Cancer & Down Syndrome Explained at Amgen/Global Congressional Briefing

On September 14, 2018, Biotech powerhouse Amgen and the Global Down Syndrome Foundation (Global) hosted a first-in-kind Congressional Briefing attracting world-renowned cancer speakers from both the science and the medical fields. This important DC briefing attracted health staffers from both sides of the aisle, numerous families, and self-advocates. Attendees learned about the increased risk of leukemia and the decreased risk of solid tumor cancers for people with Down syndrome and how Congress and the NIH can support Down syndrome-Cancer research.

Key speakers included Joaquín Espinosa, Ph.D., the Executive Director of the Linda Crnic Institute for Down Syndrome and co-Leader of the Molecular Oncology Program at the University of Colorado; Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation; John D. Crispino, Ph.D., Professor of Medicine (Hematology and Oncology) and Biochemistry and Molecular Genetics and Northwestern University; and Joan D. Morris, M.D., Global Development Research Clinical Medical Director at Amgen.

Photo Cred: Michael Campbell Photography

Learn more about the latest Down syndrome-Cancer research and how Global is lobbying Congress to get more funding from the NIH for these important discoveries.

From Down Syndrome World 2016 Winter Issue

Global celebrates one of our favorite cover story features from 2016! Since then, the now Emmy-award winning Megan Bomgaars continues to rise in fame and Kenneth Faried still heating up the basketball court, now playing for the Brooklyn Nets.

Megan Bomgaars, one of the stars of A&E’s hit reality show Born this way, and Denver Nuggets’ power forward Kenneth Faried confronted their own unique challenges growing up. Today, both are using their wildly different talents and abilities to get one message across — even when life Isn’t easy, determination can make it rewarding.

AT FIRST GLANCE, the average person wouldn’t think that a bubbly 4-foot-11-inch, 22-year-old self-advocate and budding TV actress has much in common with a 26-year-old, 6-foot-8-inch NBA player. But these two Global Down Syndrome Foundation supporters share two traits: a passion for life and a desire to encourage kids to be their own self-advocates.

“I had a positive attitude and believed in myself in high school,” Bomgaars said. “Nobody should be limited just because they have Down syndrome.”

Added Faried, “Just because kids are different, doesn’t mean they should be picked on. Everyone needs to be treated equally, no matter their color, differences in ability, or anything else.”

Of course, both followed very different paths to arrive at these very similar philosophies.

THE ROAD TO THE SILVER SCREEN

Bomgaars is one of six young adults with Down syndrome chosen to star in Born This Way, the A&E series that offers an intimate look into the lives of young men and women with Down syndrome. She landed the spot after catching the attention of the show’s producers while delivering a keynote address — one of many motivational speeches she delivers each year — at the 2015 National Down Syndrome Congress Annual Convention.

“Being involved in the TV show is important,” the young actress noted. “It changes people’s lives, and I want to share my story with the rest of the world.”

Bomgaars’ story begins with a childhood that was filled with speech, occupational, and physical therapies. In addition to a heart defect and a need for leg braces, she experienced­­ feeding, respiratory, and vision problems as a very young child.

Her mother, Kris, attributes much of Bomgaars’ success in overcoming medical and developmental issues to a team of innovative therapists. Not only did they teach Kris how to continue her daughter’s therapies at home, but they also encouraged her to include Megan in everyday activities. When Bomgaars was 18 months old, Kris enrolled her in a typical childcare program. Interacting with other children her age, Bomgaars learned basic social skills and even sign language.

“That philosophy of inclusion has stuck with us ever since,” Kris said. “Megan has always been determined to do everything that her peers could do and more.”

Bomgaars carried that determination throughout elementary and high school. At age 19, she made the viral YouTube video, Don’t Limit Me, to encourage others to have high expectations for individuals with Down syndrome. A year later, she launched her own line of tie-dyed fashion accessories, called Megology.

At times, Bomgaars’ success even takes her mother by surprise. “I often hear other parents say ‘My kid could never do that,’” Kris said. “When Megan was born with multiple medical challenges and I was feeding her through a tube, I never would have expected in a million years that she would be as strong as she is today. I attribute it to her always raising the bar for herself.”

In 2015, Bomgaars’ feisty spirit earned her a trip to the White House. She and Devon Adelman represented the Global Down Syndrome Foundation as the first students with Down syndrome to be invited to First Lady Michelle Obama’s Reach Higher “Beating the Odds” Summit. The event celebrates young people who have overcome obstacles to enroll in higher education.

“That was a really big deal. It was awesome,” Bomgaars enthused. “And I am beating the odds, right now.”

Bomgaars has had a steady boyfriend, and they’ve talked about getting married, but like most mothers, Kris is concerned they’re too young and wants her to finish college.

“We love each other,” Bomgaars said. “We’ve been together for seven years.” As she mulls her future, Bomgaars attends the University of Colorado, where she’s studying filmmaking during gaps in the show’s production. “I want to make movies that change lives,” she said.

STORY OF A KINDRED SPIRIT

Life through Faried’s lens was a struggle as well, but for different reasons.

“My mother is a lesbian,” Faried said. “Young people whose parents are gay, lesbian, or transgender didn’t always receive the best support at the time, and I eventually had to learn that I couldn’t always get in a fight because some bully had an opinion about my mom.”

The self-described “skinny and long” teenager put his energy into basketball in the hopes it would one day lead to something bigger.

“I believe that if you put your mind and heart into something, you can achieve anything,” Faried added. “My parents always had my back.”

In fact, it was his mother who urged him to leave the environment of gangs, drugs, and violence in their Newark, New Jersey, neighborhood. And he did. In 2007, he started college at Morehead State University, almost 650 miles away in rural eastern Kentucky, where he’d been recruited to play basketball.

His college years were filled with homesickness, which caused his playing to suffer. During his junior year, his mother underwent a kidney transplant, and he became a father for the first time. Nevertheless, true grit and determination paid off. He was named the Ohio Valley Conference’s player of the year in both his junior and senior years, and as a senior, he led the NCAA in scoring, rebounds, blocked shots, and field-goal percentage — all of which contributed to him becoming a first-round draft pick for the NBA in 2011.

“I learned to never give up on something you love,” he said. “Overcoming challenges makes your achievements even more meaningful.”

Faried hasn’t stopped challenging himself during his five years playing for the Denver Nuggets. His public relations manager gave him the nickname “Manimal” because, according to Faried, “I play hard, I’m fearless, I don’t care who the person I’m facing is, and I am going to challenge him.”

In his personal life, however, Faried shows a softer side. Now the father of two daughters, Faried sees himself as someone who should be building bridges and encouraging understanding.

“You never know what challenges other people are experiencing,” he said. “When you encourage others, you are also encouraging yourself, demonstrating that you can make a difference in the world. Megan is the same way — she is a true light in the lives of everyone she meets.

28-year-old Kenneth Faried, who now plays for the Brooklyn Nets, is raising a family, and volunteers with Global Down Syndrome Foundation, walking in fashion shows and forming friendships with the kids he meets on the runway. We sat down with him to learn why he’s so passionate about advocating for people with Down syndrome.

Down Syndrome World: Why are you so inspired by children with Down syndrome?
Kenneth Faried: They’re brave, positive, strong individuals who understand how to live in the moment and love unconditionally. Working with these kids brings me joy and inspires me to take on the challenges of life and embrace every opportunity to live life to the fullest.

What do you tell kids to encourage them to pursue their own passions?
Keep a smile on your face. Let it shine brightly for everyone else around you. Never give up and always believe in your ability to overcome and succeed.

What do you wish you could say to children with Down syndrome everywhere?
Remember that you’re beautiful and never be afraid to be yourself. If people are making fun of you or trying to hurt you verbally, ignore them. Don’t let it get you down. Walk around with your head held high. Choose to be a blessing.

Like this article? Join Global Down Syndrome Foundation’s Membership program today to receive 4 issues of the quarterly award-winning publication, plus access to 4 seasonal educational Webinar Series, and eligibility to apply for Global’s Employment and Educational Grants.
Register today at downsyndromeworld.org!

From Down Syndrome World 2018 Issue 2 of 4

When people first meet 15-year-old Brett Logan, they see a charismatic young man full of joy, laughter, and love. What they don’t see at first glance are the many struggles he has overcome to get to where he is.
From the time Brett was just an infant, he faced severe, life-threatening medical challenges. Doctors questioned if he would live into his adolescent years. Defying the odds, Brett prevailed. But in addition to being a medically fragile child with Down syndrome, Brett developed complex behavioral and social difficulties as a result of the neglect and abuse he endured during his upbringing. One evening when Brett was 8 years old, the local Department of Human Services found him wandering the streets of Greeley, Colorado, by himself in filthy clothes and no shoes. He was sent from foster home to foster home, never truly getting a chance to reach his potential.

A ROUGH START
Born with two heart defects, Brett was diagnosed with failure to thrive. At 20 months old, he had both croup and the flu, which caused his heart to stop and required weeks in the intensive care unit at Children’s Hospital Colorado. During that time, he became addicted to sedation medication and had to be treated with methadone.
When Brett began school, he w as delayed in all areas of development, ranging from nutrition to verbal language. At age 8, Brett was transferred from a different school district into then 22-year-old Jennifer Nelson’s class.
“He was very tiny — about the size of a 3 y ear old at age 8,” Jennifer recalled of the young Brett. “But through all that, I knew there was something really special about him. He had me wrapped around his finger from day one, and we developed a really close student-teacher bond.”
As the school year went on, Jennifer fell in love with Brett’s infectious personality. “He is really loving, empathetic, and funny,” Jennifer said. “He can always make me laugh, and he truly loves others like nobody I’ve ever met.”
After a year of being Brett’s teacher and getting to know him, the 23-year-old, barely out of college, took a life -changing gamble and adopted Brett. At the start of their journey, “they told us he was too old and if he hadn’t learned yet, he wasn’t going to,” Jennifer recalled.
“They were so wrong!”
Brett is now a sophomore in high school, more active and happier than ever before.

BECOMING A FAMILY
After a court hearing where it was clear that Brett would not be returning to his last home, Jennifer stepped up.
“I had decided pretty early on that I wanted to adopt him,” she said. “So many people had given up on him in his life, and I knew he deserved more. Somehow destiny brought us together.”
In 2015, Jennifer and Brett officially became a family. For the first time in his life, Brett had a real home.
“I was happy!” Brett said of learning Jennifer would be his adoptive mother. “My favorite thing about being adopted is that I get to sleep in my bed every night.”
“I will admit, it was very challenging at the beginning,” Jennifer said. “I became a parent of a 9-year-old overnight, when I was just barely out of college myself. I knew he was capable of learning. He just needed someone to teach him.”

THE POWER OF POSITIVITY
With the proper nutrition and medical care, Brett has grown in everyway imaginable, Jennifer said. He is physically larger, very verbal and talkative, and learns new things everyday.
Now a student at Legend High School in Parker, Colorado, Brett has a full calendar with show choir and varsity cheerleading. Off campus, Brett is involved in a number of extracurricular activities as a multi-sport Special Olympics athlete, Junior Denver Broncos Cheerleader, and active participant in Global Down Syndrome Foundation’s Dare to Cheer Camps. In fact, this will be his fourth year attending Dare to Cheer.
His newest interest, modeling, got him on the runway with Sam Cronin, a midfielder for the Minnesota United Major League Soccer team, at Global’s 2017 Be Beautiful Be Yourself Fashion Show.
“I loved everything about the fashion show,” Brett said. “I hope I get to be in it again someday. I loved dancing on the runway with all the cameras on me and the whole crowd cheering! My buddy Sam was awesome. He even gave me a piggyback ride after the show and waited with me until my mom got back.”
Brett still deals with medical challenges, including epilepsy, sleep apnea, and hypothyroidism, all of which have a higher prevalence in people with Down syndrome. But he takes them in stride and continues to prevail. In 2015, he was named an ambassador for Children’s Hospital Colorado for his perseverance through all his treatments.
“I love my doctors at Children’s Hospital, so it was great to be involved,” Brett said. “I got to meet other kids who also battle health issues, and it was great to just be me!”
Brett and his mother don’t know what the future holds, but are excited for all the possibilities that lie ahead.
“Don’t let anyone tell you that something is impossible,” Brett said. “I am proof that challenges can be over come and that you can do anything you put your mind to.”

BRETT LOGAN, IN HIS OWN WORDS
Favorite subject at school: “Guitar, because my teacher lets me have the stage and put on performances for my class.”

Favorite way to make people laugh: “By showing off my muscles or my dance moves!”

Best part of Dare to Cheer Camp: “I love hanging out with my friends and cheering for the audience.”

On being a Junior Denver Broncos Cheerleader: “I love my coaches Jozie and McKenna! They are my favorite part of cheer. I also love performing at the Bronco games. One time Demaryius Thomas threw a football to me on the sidelines!”

Like this article? Join Global Down Syndrome Foundation’s Membership program today to receive 4 issues of the quarterly award-winning publication, plus access to 4 seasonal educational Webinar Series, and eligibility to apply for Global’s Employment and Educational Grants.
Register today at downsyndromeworld.org!

From Down Syndrome World 2018 Issue 2 of 4

In February 2018, a little boy with Down syndrome took the world by storm with his contagious smile, bright blue eyes and charming personality. His name is Lucas Warren, and he’s the first-ever Gerber Spokesbaby with Down syndrome.

The nearly century-old Gerber Products Company is an iconic brand that sells baby food and baby products. Often recognized by its trademark logo, a drawing of the first Gerber Baby, Ann Turner Cook, the company selects a new Gerber Spokesbaby each year. The 1-year-old from Dalton, Georgia, was chosen from 140,000 other contestants to be the Gerber Spokesbaby for the entire year. The Gerber brand personifies the healthy, happy, perfect baby. Choosing Lucas as the 2018 Gerber Spokesbaby challenges negative stereotypes about people with Down syndrome and makes an important statement about inclusion and diversity of those who are differently-abled. Global was able to share the excitement of this historical moment during an exclusive interview with Lucas’ parents, Cortney and Jason Warren.

DOWN SYNDROME WORLD™: TELL US ABOUT THE MOMENT YOU LEARNED LUCAS WON THE GERBER CONTEST.
Cortney and Jason: Our first reaction was shock and doubt, followed by extreme excitement for Lucas! We weren’t able to tell our families and friends until after it was announced.

WHAT AN EXCITING TIME SINCE LUCAS WON! HE HAS MILLIONS OF FANS ON SOCIAL MEDIA, AND EVEN INTERVIEWS ON THE TODAY SHOW. WHAT IS IT LIKE TO BE FAMOUS?
It is a proud moment for us as par ents knowing that Lucas has a platform to spread joy, not only to people he comes in contact with daily but to people all over the U .S. We are so happy that he will have this moment to look back on in the futur e and feel proud.

WHAT ARE LUCAS’ RESPONSIBILITIES AS THE 2018 GERBER SPOKESBABY?
Lucas will represent Gerber in advertisements, social media, and more throughout the year, representing joy and love. In addition, he receives $50,000 for his Spokesbaby title, which we plan to use toward his education.

WHAT HAS SURPRISED YOU ABOUT LUCAS?
What has surprised us the most about Lucas is Lucas himself. Being our first child, and having Down syndrome on top of that, everything is new to us. Seeing him pick up on milestones faster than what doctors and therapists say he should makes us feel so proud of him. He continues to show his doctors, therapists, friends, and family that there are no limits for him.

WHAT DO YOU HOPE HAVING LUCAS AS THE GERBER SPOKESBABY WILL DO FOR THE DOWN SYNDROME COMMUNITY AND SOCIETY IN GENERAL?
We hope this announcement will impact ever yone and shed light on the special needs community. We hope Lucas as the Gerber Spokesbaby will help educate more people that individuals with special needs should be accepted, not limited, and therefore have the potential to change the world.

Like this article? Join Global Down Syndrome Foundation’s Membership program today to receive 4 issues of the quarterly award-winning publication, plus access to 4 seasonal educational Webinar Series, and eligibility to apply for Global’s Employment and Educational Grants.
Register today at downsyndromeworld.org!

Celebs, Awards & A Cancer Connection