supported, and empowered.”
To learn more about Understood’s disability inclusion workplace program, visit understood.org/workplace.
Do you follow ‘Barbie’ on Instagram? If not, you may have missed some ground-breaking toy industry news. Just announced on May 11, 2022, Barbie shared via the social platform that upcoming additions to Barbie’s Fashion Doll line will focus on disability representation and diversity inclusion. This includes a Barbie with a behind-the-ear hearing aid and a Barbie with a prosthetic leg; plus, a Ken doll with vitiligo, a condition where the skin loses pigmentation and appears blotchy.
The line will also integrate other aspects of inclusion, such as various body types and hair textures. In fact, a company statement described the upcoming line as its “most diverse and inclusive doll line.”
Lisa McKnight, EVP, Global Head of Barbie & Dolls Portfolio at Mattel, also shared, “Our Barbie Fashionistas line features a range of skin tones, body types and disabilities to reflect the diversity kids see in the world around them. Knowing that kids’ early childhood experiences help shape how they perceive the world, we are dedicated to reflecting a multi-dimensional view of beauty and fashion in our dolls.”
source: Barbie via Instagram
Initial consumer response appears to be overwhelmingly positive. One Instagram respondent, for example, said: “As someone who grew up with Barbie being her favorite toy, collects Barbie as an adult, and has worn a hearing aid since the age of five…..THANK YOU!!!! This brought tears to my eyes.”
This isn’t the first time Barbie’s parent company, Mattel, engaged the disability community with an inclusive product. Back in 2000, a Barbie doll with vitiligo debuted and quickly rose to be one of the top five best-selling Fashionistas at the time. Summer sales will soon reveal if the new Ken doll will garner the same level of success. And more recently in 2020, Mattel introduced a Barbie wheelchair user. This may be the first time, however, that the toymaker worked with medical professionals to ensure accurate representation. Dr. Jen Richardson, an audiology expert and hearing loss advocate, consulted on the inclusive design.
“I’m honored to have worked with Barbie to create an accurate reflection of a doll with behind-the-ear hearing aids. As an educational audiologist with over 18 years of experience working in hearing loss advocacy, it’s inspiringto see those who experience hearing loss reflected in a doll,” Richardson said. “I’m beyond thrilled for my young patients to see and play with a doll who looks like them.”
Barbie, which first debuted in 1959, now has more than 175 different types of dolls. Those eager to infuse disability representation into their Barbie collection can purchase the new dolls starting in June 2022, which just so happens to align with the 32nd anniversary of the Americans with Disabilities Act. Dolls will be available via Amazon, Target and other retailers.
Three-year-old Colin Jr. loves dinosaurs. He makes a fierce dinosaur roar but, unlike his preschool peers, he’s never said the name of his favorite dinosaur species: “T-Rex.” It’s just two syllables. Although most 3-year-olds can have short two- to three-sentence dialogues (inclusive of the full word “tyrannosaurus”), T-Rex is currently beyond Colin’s vocabulary.
His pediatrician initially mentioned concern about developmental delays at his 18-month appointment, and again at his 24-month visit. “Looking back, it’s hard as a parent to come to terms with things your child is (or is not) doing, especially when you don’t really have much to compare it to. I never had a son before,” explains Christa Sweeney, Colin’s mother. “My [older] daughter more so followed typical developmental timelines, but I had heard that boys can take longer to speak and mature.”
Indeed, studies show that language development varies between the sexes (in association with prenatal testosterone), with males generally gaining language skills at a slower rate, according to the Women’s Health Research Institute. And in addition to the language deficits, males seem to be more likely to show delays in fine-motor function and personal-social skills at age three. So, assuming he had just a minor, common delay, Christa proactively enrolled her “happy boy” in Early Steps, an intervention system run by the Florida Department of Health that offers services to eligible infants and toddlers who have or are at-risk for developmental disabilities or delays.
Colin, wearing swimmy floats, swims in a pool with his toy dinosaurs overlooking on the pool edge. | source: Christa Sweeney
At that time, evaluators noted that Colin was displaying signs of autism spectrum disorder (ASD), including delayed speech, the need for specific routine, repetitive movements and lining up of toys, among other indicators. But Colin wasn’t found to be autistic after being further evaluated by a double-board certified Developmental Behavioral Pediatrician, Dr. Sandra Cely of Developmental Behavioral Pediatrics of Central Florida.
“As an expert in the field, she found him to be very expressive and communicative, but unable to verbally speak,” Christa says. Thus, Colin was diagnosed with childhood apraxia of speech (CAS), a speech sound disorder. According to the National Institute of Deafness and Other Communication Disorders, this neurological condition affects the brain pathways involved in planning the sequence of movements involved in producing speech. The brain knows what it wants to say, but cannot properly plan and sequence the required speech sound movements. CAS is not the same as developmental delays in speech, in which a child follows the typical path of development but more slowly.
Secondary to CAS, Colin also has severe receptive/expressive language disorder, which can make conveying information even more challenging. While he’s more than three years of age, tests show that Colin’s receptive language equates to that of a young infant.
Entering (and Navigating) the Disability Commuity
As is the case for many parents entering the disability community alongside their child with special needs, Christa and her husband, Colin Sr., embarked on a crash course to learn about this uncommon, misunderstood disorder. The nonprofit Apraxia Kids estimates that 1-in-1,000 children are affected by CAS.
“You kind of go down this rabbit hole with what you think you need to help your child. It can become obsessive ─ researching online, following various support groups on social media, exploring different cognitive and diagnostic test options… and insurance really doesn’t cover anything related to apraxia of speech, so it’s tricky,” says Christa, a native of New Jersey who now resides in Sanford, Florida. But Colin’s healthcare team helped the Sweeney family shift their focus to better support him. “I am not frustrated in the ‘why’ anymore. I am more involved in chasing the how [to best help him],” Christa says.
The Sweeney family advocates for childhood apraxia of speech awareness. Picture: 7-year-old Reagan, Colin Sr., Christa, 3-year-old Colin Jr.
Colin started private speech therapy sessions when he was around two years old; initially via Zoom during the pandemic and, eventually and much more effectively, face-to-face. Then, once he turned three, Christa connected with her local school system to create an Individualized Education Program (IEP), a written document that’s collaboratively designed to meet a child’s unique special educational needs.
Colin is currently receiving therapy in the public school system, under the disability category of language impairment, with twice-weekly speech therapy sessions; in addition to the developmental therapy sessions that the Sweeneys have privately continued.
Unlocking a Voice
Colin’s speech therapist is working to increase his functional communication skills by imitating a variety of basic consonants and vowels. The plan is to improve his ability to imitate individual sounds to then link sounds into syllables, and syllables into words.
And that plan is already proving to be successful! “Colin’s vocabulary is improving every day from the therapy he is receiving and it just warms my heart to hear him speak up and answer questions [in class],” says Kelsey Beall, his preschool teacher at Academy of Excellence. “Colin is bright and he’s the sweetest boy. He certainly doesn’t let his apraxia of speech get in his way of learning or making friends. Colin is very loved by his classmates and I adore teaching him!”
Others agree that progress is underway. “Colin is one of the most determined and patient children I have worked with,” says Jennifer Foret, an Infant Toddler Developmental Specialist. “He has learned to use a variety of communication methods, such as sign language, gestures, visual supports, word approximations, words and his iPad to communicate what he is thinking, feeling or requesting.”
Colin enjoys attending preschool. | source: Christa Sweeney
The Sweeneys encourage all forms of communication. “I just want to be able to communicate with him, in whatever way he does so. I’d say he primarily uses sign language at this point but, hopefully, his verbal communication will continue to improve over time.” Remaining flexible is key, especially since Colin often feels frustrated when misunderstood, as is common with CAS.
“Colin’s family is supportive and loving. They show persistence and consistency working to increase his ability to communicate,” Foret attests. “They also let Colin be himself, give him so many opportunities to just have fun and play with family and friends; and they make sure he is provided with the best learning opportunities that engage his imagination and creativity. He uses that creativity, and the confidence instilled by his parents, to make sure his voice is heard, no matter which method of communication he is using at the time.”
Continuing the Conversation
Each child with CAS is unique, and how quickly they learn to talk or improve oral communication is dependent on several variables, says Apraxia Kids. However, experts agree that early intervention is essential.
“Research-based treatment should start early and be matched to the level of severity of CAS. Even though this process can be overwhelming for parents to navigate, there are several resources available that can guide caregivers through each step of diagnosis and treatment,” Foret says.
As to not experience the “summer slide,” a common educational regression that occurs during break periods, Colin will continue private therapy sessions throughout the summertime, and then return to the public school program in August. Christa acknowledges that a CAS journey comes with many hurdles ─ within education, healthcare, insurance and the community at large.
Colin likes playing with his friends. | source: Christa Sweeney
But advocating for Colin is key. “He is the sweetest little boy. He loves hugs and interacting with other people. I just think he’s perfect!” Christa declares.
Parents are the best advocates for their children. If you suspect that your child may have a speech delay or CAS, seek help through a pediatrician, a speech-language pathologist or Early Steps office; and explore resources at Apraxia-kids.org and ChildApraxiaTreatment.org (including free courses for parents and professionals).
