How An Unexpected Diagnosis Unveiled A Beautiful Treasure
July 29th, 2021 by admin
Caterina Scorsone and family (photo by Rebecca Couresy)
Actress, advocate, and mother of 3, Caterina Scorsone shares how having a child with Down syndrome challenged her to open her mind. What she discovered changed her life.
Best known for her role as Dr. Amelia Shepherd on ABC’s Grey’s Anatomy, award-winning actress Caterina Scorsone has spent her career playing different characters by learning how to empathize and connect with people, a skill she developed as a child actor in Canada. In November of 2016, Caterina received unexpected news and she had to prepare for her most challenging role yet: mother to a child with Down syndrome.
When Caterina learned that her daughter, Paloma, “Pippa,” had Down syndrome, she recalls feeling scared and intimidated by the diagnosis. “I have always been the type of person who tackles challenges with careful planning and thoughtful preparation, and this, I was completely unprepared for,” Caterina explains. “And that caused me so much anxiety and worry. What type of mother did that make me, not knowing how to care for my own child?”
Honing her years of practice studying how people think, feel, and act, Caterina realized she had all the tools she needed to be a good mother to Pippa. “No one is ready for a Down syndrome diagnosis for their child, but they become ready one way or another, because they have to.
“Pippa has taught me how to be a better mother to all my children, and to be a better person in general. A better friend, sister, daughter, colleague,” says Caterina, who is using her public platform to share her parenting experiences with the world.
A rising advocate in the Down syndrome community, Caterina hopes to spread awareness to society and serve as a source of information and support for families.
Caterina Scorsone with her family (photo by Rebecca Couresy)
Motherhood
Today, Caterina is a mother to three beautiful children: Eliza (9), Paloma aka “Pippa” (4), and Lucinda aka “Lucky” (19 months). She says that while they are all very different from each other, the thing all her children have in common is their very distinct and strong personalities. The proud mother describes Eliza as the problem-solver and creative thinker, Pippa as insightful and determined, and Lucky as fun-loving and strong.
Caterina shares how her ever-changing and ever-growing journey as a parent has continued to challenge her and teach her important lessons.
“When I was pregnant with my first, Eliza, I was so excited and ready to be a mom. I wanted to make sure I was the best mom I could be, so I read all the books and articles I could find on parenting. It was like preparing for a role. By the time Eliza was born, I felt really prepared.
“Three years later, when Pippa was born, the whole game changed. When we received her Down syndrome diagnosis, I was scared. I was intimidated by my lack of knowledge and skill in this area. I didn’t know what her needs would be or how I would meet them. I worried about what the future would hold for her.”
Searching for support and information, Caterina was frustrated by the lack of resources available to new parents of children with Down syndrome. She recalls how, at first, she allowed her frustration to take over, and her mind became overwhelmed with thoughts of fear, worry, and doubt. “My mind was stuck in the future, worrying about all the what-ifs, that I was missing the what-is right in front of me,” Caterina explains.
Caterina realized she needed to put her worries aside and move her focus to the real priority – which was to be there for her children. Shifting her focus to Eliza and Pippa, Caterina’s worries transformed into curiosity. She observed how the two interacted with each other and how both were developing and growing, in their own ways, at their own speed.
Caterina describes Pippa as very determined, insightful, sensitive, fun, and honest. “One of the most beautiful things about Pippa is how connected she is to her experience. If she wants to do something, she is very excited to do it and thoroughly enjoys it. And if she doesn’t want to do something, she is very connected to her gut and knows what she doesn’t want. Pippa’s self-acceptance frees her limiting beliefs, like worry about other people’s expectations of her.
“Once I embraced the diagnosis, I was able to appreciate what it invited into our lives, which was a beautiful shift in perspective that enhanced our whole way of living. Pippa has forced me to leave behind preconceptions about who people are and what they should or should not be like. It allowed me to see every person I encounter as completely unique, no longer subjected to some sort of list of standards that people are either succeeding or failing to live up to. I had to radically reconsider everyone’s individuality, including my own.”
In December of 2019, when Caterina had her third daughter, Lucinda, “Lucky,” she felt more prepared than ever before. Caterina knew this newfound life perspective would instill important values in all her kids and that she could handle any challenge that comes their way with grace. Similar to the creative environment she grew up in, Caterina says the family enjoys lots of dressing up and dance parties together in their home.
Pippa Scorsone daugther to Caterina Scorsone (photo by Rebecca Couresy)
Giving Back
“When Caterina took to Instagram to announce Pippa’s birth and diagnosis with excitement, we could tell right away that she was one of us and that she would be a powerful voice in the Down syndrome community,” says GLOBAL President and CEO, Michelle Sie Whitten. “After developing a relationship with her over the next several years, and learning about her passion for our research, we proudly selected Caterina as the recipient of our 2020 Quincy Jones Exceptional Advocacy Award, GLOBAL’s most prestigious honor.”
Due to COVID-19 restrictions, Caterina accepted the award virtually at the 2020 Be Beautiful Be Yourself Fashion Show. Caterina was proud to be a co-awardee with Spanish model Marián Ávila, who is dedicated to getting people with Down syndrome more represented in the media. “Marián is such a beautiful person inside and out. After the show, she even mailed me a box of ‘Congratulations’ chocolates! It was such a personal, sweet touch,” Caterina remembers.
As a GLOBAL advocate and spokesperson, Caterina aims to use her public platform to raise awareness about Down syndrome and help new parents navigate the diagnosis. “I want to help new parents feel less scared and more excited about their child’s future, knowing that they have support,” she says. “My hope is that as a culture and a society, that we can learn to lead with the person, not the diagnosis. That we can recognize the humanity in each one of us. The Global Down Syndrome Foundation embodies that vision.”
One of the elements of GLOBAL’s work that Caterina feels most passionate about is the breakthrough research. “GLOBAL’s research arm, the Crnic Institute, published a groundbreaking study on how the overactive immune system in people with Down syndrome is part of a different disease spectrum, which opens up so many opportunities for research,” Caterina explains. “It’s really hard as a parent to make sound medical decisions for your child when the information that your doctor has is often not complete based on the genetic makeup of our kids with Down syndrome. It’s priceless to have the full picture of information.”
Caterina encourages families who are interested in advocacy to read about the important breakthroughs in research on GLOBAL’s website and to join them in their fight for increased federal funding for Down syndrome research.
Pippa Scorsone daugher of Caterina Scorsone (photo by Rebecca Couresy)
“Down syndrome is just one aspect of the deep and multi-faceted human beings that have the condition,” Caterina continues. “I’ve found that the key to being a good parent, and a good person, is in curiosity. Be curious about your children and who they are. Be curious about yourself. Be curious about what scares you. Lead with the search for knowledge and understanding, rather than judgement, and you will be surprised by how much you will continuously learn about the world.”
To learn more about Caterina and to watch her inspiring Quincy Jones Award speech, visit www.bebeautifulbeyourself.org/caterina-scorsone
To access GLOBAL’s informative resources on research and medical care, visit www.globaldownsyndrome.org/about-down-syndrome/resources
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!
Pursuing Your Passions
November 17th, 2020 by Global Down Syndrome Foundation
From Down Syndrome WorldTM 2020 Issue 2 of 4
FROM OWNING A RESTAURANT TO RUNNING A FOUNDATION, TIM HARRIS IS ON A MISSION. THE DEDICATED GO-GETTER FINDS NEW INSPIRATION AFTER MEETING R&B POWER COUPLE SHAMARI & RONNIE DEVOE AT GLOBAL’S FASHION SHOW.
This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!
“IF YOU CAN DREAM IT, YOU CAN DO IT,” Tim Harris, the vibrant 34-year-old from Albuquerque, New Mexico, says with a smile. “That famous Walt Disney quote has led me through my life.”
From the time Tim was a kid, he dreamed of owning a restaurant. After graduating college, he made that dream a reality and opened “Tim’s Place” in 2010. The restaurant served classic American and New Mexican dishes but was more well-known for Tim’s world-famous hugs. Tim became the first person with Down syndrome in the United States to own and operate his own restaurant. The restaurant attracted celebrities like Paul Bettany, Jennifer Connelly, Aloe Blacc, J.R.R. Martin, and Mel Gibson, parents of newborns with Down syndrome, and national media outlets. Tim was also featured in People Magazine, CBS Evening News and CBS Sunday Morning, America Online, ABC News, NBC Today Show, NBC Nightly News, National Public Radio, and CNN News.
After an impressive 75,402 hugs over 5 years, Tim and his family decided to close Tim’s Place. Seeking to expand his impact, he started Tim’s Big Heart Enterprises in 2016, hosting charity events such as the Hug-A-Thon for the local fire department. Now, Tim spends his time traveling the world, advocating for those with Down syndrome, and giving motivational speeches. Tim is also a recipient of the Quincy Jones Exceptional Advocacy Award, the prestigious honor given by the Global Down Syndrome Foundation (GLOBAL).
At GLOBAL’s 2019 Be Beautiful Be Yourself Fashion Show, Tim had the pleasure of watching his girlfriend Megan Bomgaars accept the same award. “Megan asked me to escort her on the red carpet, and it felt awesome having reporters ask us about our advocacy together. I loved it,” Tim explains.
That night at the Fashion Show, Tim met Shamari and Ronnie DeVoe, who are known as a power couple in the music industry. Shamari is a platinum artist and actress, best known for her role on the Real Housewives of Atlanta. Ronnie is also a platinum selling artist, best known for being in the bands New Edition and Bell Biv DeVoe as well as his off-stage career in real estate.
“We learned about GLOBAL and the Be Beautiful Be Yourself Fashion Show from our friends Jamie and DeOndra,” says Shamari. “The Fashion Show was a perfect way to combine our passions for music, helping others, spending time with friends and making new ones
all in one night.”
“Jamie Foxx and his sister DeOndra Dixon are long-time GLOBAL supporters and an iconic sibling duo. Seeing them at GLOBAL events over the years and meeting a successful power couple like Shamari and Ronnie was inspiring,” says Tim. “I thought, hey look at all Megan and I have accomplished on our own, I wonder what we could accomplish together! TiMeg? BomHarris? We’ll need to work on that.”
From a Solo Force to Power Couple
“The most important thing we’ve learned about being a success- ful couple, both professionally and personally, is to be a strong individual in both areas first,” says Ronnie. “Shamari and I developed ourselves and our careers years before even meeting each other. When we met, we combined our talents and became even stronger together.”
Ronnie grew up in Boston, Massachusetts and was always interested in the entertainment industry. In 1980, Ronnie’s uncle Brooke Payne introduced him to the guys in New Edition after they won a chance to record a song with Maurice Starr, a well-known pop and soul music producer. He auditioned to become the 5th member and three years later, they released their first record, Candy Girl. New Edition broke up in 1989. After that, Ronnie, Ricky Bell, and Michael Bivins founded Bell Biv DeVoe. “Their debut album, Poison, sold more than 5 million copies and garnered 5 hit singles including the timeless classic, Poison.” New Edition reunited in 1996 with the #1 album Home Again. Since then, NE and BBD have received all kinds of accolades, lifetime achievement awards, and even produced a record-breaking movie about their journey in the music business. BBD’s most recent album was released in 2017 and the group continues to tour around the world.
Shamari grew up in Atlanta, Georgia and started singing when she was just 3 years old. At 17, she landed her first record deal on the multi-platinum group Blaque, with Lisa Lopes. In 1999, the group won “Best New Artist” by Billboard for their debut album, which sold over one million copies. In addition to her music career, Shamari has appeared in the movies Bring it On and Honey, and TV shows V.I.P. and Bravo TV’s Real Housewives of Atlanta.
In 2001, Ronnie and Shamari met at the after party for the MTV Icon Awards honoring Janet Jackson in Los Angeles. From that day on, they were inseparable. Their involvement in the music industry helped connect them and strengthen their relationship over the years. “We share the same love for traveling and inspiring people through our music and performances,” says Ronnie. The couple was married in 2006, and in 2017, they welcomed twin boys, Ronald and Roman. Ronnie and Shamari began to collaborate on music together and in 2018, they released Love Comes Through, their first song together.
When Tim met Shamari and Ronnie, they got along right away. “They were so fun to be around and easy to talk to,” he remembers. And the feeling was mutual. “Tim is an amazing individual with loads of energy, ambition, and laughter,” says Shamari. “His spirit and personality were infectious. He made us feel right at home. I can see why his restaurant was so successful.”
Tim and Megan had a similar journey of individual growth before they met. Tim attended Eastern New Mexico University and graduated in 2008 with certificates in restaurant management. His restaurant, “Tim’s Place,” became famous for being the “friendliest restaurant” in the country and he was invited to be a keynote speaker for and received awards from dozens of organizations including Keller Williams International, Clay Aikin’s National Inclusion Project, Children’s Miracle Network, The NYC Welcome Conference, National Down Syndrome Congress, Special Olympics International, Kiwanis International, Civitan International , and many more. Additionally, Tim’s foundation has successfully raised thousands of dollars for organizations in his local community.
“Tim brings such joy to everyone around him,” says his mother, Jeannie. “He’s always been a big hugger. He makes everyone feel loved and celebrated.”
“His happy attitude brings him from one adventure to the next,” his father Keith adds. “If one door closes, he won’t spend too long dwelling on it, he’ll just move on to the next thing. And that’s what allows him to accomplish so much.”
Regularly attendees of GLOBAL events, Tim met Megan at one of GLOBAL’s “must-attend” quarterly I Love You Dance Parties, where Megan was being followed by a camera crew for the Emmy-award winning Born this Way. Not intimidated, Tim began to court Megan, they got to know each other as friends, and eventually started dating. But continue to prioritize their careers along the way. After several months of dating, at GLOBAL’s 2019 Fashion Show, Tim made their relationship public and official. “I gave her a special necklace, and she kept it!”
Megan is a businesswoman in her own right. Her student video about inclusive learning environments, where she coined her catch phrase “Don’t Limit Me” went viral in 2013. She was later recruited to be cast on A&E’s Emmy Award winning show Born This Way. Additionally, Megan is an entrepreneur, opening her own clothing line in partnership with Sanrio’s Hello Kitty and “Don’t Limit Me” makeup line in collaboration with Artpop Cosmetics.
“It was so heartwarming to see how supportive and encouraging Megan and Tim are to each other,” says Shamari. “Tim gave Megan her spotlight as the 2019 Quincy Jones Award winner, and Megan was proud to show Tim off.”
When Tim asked Ronnie and Shamari what their biggest lesson as a couple is, Ronnie said, “When we put our mind, focus, and attention on something we are passionate about, it will manifest positive results. And that applies to not only relationships, but just about everything in your life.”
Shamari and Ronnie were eager to hear about Tim’s and Megan’s business endeavors. “They both have such a thirst for advocacy. They want to change the world,” Shamari explains. “And putting their heads and hearts together, I can’t wait to see how they grow.”
WHEN STARS SHINE
“Our first GLOBAL Fashion Show was beyond amazing, an A+ operation all around. Michelle, Sophia, the Sie family, and the GLOBAL staff were all so accommodating and gracious,” says Ronnie. “It was truly moving to see how much they care and how dedicated they are to making sure that people with Down syndrome get a voice and their fair share of research funding.”
Shamari and Ronnie walked down the GLOBAL runway with Piper and Jacob. “Piper was such a princess. She was quiet, but observant. And she had the most beautiful smile!” Shamari tells. “And Jacob had so much energy and excitement for life. He was a ball of joy wrapped up in a tiny package full of love!”
“Once they gave us the greenlight to go, both Piper and Jacob exploded down the runway like they owned the place,” Ronnie adds. They loved it so much, they are attending as celebrity guests again this year for the virtual event!
“I was happy just watching Megan do her thing from the audience,” says Tim. “I remember what it was like being on that stage 6 years ago accepting my award, and this was her turn. We’re each other’s rock.”
“Getting the Q-Award at GLOBAL’s Fashion Show was one of the biggest honors of my life,” said Megan, “It felt amazing to be recognized for my work on such a large scale and have my mom and boyfriend there supporting me. Seeing all 1,400 people in the room learning about Down syndrome and raising more money for research with Michelle was a dream come true and I would want to do it again.”
The event ended with an impromptu after-party concert led by Jamie Foxx. Later, Ronnie joined in and the two sang together. “Jamie saw me, nodded to the DJ, and we sang a few Bell Biv DeVoe/New Edition songs together,” Ronnie tells. “It was a great crowd, with so much enthusiasm and energy. It felt so organic. And I remember Megan Bomgaars dancing and singing harder and better than Jamie and myself combined!”
“GLOBAL’s Fashion Show is always full of exciting and unforgettable moments, and in my 11 years running this event, that after-party show has to be one of my favorites memories of all time!” says Michelle Sie Whitten, GLOBAL President and CEO. “Our celebrities and self-advocates danced and sung their hearts out, and everyone let loose.”
GIVING BACK
“It’s only right that we assist one another and continue to serve our purpose in life, which is to use our gifts, talents, resources, influence, time and energy to be a blessing to others,” says Ronnie. “Considering Down syndrome is the one of the least funded genetic condition by our federal government, the money raised at this event is necessary for research andoverall understanding.”
“Without Michelle and her team, who knows where we would be in the fight to help the lives of men, women, and children with Down syndrome,” Shamari adds.
This year, due to the unprecedented COVID-19 pandemic, GLOBAL has shifted priorities to best provide for the Down syndrome community. “Unfortunately, our Down syndrome community is high-risk for COVID-19, so we’ve done everything we can to serve our families, including creating a Down syndrome/COVID-19 Q&A, advocating for important legislation, and providing emergency relief grants to over 140 families and 42 member organizations,” says Michelle.
GLOBAL has had to cancel or postpone many fundraising events and is facing financial challenges. For GLOBAL’s 2020 Be Beautiful Be Yourself Fashion Show, the event will go virtual for the first time. Fortunately, celebrities including Jamie Foxx, DeOndra Dixon, Shamari and Ronnie DeVoe, Tim Harris and Megan Bomgaars will be showing up in full force to support GLOBAL’s important work.
“I can’t wait to reconnect with my friends Shamari and Ronnie this year, even if it is virtual!” Tim exclaims. “I’ve seen them rock a place, and I’m sure they’ll do it again. But the real question is, are they ready for what I have in store?”
To learn more about GLOBAL’s Be Beautiful Be Yourself Fashion Show, visit www.bebeautifulbeyourself.org
To learn more about Tim’s Foundation, visit www.timsbigheartenterprises.com
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!
A Loving Tribute to DeOndra Dixon
October 24th, 2020 by Global Down Syndrome Foundation
GLOBAL’s 2020 virtual Be Beautiful Be Yourself Fashion Show ended with a loving tribute to GLOBAL Ambassador DeOndra Dixon and brought us all to tears. GLOBAL and DeOndra’s family have set up the “DeOndra Dixon Down Syndrome Research Fund” to focus on the often neglected population of African Americans with Down syndrome. Anna and John J. Sie are generously matching $100K for this important research. DeOndra’s legacy will power us on. ALWAYS LOVED NEVER FORGOTTEN.
With the heaviest of hearts and full of sorrow, we are beyond sad that our beloved Global Ambassador DeOndra Dixon has passed. She is no doubt a true angel looking down on us, just as she was always an angel on earth.
The Global Down Syndrome Foundation’s highest honor, the Quincy Jones Exceptional Advocacy Award, was inspired by DeOndra and she was its first recipient. Quincy Jones himself introduced us to DeOndra as one of the most articulate, irrepressible, magnetic people he had ever met. DeOndra was brought into this world in a loving family who treated her like any other family member. They gave her the gifts of complete acceptance, confidence, and knowledge. They empowered her to graduate with a regular diploma from high school and to take life by storm, which, if you knew DeOndra, she absolutely did. Her parents, Annette and George Dixon, brother Jamie Foxx, sister Deidra Dixon, nieces Anelise and Corinne, dear friend Kim, and large extended family are beyond consolable, and we ask that you help us respect their privacy during this difficult time.
For Global, we have lost our talented, intelligent, feisty, beautiful, kind, loving, caring, pure and giving heart, DeOndra Dixon. Our Down syndrome community has lost a beacon of hope, a true leader, and role model whose aim was to always help others. She was a bright light in this world of ours.
DeOndra was our anchor. Her excitement for our Be Beautiful Be Yourself Fashion Show each year was palpable, and she often posted about her “secret moves” that she was practicing (and she did keep them secret right up until her stage call).
Over the years our fashion show became a reunion for Global’s “extended Down syndrome family” where DeOndra and her family, Quincy Jones, John C. McGinley, Amanda Booth, Beverly Johnson, Kyra Phillips & John Roberts, Ronnie & Shamari DeVoe, Matt Dillon, The Salah Foundation, Peter Kudla, Jules Haimovitz, Tomago Collins, Jay Mills, the Gold/Rest/Karsh/Perry, Vollbracht/Winfield, Capuano, Rotella, Sikora, Levin, Fonfara-LaRose, and Snodgrass families, our families, our tribes would come together over a weekend and celebrate life and people with Down syndrome.
Our extended family loves DeOndra deeply and unreservedly for who she is. Global and DeOndra’s family cannot imagine our fashion show without her, and so through our heartbreak and tears, we were able to honor her memory at our Be Beautiful Be Yourself Fashion Show with a loving tribute video and announce the “DeOndra Dixon Down Syndrome Research Fund” set up in conjunction with DeOndra’s family. The fund will focus on research to address the disparity of lifespan for African Americans with Down syndrome and will be matched up to $100,000 by a generous donation from Anna and John J. Sie.
Everyone at the Global Down Syndrome Foundation is in complete shock and full of grief. Please join us in honoring her and share your fondest memories of our beautiful and brilliant DeOndra Dixon. DeOndra is already sorely missed, but she will never be forgotten.
The Peanut Butter Falcon: A Must-See Indie Film Starring Zack Gottsagen
May 19th, 2019 by Global Down Syndrome Foundation
Featured: Dakota Johnson, Zack Gottsagen, and his mothers, Shelley and Trish, and Shia LaBeouf at Global’s Be Beautiful Be Yourself Fashion Show. Photos: Jared Wilson
From Down Syndrome WorldTM Issue 1 2019
Film wins Audience Award at the prestigious South By Southwest (SXSW) Film Festival, and audiences fall in love with Global Down Syndrome Foundation’s Q-Award winner. The key to the movie’s success? Friendship.
ZACK GOTTSAGEN IS NO STRANGER to the spotlight — in fact, he dances right into it. Last year, Gottsagen received the Global Down Syndrome Foundation Quincy Jones Exceptional Advocacy Award. After giving a powerful acceptance speech, he literally threw off his jacket and unexpectedly danced down the runway, charming a crowd of over 1,400 guests at Global’s 10th Anniversary Be Beautiful Be Yourself Fashion Show.
The accomplished actor, who is 33 years old and happens to have Down syndrome, stars alongside Shia LaBeouf and Dakota Johnson in a new feature-length indie film called The Peanut Butter Falcon. Gottsagen’s breakout role and the film were praised by Variety magazine’s review: “… there’s something so guileless and genuine about Zak (qualities that stem directly from the actor playing him) that he manages to win over both his newfound friend and the audience in the same coup.”
The review goes on to focus on the relationship between LaBeouf’s and Gottsagen’s characters. “… Both [their acting] approaches result in a kind of spontaneous unpredictability, making the characters’ choices feel constantly surprising.” Definitely two thumbs-up!
The Peanut Butter Falcon tells the story of a young man with Down syndrome, Zak (Gottsagen), who escapes from the nursing home where he pines to follow his dream of becoming a professional wrestler. Along the way, he meets Tyler (LaBeouf), a troubled traveler with a mysterious past, and Eleanor (Johnson) who is sent from the nursing home with orders to return Zak to the facility. The film also includes award-winning actors Thomas Haden Church, who plays a retired wrestler, and Bruce Dern, Zak’s roommate who helps him escape from the nursing home.
In March, Gottsagen and LaBeouf promoted the film together at the prestigious SXSW Film Festival in Austin, Texas, where The Peanut Butter Falcon won the “Narrative Spotlight” Audience Award.
The filmmakers are hoping to land a distribution deal and release by summer of 2019.
The Peanut Butter Falcon crew at the 2019 SXSW Film Festival. Global’s Q-Award winners Colin Farrell and Zack Gottsagen strike a pose with Gottsagen’s moms, Shelley and Trish.
DESTINED TO BE AN ACTOR
Gottsagen was born with an irresistible charm and drive to change the world. Just ask his mom Shelley Gottsagen.
“Zack has this ability to connect with people from all walks of life,” she says. “He has a real compassion and love for people.”
He was also born with the rare vigor and determination necessary to succeed in the entertainment business.
“Zack tells everyone he meets about his passion for acting , which landed him a lead role in a feature film,” she adds.
“I have wanted to be an actor since I was 3 years old,” Zack says. “I want to show people that no matter who you are, if you follow your heart, you can do whatever you want with your life.”
It was this charisma and determination that led to Gottsagen being cast as one of the first actors with Down syndrome to star as the lead in a full-length feature film. Co-writers and directors, Tyler Nilson and Michael Schwartz, explained their inspiration to write The Peanut Butter Falcon.
“Zack told Michael and me that we should write a movie for him to star in,” Nilson says. “We thought it was genius!”
Nilson and Schwartz had worked with Gottsagan on other short films at Zeno Mountain Farm, a nonprofit that hosts inclusive camps in Vermont, California, and Florida for people of all abilities . They were taken not only by his acting ability but his uncanny sense of timing and skill at reading others. But how to capture that on screen?
Schwartz continues, “Being friends with Zack for many years, we tried to create the most authentic experience we could for our audience by writing a character that is really tailored to Zack and his strengths.”
Gottsagen’s character in The Peanut Butter Falcon, “Zak,” is consistent with Zack the actor in elements such as his love of wrestling and caring, determined spirit.
The result is truly a must-see movie. Variety likened it to indie great Little Miss Sunshine and blockbuster hit Forrest Gump, calling it “a feel-good niche indie with its priorities in the right place.”
GOTTSAGEN, LABEOUF, & JOHNSON ON-SCREEN CHEMISTRY
This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door! A huge part of any movie’s success is the on-screen chemistry of its actors. The Peanut Butter Falcon has this in spades because the actors became very close while filming. And they have remained close — supporting each other at award ceremonies and keeping in touch frequently through text messages and phone calls.
The bonding happened remarkably fast. Once Nilson and Schwartz finalized the script, the crew had only 30 days to film on the isolated beaches of Savannah, Georgia. Being together every day for a month and working through late hours of the night, the cast truly became a family. Every morning before they started shooting, Gottsagan would give the team a pep talk.
Gottsagen’s mom, Shelley, recalls, “He would call out certain members of the group and thank them for what they did that day. It really gave everyone that extra boost of confidence and created a sense of community.”
For LaBeouf and Gottsagen, their relationship began before the two ever met.
“I saw a video of Zack and thought it would be incredible to work with him. I fell in love with him before I even met him,” LaBeouf explains.
LaBeouf, Johnson, and Gottsagen would eat lunch together every day during filming. Gottsagen consistently ate only chicken. Johnson even named her rescue cat “Chicken” because she said it would make her think of Gottsagan when she was home. While LaBeouf and Gottsagen would watch wrestling together every Monday and Tuesday, Johnson would get mani/pedis with Gottsagen once a week.
“When I met Zack just before we started filming The Peanut Butter Falcon, I was totally bewildered by his purity of heart,” Johnson explains. “He is extremely intelligent, kind, charming, hilarious, and deeply empathetic. He’s the most loving and embracing person I’ve ever met in my life.”
IMPROV GOLD
It was important to the film’s stylistic integrity to keep everything as realistic as possible.
“Zack insisted that he do all of his own stunts,” Shelley recalls. “I couldn’t believe that he jumped off the wooden bridge into the water or that he grabbed a fish with his bare hand! But he wanted it to be real.” She explained how this process wouldn’t have been possible without Nilson and Schwartz’s imaginative vision.
“They allowed Zack to have creative control with his scenes, which really made a difference in bringing his character to life.”
“Often, what Zack and Shia came up with was even better than what was on the page,” Nilson says. “Some of the funniest lines and bits in the film, I have to admit, actually come from Zack’s improv!”
Schwartz adds, “With Zack and Shia, we created a space for them to actually live the scenes.”
LaBeouf confirms how special the interaction was. “When Zack and I met, we would just start riffing with each other [while filming],” he says. “Everywhere it went, we’d wind up with gold. We had really deep conversations that I could only have with Zack.”
Gottsagen agrees. “We practiced our lines, but we were able to make it real, and that’s what it’s all about.”
During red carpet interviews at SXSW, the whole cast and crew spoke to the understanding, patience, and appreciation they developed for people with Down syndrome by working with and learning from Gottsagen.
Schwartz summed it up. “There’s a magic that Zack brings to every scene. With him, he’s not just saying his lines, he’s actually feeling the moment.”
AN IMPORTANT ROLE MODEL, AN IMPORTANT FILM
Gottsagen caught Global’s attention when a Global Ambassador, Chase Turner Perry, identified a family connection to a producer of The Peanut Butter Falcon.
“We were actually a little nervous as we can’t support a film, even a great film, if the messaging is counter to our advocacy work,” says Michelle Sie Whitten, President and CEO of Global. “So we organized a screening in Denver last May, and I was blown away by how excellent the film is, how it pulls you in, and how the film makes important societal statements that the Down syndrome community would be proud of.”
After spending a good amount of time with Gottsagen, Whitten and her team made the decision to honor Gottsagen with Global’s 2018 Quincy Jones Exceptional Advocacy Award at their 10th Anniversary Be Beautiful Be Yourself Fashion Show, the largest fundraiser for people with Down syndrome in the world.
“Zack is a role model and inspiration not just for people with Down syndrome, but for all of us,” says Whitten.
To Whitten’s surprise, The Peanut Butter Falcon family immediately rallied, and LaBeouf, Johnson, Nilson, Schwartz, and other crew members descended upon Denver to support Gottsagen. LaBeouf and Johnson both introduced Gottsagen and helped bestow the Global award.
Now Global is part of the family supporting Gottsagen and traveled to Austin to cover him and The Peanut Butter Falcon at SXSW. Johnson was not able to attend but sent her best wishes to Gottsagen via text. LaBeouf and Gottsagen walked the red carpet together, laughing, joking, and posing for photos.
During the screening, the audience laughed and cried. When the credits started to roll, there was a standing ovation. At the end of the Q&A that followed, Gottsagen took the microphone.
“I make Shia’s life better every day,” he told the SXSW audience. LaBeouf laughed and nodded in agreement. The sincere and unique friendship, both on and off the screen, is undeniable.
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Hallmark’s “Home & Family” interviews Ambassador DeOndra Dixon & Global’s Michelle Sie Whitten
January 16th, 2018 by Global Down Syndrome Foundation
GLOBAL’s Dare to Play Tennis Aces It
November 2nd, 2017 by Global Down Syndrome Foundation
Former No. 1 Seed And Eight-Time Grand Slam® Winner Mats Wilander Has A Special Bond With The Participants At The Global Down Syndrome Foundation’s Dare To Play Tennis Camp In Denver.
This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!
With the Help of The Daniels Fund, the University of Denver, and other generous donors, GLOBAL was able to establish the Dare to Play Tennis Camp in 2016. The camp is part of GLOBAL’s health and wellness efforts that link love of sport to better overall health.
The camp is co-organized by the Gates Tennis Center, where eight coaches are trained by GLOBAL staff. Training includes people-first language, consistency of tennis terms, and appropriate physical boundaries (e.g. circles of relationships).
“The participants have a ball, no pun intended!” said Michelle Sie Whitten, President and CEO of GLOBAL. “They are eager to get to the front of the line and hit that forehand or backhand, and you can see the amazing progress.”
POINTERS FROM PROS
When it comes to tennis, few players have a resume quite as impressive as Wilander’s — a resume that includes eight Grand Slam® championships and 739 matches won. Born and raised in Sweden, Wilander learned to play tennis on a parking lot that had been converted into a tennis court. By 1982, when he was just 17 years old, Wilander became the youngest male tennis player at the time to win the French Open. He went on to win five major singles championships by age 20, and by 1988, he was ranked No. 1 in the world.
After largely retiring as a competitive athlete in 1997, Wilander coached Sweden’s Davis Cup team, which he belonged to from 1981 to 1990. In 2002, he was inducted into the International Tennis Hall of Fame.
Nowadays, he runs a program called Wilander On Wheels (WOW) with Cameron Lickle, who was ranked No. 1 on the U.S. Naval Academy’s tennis team and served as its captain in 2002 and 2003. The pair travels around the United States providing clinics and lessons for tennis enthusiasts.
Wilander and Lickle usually work with very advanced players, but they were attracted to the idea of teaching participants who are differently-abled and, in the end, became inspired supporters themselves.
“All someone has to do is to spend one minute with one person with Down syndrome to understand how simply wonderful they are!” Wilander said. “It is terrible to think that there is discrimination against this population in research, medical care, and education. Whatever we can do to help the cause, we here at WOW are in!”
FAMILIAR TERRITORY
Wilander knows personally that children who need modifications can live happy, fulfilling lives. His son, Erik, has a r are genetic connective tissue disorder called Epidermolysis Bullosa (EB). Affecting just one out of every 20,000 births in the United States, EB leads to fragile skin that blisters and tears from minor friction or trauma.
To help his son, Wilander and his wife, Sonya, decided to move their family of six from Connecticut to Sun Valley, Idaho, where the altitude and lack of humidity helps keep Erik’s skin from blistering. As a result, Erik has been able to ski, golf, and camp, just as typical teenagers do.
Wilander established the MW Foundation (wilanderonwheels.com/foundation) to bring attention to EB, but he also uses the foundation as a platform for raising awareness about issues affecting people with a variety of conditions.
“Down syndrome is much more frequent than EB, but it appears the community still has the har dest battle to fight when so man y people are unaware of the terrible disparity of funding for Down syndrome research,” he said. “We are grateful for everything GLOBAL does and for allowing us to help bring awareness to this important cause.”
HAVING A BALL
Dare to Play Tennis lasts for six weeks, and participants of all ages attend twice a week. The camp ends with an Exhibition D ay match where campers put everything they’ve learned to use, playing against each other as well as Wilander and Lickle.
While learning valuable skills is certainly a benefit, the camp is also about having fun. Few can attest to that quite like Lillian, a 32-year-old self-advocate from Denver who has attended for the past two years and has a special bond with Wilander.
“Tennis is a good exercise,” Lillian said in her husky commanding voice. “It takes a lot of mental focus and physical energy. I like to participate in Dare to Play Tennis to have fun and work on my game.”
Lillian explains how she even managed to get the better of Wilander a time or two.
“It was great,” Lillian said. “I surprised Mats with my strategies by attacking his left hand.”
Kept on his toes by the campers, Wilander enjoys his time on the courts as much as they do.
“I participate in a lot of events . I attend Wimbledon, the US Open, and many other exciting events, but being part of GLOBAL’s camp and sharing tennis with these campers is truly one of the biggest highlights of my year,” Wilander said. “All the participants in GLOBAL’s Dare to Play Tennis Camp clearly love all of their fellow campers and coaches and have such a robust engagement with life. If everyone shared their same zest for life, what a better, different world we might live in!”
MORE ALIKE THAN DIFFERENT
“Working with professionals like [Mats] Wilander and [Cameron] Lickle are definitely a perk of being on staff at GLOBAL,” said Evan Winebarger, Senior Manager of Health & Wellness Programs at the Global Down Syndrome Foundation. “Not just because they are celebrities, but because they are amazing people who truly get it and allow the focus to be our participants.”
The admiration is clearly mutual.
“GLOBAL is an organization doing great things with great leadership who are passionate about their cause,” Wilander said after his exhibition match. “All of us are one chromosome or DNA strand away from being differently-abled. It is important to remember that.”
“I participate in a lot of events. I attend Wimbledon, the US Open, and many other exciting events, but being part of GLOBAL’s camp and sharing tennis with these campers is truly one of the biggest highlights of my year!” — Mats Wilander, eight-time Grand Slam® champion, former world No. 1 tennis player, and instructor at Global’s Dare to Play
This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read the whole magazine and get future magazines delivered to your door!
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!
Eva Longoria, Jamie Foxx, Quincy Jones, Madeline Stuart and Amanda Booth Join Forces With Global Down Syndrome Foundation and its Impressive Fashion Show Celebrity Lineup
October 24th, 2017 by Global Down Syndrome Foundation
During Down Syndrome Awareness Month celebrities vow to raise awareness for life-changing research in support of the foundation’s annual fundraiser next month in Denver
DENVER – Today the Global Down Syndrome Foundation announced its full celebrity lineup for this year’s 9th annual Be Beautiful Be Yourself Fashion Show, as well as its Quincy Jones Exceptional Advocacy Award (Q Award) winners. The fashion show is the single largest fundraiser benefiting people with Down syndrome, and will be held on Saturday, Nov. 11, 2017 at the Sheraton Denver Downtown Hotel, 1550 Court Place in Denver.
Models – including Marcus Sikora, 2017 Global Ambassador, Madeline Stuart, Australian Model and 2017 Q Award Winner, and DeOndra Dixon, past Global Ambassador and Q Award Winner – will be joined on the Be Beautiful Be Yourself Fashion Show runway by celebrities including: Eva Longoria, Award-winning Actress, Producer, Director, Entrepreneur and 2017 Q Award winner; Jamie Foxx, Oscar Winning Actor, Grammy Winning Musician, and Comedian; Quincy Jones, 27-time Grammy Award Winning Musician, Music Icon, Entertainment Mogul, Entrepreneur and Humanitarian; Marisa Tomei, Oscar Winning Actress; Joe Manganiello, Star of True Blood and Magic Mike; Denis O’Hare, Tony Award Winning Actor and Star of True Blood; John C. McGinley, Award-winning Actor, and Global Board Member; and Amanda Booth, Actress and Model.
“This is a special year for Global as we have had two major scientific breakthroughs that are a direct result of the donations we have raised at our fashion show in past years,” said Global Down Syndrome Foundation President, CEO and Co-Founder, Michelle Sie Whitten. “We are thrilled and grateful for our celebrity supporters this year, but we are especially proud to have Quincy Jones attend to support Global and present his namesake award. It’s going to be a special evening for everyone who attends and donates their time, talent and treasure as they are the people helping us change the world for good.”
Over the past 8 years, the Be Beautiful Be Yourself Fashion Show has raised more than $14 million for the Global Down Syndrome Foundation to support life-changing and life-saving research, medical care, education and advocacy. Specifically, the foundation has supported world-class multi-disciplinary medical care to more than 1,300 children with Down syndrome from 28 states and seven countries. The funding has also helped to establish the first academic home for revolutionary Down syndrome research, with a focus on Alzheimer’s disease, cancer and autoimmune disorders.
Various levels of tickets, table sponsorships, and model sponsorships are available, including VIP levels at www.bebeautifulbeyourself.org.
Game On – With Super Bowl Champion Ed McCaffrey
September 1st, 2017 by Global Down Syndrome Foundation
Taking the field is a momentous, confidence-building event for any young athlete. Super bowl champion and former Denver Broncos wide receiver Ed McCaffrey is dedicated to ensuring children and young adults with down syndrome don’t miss out.
This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!
When Global Down Syndrome Foundation President and CEO Michelle Sie Whitten first met McCaffrey, there must have been an electric force field around them. The two high-energy, get-thingsdone people started discussing their passion for equality and fighting discrimination. The conversation turned to making Colorado the best place for people with Down syndrome to live and resulted in Global establishing the Dare to Play Football Camp with Ed McCaffrey as its featured coach.
“I’ve played football my whole life, and I’ve been coaching camps for 10 years,” McCaffrey said. “When I found out from Michelle that there aren’t many opportunities for kids with Down syndrome to play team sports, specifically football, we got together and decided, ‘Let’s make a football camp for them.’ They’re having fun, they’re making friends — they’re playing football for the same reasons we all started playing football.”
LEARNING FROM A LEGEND
Global’s Dare to Play Football Camp lets participants learn from the best, including McCaffrey, who’s no ordinary instructor. The 13-season NFL all-star has played with the New York Giants, San Francisco 49ers, and Denver Broncos. A three-time Super Bowl champion, McCaffrey is one of only 31 NFL pla yers to win a Super Bowl with two different teams. He’s been a cornerstone of Global’s Dare to Play Football Camp every year since it started in 2010.
“I look forward to it every year,” McCaffrey said.
“What a blessing. Global organizes such a great opportunity for so many individuals with Down syndrome to play the great game of football, while also spreading awareness in the community about all the wonderful things individuals with Down syndrome can do. We’re working to dispel a lot of negative stereotypes.”
Each year, the camp attracts other professional volunteer coaches. In addition to McCaffrey, the star studded 2017 roster included Brandon Stokley, Tyler Polumbus, Shaquil Barrett, and Todd Davis, who have eight Super Bowl rings between them. Past pros include Ben Garland, Danny Trevathan, Chris Kuper, Britton Colquitt, Orlando Franklin, Malik Jackson, Ben Hamilton, Jack Del Rio, Brian Dawkins, and Joel Dreessen, who had nothing but praise for McCaffrey’s coaching and their experience at the event. “I’m blown away by it,” Dreessen told The Denver Post. “Ed McCaffrey was one of my heroes growing up, too. I always wanted to be just like him. So, to see him have his hand in something that gives back like this, it gives me more reason to really like it.” Global’s Dare to Play Football Camp is held at Valor Christian High School in Highlands Ranch, Colorado, and each participant is paired with a high school football player, or “Pal,” for camp practices and the big game day. The Denver Broncos Cheerleaders are equally important partners for Global’s Dare to Cheer Program, which runs simultaneously with the football camp.
The big game day has a dramatic opening, with the Denver Broncos Thunderstorm skydivers landing on the field, and it goes on to feature two scrimmages, lots of cheerleading, cheering from hundreds of fans, and the Denver Broncos mascot, Miles.
“It’s the smiles on the campers’ faces when they catch a ball or score a touchdown,” McCaffrey said, when asked about his favorite moments from the camps. “When they pick their teammate up who has fallen down, when they show compassion and joy and enthusiasm, it’s just that look that you see from them.”
“Ed makes fun of me because I don’t know a lot about football or who the celebrity coaches are,” Whitten said. “But it is obvious even to me what an impact this has on our self-advocates . The one thing that took me aback w as several of the fathers in par ticular getting teary eyed because they thought their sons with Down syndrome would never play football. I’m so glad w e turned that stereotype on its head!”
LET’S HEAR IT FOR THE TEAM!
Studies have shown that physical activity builds self-esteem and boosts feelings of well-being, and so do connections.
“My favorite part is the practice time with my buddies and Pal and the game day,” said self-advocate Ben.
“I truly enjoyed helping coach the campers and getting to know them,” said Tanner, a Valor Christian Pal. “It was an amazing experience — one I will never forget. I can’t wait for next year!”
Twenty-one-year-old Maya, who has attended every Global Dare to Cheer Camp since 2010, is another shining example of the confidence physical activity offers. “My favorite part is the football team!” she shared. “What I like most about Dare to Cheer is my friends. My favorite cheer is ‘Blue and White, Fight Team Fight’.”
When asked who her favorite Bronco is, there was no hesitation. “Ed McCaffrey!”
ALL IN THE FAMILY
For Ed McCaffrey, sports and giving back is a family affair. His wife, Lisa, was a soccer star at Stanford University, and their four sons are following in dad’s footsteps. Max is a wide receiver for the Green Bay Packers. This fall, Christian began his first season with the Carolina Panthers, and Dylan began playing in the Big 10 as a University of Michigan Wolverine. Luke, the youngest, still plays quarterback, receiver, and defensive back for Valor Christian but has received scholarship offers from eight college football heavyweights, including Michigan, where his brother plays, and The Ohio State University.
The four siblings have been Pals for Global’s football camps every year, and last year, Christian flew back from Stanford to help coach. Christian shared with ESPN and Down Syndrome World™ magazine how the camp has enriched his life and helped him create a lifelong friendship with camper Dusty, who happens to have Down syndrome (these stories are available at globaldownsyndrome.org/daretoplaymccaffrey). The key with the McCaffreys is that they don’t treat people with Down syndrome any differently, and they believe deeply in Ed McCaffrey’s wisdom.
“Kids with Down syndrome want to play sports for the same reasons everyone else does,” he said. “They want to have fun, they want to make friends, and they want to be part of a team.
A VEHICLE FOR OUTREACH
Global Down Syndrome Foundation’s Health and Wellness Programs include the Dare to Play Football Camps, the Dare to Cheer Camps, the Be Beautiful Be Yourself Dance Class, the Dare to Play Soccer Camp, and the Dare to Play Tennis Camp. Nearly 50 percent of the participants are on full or partial scholarships. The programs provide a great sports experience and allow Global an opportunity to provide information about life-changing medical care and research and connect families with resources. Nearly 100 percent of children and young adults involved in Global’s Health and Wellness Programs have received medical services at Global’s affiliate, the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.
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!
A Global Bromance: J.R. Smith and Brad Hennefer
September 15th, 2016 by Global Down Syndrome Foundation
NBA Champion J.R. Smith and Global awardee Brad Hennefer’s longtime friendship is detailed in the Fall issue of Down Syndrome World™ magazine. The two athletes share how they inspire each other and how the public’s view of them isn’t always the most accurate.
Empire Star Donates Chicago Set Visit to Support Global
February 15th, 2016 by Global Down Syndrome Foundation
Inspired by the joyful and giving atmosphere of Global Down Syndrome Foundation’s Be Beautiful Be Yourself Fashion Show, Terrence Howard made a generous and spontaneous donation to the live auction of a visit to the Chicago set of his hit FOX show, Empire. Mr. Howard attended the event as a celebrity escort for DeOndra Dixon, Jamie Foxx’s sister and former Quincy Jones Exceptional Advocacy Award recipient.
The lucky winning bidder, Joe Lembeck, graciously gave the visit to his friend Staci Mantegazza and her daughter. The women enjoyed an incredible day on location in Chicago, and raved about their “once in a lifetime experience” saying, “It was awesome!” The women were given a bag of Empire gifts and were thrilled and surprised to be cast as extras in an episode of season 3.
Last year’s fashion show garnered a record-breaking $2 million in donations to support Global’s initiatives of research, medical care, education and advocacy for people with Down syndrome.
Join us this year on November 12th at the 2016 Be Beautiful Be Yourself fashion show in Denver, Colorado and help Global set a new record!
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