Watching the movie Hidden Figures inspired Sophie Slack and she was thrilled to meet her hero, Katherine Johnson, in person at the unveiling of a statue honoring this famous mathematician on her 100th birthday.
This was a moment Sophie hasn’t forgotten.
Though Katherine has since passed away, ever since that time, Sophie has visited the statue when exciting things happen. Sophie’s Dad, Steve explains, “It’s where she goes to be inspired.” Pictured above, Sophie brought with her the trophy she received for participation from her robotics team to proudly showcase.
Sam met Sophie, the oldest of three siblings, via FaceTime, and enjoyed talking about her many interests. Sam came away inspired to try some new things! When Sam asked Sophie about her faith, he also found out that in addition to all her other awards and achievements, Sophie was the first person with Down syndrome to be confirmed as a member of her Presbyterian church! Read on to find out what Down syndrome means to Sophie, and where she’s like to go to college:
What’s your favorite subject at school? “Math.”
How did you get interested in robotics? “My friends invited me to an open house.”
What kinds of things do you do with the team? “A ball thrower. Holder for the battery. Helped with coding.”
What has robotics taught you? “It has taught me how to work with others and to believe in myself. “
Do you have any dreams for what you’d like to do someday with robotics? “I’d like to run my Sophie’s Salads, and work on robots that will help me water my garden.” (Sophie has her own garden that she plants, weeds, and waters and she would like to pickle and sell some of the things she grows at local Farmer’s Markets. She plans to call her business, Sophie’s Salads.)
In addition to robotics, what are some of your favorite activities? “Art. Oragami. Legos. Gardening. Painting and visiting.” (Sophie has been to the Met and the MoMA -- Museum of Modern Art in NYC--and she likes to go hiking with her twin 15-year-old brothers, Sawyer and Samuel. They make a game of identifying trees, and her Dad says Sophie always wins!)
Who is your favorite artist? (Gustav) “Klimt, ‘Woman in Gold.’”
What does Down syndrome mean to you? “It means I am unique.”
Tell us about your happiest moment. “Getting Bow (her cat). She’s a good girl. She’s 10.”
What are some of your dreams for the future? “Go to college. Going to nationals with my robotics team.” (They almost made it in 2022!)
Where do you want to go to college? “WVU.” (Sophie’s dad was one of the founders the “Country Roads Program” at WVU, which has both two- and four-year programs for people with special needs!)
We can’t wait to hear all about what’s next, Sophie!
When we first met John Cronin and his dad, Mark, at the kick-off of the NDSS Buddy Walk in Times Square (and saw John’s picture on the big screen), we knew about John’s Crazy Socks, but didn’t know all the ways they’ve been using fun socks to build bridges.
Last March, they met with Congressman Andrew Garbarino (R-NYS) and Congressman Tom Suozzi (D-NY3) to announce their plans to give President Biden and every member of Congress a pair of your Unity Socks, to celebrate unity in purpose and belief in the ideal of the United States of America.
They’ve also met with Nancy Pelosi, who gave a pair of their socks to former President George H.W. Bush. Wowed by all their grand plans, Sam still had to ask John, ‘Which are YOUR favorite socks?’”
John’s response? “My Down syndrome superhero socks. I drew the picture. I am a superhero sock man.”
If you get a chance to sit down with John and Mark, you’ll understand better the superhero part. From the beginning, the company pledged not only to hire people with differing abilities, but to give 5 percent back to Special Olympics—to the tune of over $100,000 today!
Sam’s next question? We love that you give back to Special Olympics! Tell us more about your involvement. “I am a member of the Leadership Council for New York Special Olympics. I go to the athlete leadership conference and to the state games and meets. If you win, you might win an award. No matter what place you are in, you can be in first, second, or third, I always look everyone in the eyes, and I shake their hands, and I say good game, good job, congratulations, because that’s what matters. Sportsmanship is very important to Special Olympics, and when you have that you know you are a leader and that you make a difference, and I feel really good about it. Let me win, but if I cannot win, let me be brave in the attempt.”
What are your dreams for the future? “I dream about socks. I really want to do more speaking engagements, more advocacy, and create more jobs, and I hire people with differing abilities. Also, I want to get my own place.”
What do you love about having your own business? “I really like doing videos. I like working with my colleague, Kristie. I do a lot of videos, and sometimes I sign socks, I like to do I like speaking engagements, home deliveries, podcasts, and interviews. I help with gift wrapping. When customers order socks, and they order gift wrapping, my colleagues and I wrap in gift boxes and gift bags. I make sure the order is right.”
Is there anything that you don’t like about having your own business? “I don’t like finance—I don’t want to worry about finance.” Mark elaborates that in 2018, they had five weeks in a row where they didn’t get a day off. In one day, for instance, they were on Capitol Hill in the morning, gave an award to Senator Chuck Schumer at noon, and then spoke at a fundraising event for a social service agency. That day in the cab, John turned to his dad and said, “I think this is too much—all the planes and trains. It’s just too much.” Mark was worried that maybe they should cut back, but when he questioned John further, he found out that he was primarily concerned that they were spending too much money. Once Mark explained that others covered most of their expenses, John said, “We should do more of this.”
It sounds like you like to travel? “Every time I go somewhere, I say I want to live there.” (It doesn’t matter where, says Mark—it could be Utica NY, Omaha, Wausau, WI.)
Outside of work, what else is important about you? “Outside of work, I am a special Olympics athlete—I do basketball, track and field, soccer, and snowshoe. I love to sing and dance with my friends.” (Dad says, “Every day at 4 p.m., if John doesn’t have something else, he specifically has to do, he goes outside and dances and sings.) My favorite tv show is 'Friends.’ I have Friends pajamas, pillows, blankets, socks, hats, and mugs. “And I’m getting the orange couch.”
Who are some of the other famous people you’ve gotten to meet? “I met Kevin James, he’s a movie star and he was doing standup comedy and I have been friends with him. I told him about my burp snart (He did it in a movie.), so I told him, ‘Watch I can do it too!’”
When we saw you in Times Square, you mentioned you were thinking about franchises? “We have our planning day for next year on Thursday,” says John, and Mark adds they hope to enroll the first people by next October, and to give 1,000 people a business over the next five years!”
Do you have any advice for other people who want to start a business? “Follow your heart, follow your dreams, work hard, and show what you can do.”
To learn more about John and Mark, you can watch their Tedx talk on differing abilities here:
https://www.ted.com/talks/john_lee_cronin_mark_x_cronin_people_with_differing_abilities_don_t_need_our_help_as_much_as_we_need_theirs?utm_campaign=tedspread&utm_medium=referral&utm_source=tedcomshare
Joey Jurries’ favorite high school memories have a common theme: “Football band, pep band, hockey band.” Playing the snare drum in the band for sporting events has been the hands-down favorite for this high school senior, who has played the drums for seven years.
In fact, drumming led to a memory Joey will never forget! In 2019, he won artist Josh Wilson’s “Dream Small” contest. He flew to Nashville and got to spend time with the artist in his studio (pictured above). His favorite memory from the trip? “Going with Aunt Kim. Drumming in his studio.”
But while drumming has been a favorite part of high school, when Sam asked Joey about his goals for the future, he said, “Swim and work.”
Joey’s been a full-fledged member of the Lakeland Union High School varsity swim team all four years and served as co-captain of his team this year! Before each meet, the co-captions take turns pumping the team up, and Joey always told them, “Swim fast!”
Among Joey’s favorite things about swim team: “Boys team. Max. Coaches.” He started swimming at just three years old, swam for the first time for Special Olympics at eight, and can’t remember a time when he didn’t love the water.
Since Sam and Joey talked via FaceTime, Joey not only told Sam about his prized possession, he took him to see the giant-cookie-sized gold medal Joey won in 2018 as Junior Division World Campion in backstroke at the World Down syndrome Swim Championships. And in fact, this year, Joey is one of a very few swimmers with Down syndrome who achieved Paralympic motivational times in order to compete at the Wisconsin state championship meet. He and his friend, Luke Drumright like to call their sprints, “Flash Fast,” as both love swimming and the TV series, The Flash.
Among Joey’s goals? “World champion again. Flag.” The World Champion gets to carry the flag, something Joey hopes to do again. He plans to continue swimming for the USA Down Syndrome club team.
Joey also plans to work, and in fact, his favorite part of school right now is his Wings Program, through which he’s worked several jobs—at Ace Hardware, AV-W Grade School, Wild Berry Market, Save More Foods, and his favorite is Murtaugh’s, a local bar and grill owned by the parents of fellow swimmers.
Though diagnosed with apraxia, Joey is a very social young man and loves hanging out with his peers. After sophomore year, Joey made the jump from an inclusive High School program to the Wings program, which allows him the educational opportunity to work on his life and work skills and spend part of his day in an inclusive classroom, and the other half gaining work experience in the local community.
Already very independent, Joey enjoys biking to work, coming home afterward to fix his lunch and watching a movie on his own.
Read more of Sam’s interview with Joey, who Sam hopes to hang out with soon.
What’s been the worst thing about the pandemic for you? “T-birds meet trip cancelled.”
What are you looking forward after the pandemic is over? “Working at JJ’s acres (a family-owned greenhouse). Church. Green grass.”
What other activities are you involved in? “Hockey, basketball, lifting weights, playing racquetball, biking.”
What do you like to do in your free time? “I like biking around. Watch Flash—episode seven coming out. Iris is coming back.”
What do you like to do with your friends? “The girls. Katie, Nora, and Brooke. Play bags, ping pong, play hoops, Minecraft, race game.”
What’s one of your favorite memories? “Go see Aunt Jen in Milwaukee. Wings program. Mini golfing.”
We can’t wait to meet in person and hear what’s next for you after graduation, Joey!
What’s Luke Drumright, 22, looking forward to? “It’s date night tonight! We are going to have pizza and some ice cream. It’s almost five years we’ve been dating. I met Melina at her house, and we started hanging out together.”
Although of course date night takes precedence, Luke has more pretty awesome events on the horizon, and he has already accomplished some huge goals including traveling to Canada and Italy for World Championship meets for Down syndrome swimmers, moving out of his parent’s home, and being the first person with Down syndrome to receive a “Think Cardinal” certificate from Saginaw Valley State University (SVSU) from 2017 to 2018.
Here’s the rest of Sam’s interview with Luke, who is a huge inspiration for Sam, as well as being kindred TobyMac super fan:
What do you remember about college? “When I first stayed in my dorm room, I would wake up every morning at 3 a.m. I would pop up on the pillow, get showered and ready. I was all excited to get up in the morning and get to class.”
We don’t know too many who can claim the same level of excitement, but many of us can probably relate to the rest of what Luke said about his college days:
“It was a little scary at first, but then it got better when my brother and sister and my parents encouraged me.
“It really was a lot of fun. I got to get to know a lot of friends, meet new people I had never met before, and have my own dorm room. I worked at the Marketplace and as a lifeguard. [Luke did salad prep at the Marketplace, and worked at the pool during meets and even got to lifeguard!]
“I was also in the band. I played the cymbals.” See him play here: https://youtu.be/WrMbbJDUjk
“My major was behavioral arts, and my favorite class was a communication class. I learned how to connect with new people, and to know what they are doing with their lives. I also did a YouTube video. I got [Red Cross] certificates in lifeguarding and water safety instruction.” [Check out Luke’s You Tube conference presentation about his experience at SVSU and his goals for the future here: https://youtu.be/1gnhJIO8DZ0 ]
What was the worst thing about college? “It was stressful at times. I made little mistakes, like on the bus. That was a bit of a lesson for me.”
Luke made the mistake of getting on an earlier bus that took him into the city before it went back to campus. He and his mom both say the biggest challenge in making the jump from high school to college came in learning how to use the iPhone for his schedule, since there was no bell reminding him to get to the next class.
What was the best thing about college? “I learned a lot in college, but the best thing was getting to know friends.”
Why do you think it’s important for people with Down syndrome to go to college? “Well, for me, if I hadn’t gone to college, I would have had to find my job to get my work ethic going.”
After completing a two-year certificate, Luke found a job at the Cottage Creamery, where he’s done everything from scooping ice cream, opening up the shop, turning off the alarm system, and serving customers to cleaning the restrooms. He also prepares for events by scooping pre-orders into cups and helping run private parties. While COVID reduced Luke’s hours last year, he is looking forward to getting back to work this April.
What’s most important to you? “I am a swimmer. I‘ve been swimming [for competition] since 2009. I’ve been on five different teams. I started out swimming with the [Midland] Dolphins, then I swam for Special Olympics. I swam for the Dow High School team for all four years.” [Watch his 50 Free PR here: https://youtu.be/dWNjCJoINNs ] “After that I got a chance to be an assistant coach for Jefferson [middle school] swim team. I’m also part of the [Midland] Master’s Swim Team, and the biggest one is the USA swim team.”
Did you enjoy traveling to Italy or Canada more, and tell us why. “Italy, because I liked learning about different cultures. (The meet took place on the Island of Sardinia) When I went there, I visited a memorial for all the people that have been lost at sea. I felt sad for them, so I decided to swim in their memory.”
Luke is currently swimming four days a week in the hopes of making the USA team that will travel to Portugal in 2022 for the Down Syndrome International Swimming Organization (DSISO) World Championships!
After college, you moved out of your parents’ house. Your mom says your college experience helped you connect with young adults including your housemates Jack, who’s also a personal trainer, and his fiancé, Catherine, a dietician. Tell us about where you live now. “The house I have is an old house from the 1920s. The roommates I have are Jack and Catherine. Jack proposed to her, and now they are getting married in October and I’m going to be the best man.”
What do you think are the most important things to know how to do if you want to live on your own? “Well, for one thing I tried to microwave a waffle. It stuck to the plate, and I had to put both in the trash. [Luke learned things like how to cut up vegetables when he worked at the Marketplace at SVSU.] After college, I joined a cooking club with my friends. With COVID, we started doing it on Zoom. We have a lot of fun cooking, playing games, and eating together.
“At first, I kept being lazy. Now every time I wake up, and see the dishes, I do that first, then shower, then breakfast, and my workout routine.
“Also when I first moved here, my parents bought me a lawn mower. At first, I did not mow the lawn, but I am used to it now.”
What do you love about being independent? “I love making my own plans with my friends and being in control of my life. When I’m on my own, I like to study about science, superheroes, and the brain.”
The pandemic has been challenging for Luke. He has missed being with his friends and being out in the community. He is looking forward returning to his job, volunteering, swim meets, concerts, dances, and theaters. The good news? Luke’s mom, Susan Drumright explains, “Luke has so many people in Midland working to help him shine.” For example, the owner of The Cottage Creamery is working hard to find even more ways to creatively include Luke. She is developing the idea to have Luke take online orders for nursing homes and businesses, where Luke scoops the orders and then delivers frozen treats to their doors. Many others support Luke from behind the scenes, such as the volunteer coordinator at the local hospital and his case worker at Community Mental Health. They actively engage with him to find opportunities for him to give back to the community he loves!
Luke’s inclusive community, love of people, and adventurous spirit have afforded many unique opportunities! We can’t wait to see what the next chapter will bring!
Caleb J. Prewitt may only be 13 years old, but already he’s been a guest on the Today Show, appeared on the big screen in Times Square, and he and his mom have more than 27,000 followers on Instagram.
When we spoke, Caleb had just returned to his in-person eighth grade classroom at North Florida School of Special Education. When asked about school, he said, “I wear a mask.”
Like many, he was adjusting to the new normal, and missing his routines, which include Special Olympic sports, Sunday school, and gatherings with friends. But the Prewitts have been filling in the gaps in fun ways, and we were both so impressed with how they have been making even these crazy COVID days count.
Caleb now stars (along with his mom, Karen) in a weekly YouTube cooking show, which they stream live to his Facebook page, cooking different dishes every Friday. Caleb’s favorite dish to make? “Sausage pizza.” And his all-time favorite baking ingredients? “Chocolate chips, marshmallows, and chocolate syrup.”
Caleb’s dad got him interested in cooking in the first place (because he likes to do whatever his dad is doing), and he and his mom began cooking together before COVID, using recipes from Raddish Kids, because they liked the company’s step-by-step instructions with photographs.
Then in January last year, Raddish Kids invited Caleb and other children to cook together on the Today Show, showcasing how kids of all different abilities can enjoy learning to cook.
Caleb’s YouTube show began as a great way to continue building his skills while having some fun, but it has also sparked great conversations about future opportunities for Caleb and others—including inclusive employment at a potential church café.
Experiences shape us all, and Caleb’s many cooking experiences (including a cooking camp this summer) have given him food for thought as well. So much that when asked what he might like to do when he grows up, he said, “Maybe have my own restaurant.”
Read more of Sam’s interview with Caleb, who was an absolute pleasure to meet via Zoom, and we hope to meet in person one day:
What do you like to do in your free time? “Just Dance 2020, cooking, ride bikes, bike camp.”
What did you enjoy most about your summer? “Orlando, Disney Springs, rides, and the food and drinks.”
Where is your favorite place to be? “Orlando, rollercoasters, bumper cars, the Teacups ride.”
What other activities do you enjoy? “Special Olympics bowling, golf, football, track, equestrian, and swimming in the pool.”
What has been the most challenging thing you’ve had to face, and how did you get through it? “I got my tonsils out. And popsicles! We eat them a lot.”
What makes you happiest? “Seeing Evelyn. Going to see my family: Courtney, Steven, Evelyn and baby Charlotte.”
Who are your heroes? “Spiderman and Harry Potter.”
What do you think is most important in life? “Courtney, Evelyn, Emma . . . [Family and friends!]
Have you always liked to cook, or what got you interested? “First show, we did salmon bites.” [Karen: Caleb always wants to be doing whatever his Dad is doing, and he started cooking with his Dad, and has loved it ever since!!!]
We can’t wait to see what’s cooking next, Caleb!
Remember Amy Bockerstette, 21, who said, “I got this,” before masterfully launching her ball out of a sand trap onto the green, and then sinking her putt at the 16th hole during a practice round for the Waste Management Phoenix Open in January of 2019? (In case you missed seeing Amy’s inspirational poise and skill, you can watch the video here: https://youtu.be/rYSjFvCNP7Q)
Since that time, Amy has been one busy lady. “I have been all over the country playing golf, giving speeches, and making new friends.” These friends include the 2019 U.S. Open Competition winner, Gary Woodland, about whom she says, “We are best friends.”
Amy returned to the Phoenix Open in January of this year, and was thrilled to receive a $25,000 check from the Phoenix Thunderbirds for her family’s new foundation, aimed at helping individuals with disabilities learn to golf.
“My family formed the I GOT THIS Foundation to give back to others like me,” she says.
Read Sam’s interview with Amy to learn more about this new foundation, about Amy’s advice for others who’d like to play golf, as well as about how she become the first person with Down syndrome to receive an athletic scholarship!
When did you start playing golf? “I started playing golf when I was 14.”
What do you like most about it? “I like meeting other girls and I have fun riding on the bus with my teammates. Putting is my favorite thing.”
How much time do you spend practicing every day? “During the college season, I practice or play 2 - 5 hours every day. When we are not competing, I take lessons 2 - 3 days a week and play 1 - 2 times a week.”
(Congratulations on being the first person with Down syndrome to receive an athletic scholarship to College!!!) “Thank you!”
Was that a big surprise? Tell us the story! “Yes, it was a big surprise. In spring of my senior year of high school, my Dad sent an email to the Women’s Golf coach at Paradise Valley Community College. He asked if I could be part of the team in some way. The coach looked at my videos and my scores and he offered me a full scholarship. It was very fun and exciting!”
What do you like most about the community college you attend? “I like meeting the other students in my classes. I have made really good friends.”
What classes are you taking? What is your favorite and why? “I study dance, so my classes are Modern Dance, Jazz Dance, Hip Hop, Argentine Tango, Zumba and Yoga. They are all very fun and I have learned a lot about different types of dance.”
What do you want to do after college? “I want to get a job, keep playing golf and have fun with my friends.”
What are your other dreams for the future? "I want to continue traveling across the country, playing golf with disability groups and advocating for people with Down syndrome and other intellectual disabilities.”
Who do you look up to the most in the golf world? And in life? And why? "Gary Woodland! We are best friends. He caddied for me on the 16th hole at the Waste Management Phoenix Open. He also surprised me on The Today Show after he won the U.S. Open. Sometimes we text each other and he is very nice.
“I also really love Cori Matheson at Girls Golf of Phoenix. Girls Golf is a national program and Cori has an awesome program for girls in Phoenix. I learned a lot from her.”
What’s been the most exciting thing for you that has happened because of your new foundation? “I have met so many people, and everyone has been so nice to me. I have been all over the country playing golf, giving speeches and making new friends. The most exciting thing was seeing Gary Woodland again on the 16th hole at the Waste Management Phoenix Open. So many people were there cheering for us and The Thunderbirds donated to our foundation.”
What has been the most exciting thing that has happened for others because of your new foundation? “My family formed the I GOT THIS Foundation to give back to others like me. We are just getting started. I am so thankful for the ability to help other people with Down syndrome and other disabilities.”
We love your vision of getting more people with intellectual disabilities involved in playing golf! “Thank you. I like playing golf with my Special Olympics friends and people with Down syndrome. I want more people like us to learn that golf is such a great sport and is a great way to be included.”
What’s your advice for others with Down syndrome or other intellectual disabilities who would like to get involved? “Find a coach. Special Olympics offers golf, too. Work hard and practice a lot. Breathe and believe, and you can achieve your dreams.”
Are there any upcoming events planned that you are really looking forward to? “This year, because of the virus, we are not planning any events but I will be attending a few golf outings to help raise money for people with intellectual disabilities.”
What’s the message you have for the world? “We are all different, with our own abilities, gifts and talents. By coming together, we make the world a better place.”
“It could happen,” says Sean McElwee, 26, one of the stars of the Emmy Award-winning reality show Born This Way, who loves reminding people to chase their dreams . . . because they just might come true.
As a child, he says, “I always wanted to be on TV.” His big dream came true in December 2015 when Born This Way debuted. “That’s what faith can do,” says Sean, one of the seven individuals with Down syndrome whose life was chronicled on the groundbreaking A&E show, until the finale in December 2019.
Sean says the show changed his life in many ways. “I learned how to respect the camera, to respect Laura [the producer], how to cook, how to learn from mistakes, and about good attitudes.”
When the show began five years ago, Sean was 21 years old and hadn’t yet joined the workforce. During the show’s tenure, he worked at Home Depot and at Get Air Surf City (an indoor trampoline park). Today, Sean not only owns his Seasnese t-shirt company, he’s also a keynote speaker, and has started his own YouTube show so people can continue to follow his life.
In 2019, he testified on Capitol Hill about the importance of all businesses, no matter how small, giving back to the community. Rep. Pete Stauber (R-MN) introduced him. Sean remembers, “I was an inspiration to him, so it was hard for him to get the words out. I was his favorite.”
Sean’s small business donates $1 of every shirt sold in order to give baby onesies to Down syndrome organizations as gifts for new parents. So far, Seanese has given away 690 baby onesies, and he and his mom and dad, Sandra and Rick, wish they could give one to every baby born with Down syndrome.
To hear more from Sean, here’s the rest of Sam’s interview:
We know you are a ladies man. Tell us about your girlfriend. “Her name is April and I met her in drama class. We have been dating for five months. She’s awesome and sexy!”
What does faith mean to you? “I have a cross tattoo, because it’s all about Jesus. I volunteer at church [in Sunday school]. I help the kids and babies adjust their attitudes.”
What are your goals now that the show has ended? “Right now, my number one goal is to get married, and to get an RV.
What are some of your dreams that haven’t come true yet? “I want to meet Ellen DeGeneres. I also want six-pack abs like John Cena on WWE.
What are the best things about your life right now? “Having my own apartment. Eating lunch out every single day, and buying food. I get to do everything I want with no parents telling me what to do.”
How long have you lived in your apartment? “About three years.” [Sean lives about 10 minutes away from his parents, and has four staff people—including Alex, his roommate, and Vanessa, his job coach.]
What does Down syndrome mean to you? “Everything. I love Down syndrome.”
Where do you see yourself in 10 years? “I am going to be a preschool teacher.”
To keep up with all of his next steps, tune in to Sean's YouTube show!
“One sees clearly only with the heart. Everything essential is invisible to the eyes,” says 29-year-old Charlotte Woodward, quoting from The Little Prince.
The first person with Down syndrome to attend George Mason University as a degree-seeking student, Charlotte is currently a junior pursuing a bachelor’s degree in sociology with a concentration in inequality and social change. What does Charlotte believe are the most essential things to know about her?
“I am a big advocate for others, and for equality. I am kind, caring, and have always wanted to help others,” she says.
She has already helped many through her role as Community Outreach Associate for the National Down Syndrome Society. The recipient of a heart transplant, Charlotte is without a doubt a more poignant advocate due to her life experience, since one of the many laws she’s seeking to change would keep states from discriminating against people with Down syndrome for life-giving procedures such as organ transplants. She explains, “I am giving voice to other people who will benefit from ending #LawSyndrome,** a series of outdated laws that hold us back. And we should already have these rights. They should be available. We shouldn’t have to fight for them.”
Currently, California, New Jersey, Massachusetts, Maryland, Oregon, Delaware, Kansas, Ohio, Pennsylvania, Louisiana, Indiana, and Washington have amended these organ donation laws. She says, “Fifteen new states are considering adopting this piece of legislation.”
What would Charlotte like to say to legislators in these 15 states? “I would say stop putting limitations in our way. We are ready, willing, and able to do lots of things in our communities. With the help of life-saving organ transplants, we will be better able to do that.”
Tell us what else your job with NDSS entails? “I lobby congress to pass bills into law. I am also Editor in Chief of an upcoming magazine.”
Tell us more about the magazine. (Charlotte submitted the following answer in writing, since we forgot to ask this question. Thank you, Charlotte!) “The online magazine will be called ‘Our Voices’ and it will be by and for self-advocates with Down syndrome. It will contain articles on a wide range of issues that affect the Down syndrome community. In each issue, we will highlight the stories of self-advocates as well as share NDSS news updates.”
What do you hope to accomplish through your role at NDSS? “I have a mission and purpose at my job and that is ending the myths and stereotypes and regulations that make up Law Syndrome. I want to end #LawSyndrome once and for all, through not just national and state policy initiatives, but where the power is really rooted, and that’s in the community.”
How do you plan to reach communities? “Through events, social media, emails, and such.”
What’s your favorite part about being a self-advocate with NDSS? “Breaking down barriers.”
What’s been your greatest success, personally and professionally? “My heart transplant has been my greatest success. I am so, so grateful for the generosity of my donor, Sadie, and her loving family as well as for my transplant team, who saw me for myself, not just my diagnosis! At NDSS, probably C21 (a pop-up restaurant through our #DSWORKS®️ program), helping to get some bills passed, and hosting events like the Adult Summit.
What would you say to others with Down syndrome who are considering college? “I would say I mean, considering college is a choice that is made in high school. Make sure you know what you want to study, and that it’s included in your IEP plan. Too often, people are discouraged from their dreams, but I would encourage them to go on reaching for those dreams. My advice would also be to stand up for what’s right and make sure that sheltered workshops don’t end up on the IEP plan.”
What have been best and worst portions of your college experience? “I have never had any worst experiences. The best has been being involved in the Best Buddies program. It is a lot of fun and it gives me a way to make friends. I wish every school had some kind of Best Buddies Program.”
Before attending George Mason, you earned a degree from what community college? “Northern Virginia Community College, Annandale Campus.”
What were your favorite classes there? “I ultimately got a general studies degree. Some of my favorite classes were oceanography, acting, drawing, history, Greek mythology.”
What does Down syndrome mean to you? “Having an extra chromosome makes me, me. It makes me unique. I would never change it because of that. People love me for being myself.”
Who is the person you most admire, and why? “I have a long list of people I admire, and among them are strong women who are out there in society making a difference. Number one is my mom. Ever since day one, she has always advocated for me. She is my number one advocate.”
To hear more from Charlotte, who clearly sees with her whole heart, you can listen to her interview on The World is Just a Book Away podcast (an international children's literacy nonprofit), and don’t forget to follow her on Instagram @charlottewoodward_unlimited!
[**Charlotte’s number one advocate, her mom Darcy Woodward, sent us the following information that explains more about #LawSyndrome: #LawSyndrome is a campaign launched by the National Down Syndrome Society (NDSS) to address the challenges people with Down syndrome confront when they want to follow their career dreams, get married and live independent, productive lives, yet face jeopardizing the critical government supports they rely on heavily, such as health care. The new campaign aims to shed light on misconceptions that current federal public policy does not address, and to give all individuals with Down syndrome (and other interested parties) a voice in confronting these dated beliefs as well as to provide a platform to encourage congressional leaders to act.]
David DeSanctis, 27, was one of the first actors with Down syndrome to play a leading role in a film, and he now serves as a Public Outreach Associate for the National Down Syndrome Society (NDSS). We were lucky enough to meet him last spring at the Buddy Walk on Washington and have since rented his 2014 movie, “Where Hope Grows,” on Amazon. Sam took inspiration from David’s character’s level of independence, and was excited to learn more from David, who said of the movie, “It really changed my life.”
To learn more about David, including his advice for others with Down syndrome, here’s the rest of Sam’s interview:
Who are your role models and why? “I used to look up to Miley Cyrus back in high school. Now I’d say my role models are Michael Rosenbaum, who played Lex Luthor in Smallville, and Dwayne (The Rock) Johnson. I just learned that The Rock has a childhood friend with Down syndrome. I loved that. When I first watched the video about him and his friend Milton Rosen, I literally cried. It really moved me. Now I truly want to meet Dwayne ‘The Rock’ Johnson and his friend Milton.”
How did it feel to be one of the first actors with Down syndrome to play a leading role in an English-speaking film? “I loved it. That was about five and a half years ago now.”
How did being a movie star change your life? “I learned good things on the set. Before I was a movie star, I had taken a broadcasting class at my high school in Louisville KY, but I really didn’t know that much about the movie making industry, so I learned a lot about how to make a movie. It really changed my life, and impacted my life.”
[David’s job with NDSS came about thanks to the movie (see his comments later), as well as years of opportunities for inspirational speaking across the country. He says, “I have gotten to see new places all around the nation. Everywhere I go, I’ve met extremely cool people.”]
To watch the trailer, and learn more about David’s movie, go to: https://www.imdb.com/title/tt3200980/
Did you know how to drive a car before the movie? “They asked me to learn how to drive a car—I still don’t have an actual permit or a license yet, but I had to drive in the movie.
“Once when I was on the set, I thought I was in drive, and I put the pedal to the metal. My parents said they were thinking, ‘Oh no, he’s going to burn through a stop sign.” But luckily I had left it in park, so I just revved up the gas pedal.”
“In high school, when I was 15 or 16, my dad let me drive in the neighborhood. Then later, my friend taught me how to drive her golf cart, and I do that for Special Olympics every year. But I’ve also been driving golf carts outside of Special Olympics. I get to practice driving them at our vacation spot in Georgia. I’ve also been driving their go-carts down there. If someone challenged me in a go-cart race—I’ll beat them every time. I’ve been doing go-carts since my movie. Part of the movie was filmed at the Renaissance Fun Park in Middletown, KY. They had go-carts there, and I’ve been doing go-carts ever since.”
Do people ever recognize you when you go places as “Produce,” your character from the movie? “At first they did, sometimes even outside the state of Kentucky. When I visited one college campus when I was doing my public speaking career, I was about to order my lunch and there was a line of people waiting to get pictures and autographs from me. It was hard for me to order my food and eat my lunch. But now, that has died down.”
Are you still acting? Would you like to be in another movie? “I would love to, but I just have to wait for my agent to send me roles. I did get to be an extra in another movie called “Anastasia: Once Upon a Time.” I was in the scene called “Beatrice’s Birth Day Skating Party.” I was playing an arcade game and talking to kids, and sitting at a concession stand, but I don’t think they know the release date for that movie yet.”
How did you land your job with the NDSS? “That was due to the movie that I was in. The producer of the movie had known the CEO of NDSS at the time.” [The director introduced David to the CEO, and they got to know one another.] “I had to apply and fill out paperwork, and fax it over to them. They gave me the position of public relations on a golden platter.”
What does your role with NDSS involve? “Every Tuesday, we have a staff conference call, and there are a lot more things that I do for the NDSS. I go to Buddy Walks to promote NDSS, and I go to the Adult Summit every spring, and the gala and auction in New York City every January.
I’m also writing blogs for them, and also contacting all the people who attended the 2019 adult summit to invite them out to Arizona for the 2020 adult summit for next year.”
When did you learn to ride a bike? And how long did it take you? “I’ve been doing that my whole life, since I was about six or seven years old. I’ve always loved to ride bikes. My family goes riding in a park called The Parkland—that’s one of the parks in Louisville, KY, but there is another park in my neighborhood (the Louisville Loop) that is going to be attached to The Parklands.”
What do you hope to accomplish through your role at NDSS? I am the Public Outreach Associate. There have been people assigning me to different projects, so I don’t know if there’s any one accomplishment. One thing I’d like to do in the future is to become part of the new leadership—and to rename it the National Intellectual Disorder Society. I would like to include everyone with IDD—all of the people with different disorders together. There is an organization here called the Louisville Adaptive Rowing Club, and they never turn anyone away who has any disability or disorder. I’d actually like to rename all of the organizations I’m a part of. The National Down Syndrome Congress would be the National Intellectual Disorder Congress, and Best Buddies would be Best Families Forever.
What are some of your other dreams for the future? “That’s one of my dreams, but another one of my goals is to live out in Venice Beach, CA, to work with Will.i.am (a famous rapper) in his building, and to work with his 3D printers.
Where do you see yourself in five years? “I answered this question nine years ago, when I was back in high school. My senior class did a book about where we would love to be in 10 years. I said I would love to live in Florida or the Bahamas, and own a motorcycle. Those things haven’t happened.
“Now I’d say, I’d like to have my own acting agency, picking out whatever movies and shows I want to be in. Instead of reality shows or independent movies, I’d pick big blockbuster shows.”
What advice do you have for others with Down syndrome? “I know people with Down syndrome who want to be actors. My advice if they are in middle school or high school would be to sign up for drama classes. If they are in college, to major in theater, or sign up for acting classes. After that, maybe go to NYC if you want to be on stage, or move to California if you want to be in TV or movies.
“For acting, you have to build your resume, and you have to practice the parts they give you for auditions. The other thing is to know, if you get a part, you have to practice your lines every day all day. I used to practice them to music.
“Other than that, I do cooking, biking, and I’ve taken two years worth of piano. My advice on biking is just getting on and if you fall off, get right back up and keep getting back on and riding. For cooking and piano: it’s practice, practice, practice.”
Still giving inspirational speeches, following are just a few of David’s words of wisdom (and a song link) for all: “Go for your dreams. The sky is the limit. Never take ‘no’ for an answer, and ‘Don’t Stop Believin’” https://youtu.be/1k8craCGpgs
“All the world’s a stage, and all men and women merely players . . .”
Nowhere do Shakespeare’s words ring more true than in England, and here too, we anticipate with excitement the roles people with Down syndrome will play even more fully in the future!
One of Sam’s passions is for travel, so here (for anyone who’s interested) are Sam’s top 10 things not to miss when visiting England:
1. The Tower of London with all the armor
2. The village of Hawkshead (where William Wordsworth attended grammar school from 1779-1787).
3. Hiking Tarn Hows (What in tarnation is a tarn? “A small steep-banked mountain lake or pool,” according to Merriam-Webster.)
4. Having “Hairball” (Herbal) Tea at Westminster Abbey
5. Attending the “heavenly and beautiful Choral Evensong” at York Minster
6. Walking the historic gates and walls at York, some dating back to Roman times
7. Watching actors reenact scenes from Shakespeare’s plays at his birthplace
8. Meeting the Romans in person at the hot springs at Bath and dressing up in Roman style
9. The beauty of St. George’s Chapel at Windsor Castle (site of the most recent royal wedding).
10. Hiking alongside sheep, donkeys, and cows in the Lake District thanks to public footpaths
“When I was little, I always wanted to have my own restaurant. I saved up all my checks from birthdays and Christmas, and when people would give me gifts, they would say, ‘Save it for your restaurant,’” says Gabi Angelini, 21.
After Gabi graduated from high school, she and her mom, Mary, considered opening a restaurant, but the idea was daunting. That’s when the pair decided to visit Bitty & Beau’s. “My Dad loves coffee. I loved their hot chocolate,” says Gabi. After their visit, Gabi remembers, “I said, ‘Let’s do it!’”
Two years ago, the Mom and daughter team founded Gabi’s Grounds, an online coffee shop that sells coffee grounds, beans, and K-cups, in addition to printed clothing and coffee-themed gifts.“My brother makes coffee soap for us,” says Gabi, adding that the dream is to someday have,“lots and lots of coffee shops everywhere!”
“My part is to do deliveries, work the booth for events, help people, and make coffee for some events, and do inventory,” explains Gabi, who grew up with five brothers in Raleigh, North Carolina.“My brothers taught me how to skateboard, play baseball, and basketball, and ride bikes,” she says.
In addition to all her shop duties, for the last four years Gabi has also worked three hours a week as a bagger at Harris Teeter, a local grocery. Here’s more of Sam’s interview with Gabi, who was flying to Detroit with her Mom to be a vendor at the National Down Syndrome Society’s Adult Down Syndrome Summit the day after we talked.
How often do you work at events? “We try to do at least one event a week. I love traveling— I really love it with my mom. Sometimes the events are boring, but I just go with it. I love it when they have dessert and dancing.”
What makes you happiest? “Making deliveries for my business, dancing, breakdancing, gymnastics, and singing. I did breakdancing at NC State Best Buddies. I also like hanging out with friends and going shopping.”
We love the logo for your shop! Who came up with A HUG IN A MUG? “The lady that designed the logo came up with it. Her name is Rhonda. She’s a friend of my mom’s. She did that because I give a lot of hugs.”
What’s the hardest thing for you? “Nothing is hard for me. Maybe packing up for events for the coffee shop, but it’s all good.”
What’s the funniest thing that’s ever happened to you? “My dad being goofy.”
What do you like to do more than anything in the world? “I love playing with my dog, Willow.”
Tell us what you want people to know about you. “Gabrielle Angelini is cute.”
What keeps you busy these days in addition to your business? “I do Special Olympics skiing and gymnastics and basketball, and summer camp at New Life Camp—it’s a Christian camp that has sports. I also go to Wake Tech on Monday through Thursday, from 8 to 3. They teach me basic math and reading, and I’m starting a barista class.”
In addition to having lots of coffee shops, what are your dreams for the future? “To play basketball, and to get a husband and a mansion.”
Voted first-place vendor at the Farmer’s Market in Clermont, Florida, recently, Allison Fogarty, 28, has been cooking up a storm for some pretty cute customers on a regular basis as the owner of DOGGY Delights By Allison.
Recently interviewed by Rachael Ray, we asked Allison how long she’s been a fan. She said, “Since I got sick when I was 11. I had to have a g-tube on my stomach, and I couldn’t eat or drink. That’s when I started watching The Food Channel. Now it’s my favorite thing to watch, because I love to cook.”
Inspired by Rachael Ray, Allison was thrilled to FaceTime with the star recently! (Watch the video by clicking here: https://www.rachaelrayshow.com/articles/this-27-year-old-chef-makes-homemade-treats-for-dogs-in-her-community-after-being-inspired)
Here’s how she describes the experience:
“Rachael said, ‘Hey Allison, would you like to cook with me on my show sometime?’ So, I will be going to New York to see her. Getting to know her was the best thing. She knows I shop at BJ’s, so she sent me a $500 gift card in the mail! She’s a big dog lover!
“What I like about Rachael is that she’s funny—like when she doesn’t measure anything. She always says, ‘I already eyeballed it.’
“I told her, ‘I would love to try your pizzania—it’s a cross between pizza and lasagna.’”
Allison can’t wait to make dog treats with Rachael Ray on her show! And since FaceTiming with the star, here’s how things have changed: “Now I’m a celebrity—I’ve been on the radio and TV many times. I’ve been on Channel 6, Channel 35, and Orlando 60. Some people say, ‘I think I should have you sign my dog treats—can I have your autograph?’”
Here’s the rest of Sam’s interview with Allison, who moved from Chicago (where she was very involved with the UPS for DownS organization) to Florida in 2017, and soon started her own business through the Down Syndrome Association of Central Florida’s very first Entrepreneur Academy.
“When we lived in Illinois, we did our first business called Lunch Break. It was for the teachers where my mom used to teach. We made and delivered about 30 lunches a week at her school—we did that job for 2 or 3 years, and then after that we moved here because we wanted to see my brother, Laura, and the kids. We started babysitting them every day—Monday, Tuesday, Wednesday, Thursday, and Fridays.
“DoggyDelights by Allison was my mom’s idea. We saw a lot of dogs in our neighborhood, passing by our lanai, and that gave her the idea. So we looked up all the recipes on her lap top, printed them, and tried them out. Then I’d say, ‘Hey mom let’s do this instead of that.’ So we started changing the recipes. Now we make flavors like chicken and rice, peanut butter, pumpkin, and sweet potato treats. We use no salt and no sugar, so they are very healthy and good for dogs.
People can order online—or we can deliver to their house—and we go to a farmer’s market on Sunday mornings.
“The best thing about my treats is I put them in the freeze dryer so they can be shipped. At the market, we also sell frozen treats. If dogs don’t have teeth, people can defrost them. We have a lot of toothless customers, because our treats are soft when you let them thaw.”
“Actually making the batter for the treats is my favorite part. My least favorite part is to put the batter in the silicone trays. I made 5 batches of sweet potato, and four batches of chicken and rice, and 6 batches of pumpkin treats today.
“My worst day was once at the farmer’s market it was so hot, and we weren’t getting any customers. I said, ‘This feels like a desert to me.’”
You’ve been through a lot of medical issues—what kinds of difficulties do you still face? “Some days, we take off. If I have a bad cold, it’s hard for me to be working at my job. But sometimes you gotta do it. My job gives me exercise, and I make new friends with dogs and their owners. Some of our customers come every week to talk and hang out.”
Allison’s mom, Pat, says their neighbors with dogs have really encouraged Allison. One neighbor took her to the rescue shelter to test out all the treats on the dogs there. The same neighbor also comes to the market every other week with dogs that need to be adopted. “And I always say, ‘I wish I could keep you,’” says Allison, who would like a dog.
Do you have a dog? “No. I have four cats. The cats don’t care about the treats, but when I make a big mess in the kitchen, they eat it.”
What are your goals for Doggy Delights? “My goals are to sell my treats in stores, and we are going to need help—we want to hire people with disabilities.”
What else do you hope to accomplish—what are your hopes and dreams? “I want to have a store or restaurant, or a shop for my treats with my own apartment above my shop.”
What do you want to be sure that everyone knows about you? “I am a chef, and I have my own business.”
“I felt the magic in me, and it helped me sing,” says Nick Pesce, 21, who worked diligently to land his dream role as Bert in the UPS for Downs/EDGE of Orion production of Mary Poppins, Jr. last week.
Not only did he practice on his own, (“Every day with a singing machine and my Bluetooth in my room.”) as well as with his family, he also had the help of someone special.
An inclusion student through high school, Nick’s middle school choir teacher, Kelly Harper, volunteered once a week all summer to help him prepare for his audition. “Ms. Harper is always so fun and nice. She is a great choir teacher! We have so much fun and are silly together,” he says.
Before taking on the role of Bert—a dream come true for this Dick Van Dyke fan—Nick played the gym teacher in “Hairspray” and Pumba in “The Lion King.” He says, “I like musical theatre so much.”
What did he learn in this year’s role? “I learned to tap dance, and to work with others on a script. . . . To work really hard for what you really want. . . .and . . . Anything can happen if you let it,” he says with a smile.
Here’s the rest of Sam’s interview with Nick:
Where do you go to school? “I’m in the last year of transition at Lake Zurich High School and I go to Harper College. I’m learning about writing and technology and socialization and communication.”
Where do you work? “I work in the cotillion banquet hall. Right now it’s just one or two evenings a week. I’m working toward being a full banquet server.”
What were some of your best and worst memories from high school? “I was the sophomore prince for homecoming, but my favorite thing was playing in the marching band with my drum line friends. I miss those friends so much. They left to go to college.” Nick says his worst memory was a cooking class with a teacher who just didn’t get what inclusion is all about. He wound up dropping the class.
What makes you happiest? “My best day ever was the day I met Jamie, my girlfriend, two years ago . . . and being in college.”
How did you celebrate Valentine’s Day? “I had one red rose like on “The Bachelor,” and a romantic card. I picked up Jamie at her house, and then we went out to see a movie called, ‘Isn’t it Romantic,’ and we ate some dinner at Chili’s.”
What other activities do you enjoy beyond acting and theatre?“I like to pump it up for exercise. I go to LA Fitness with my dad to lift weights. I also like swimming and playing hoops, yo-yos, and blackjack.”
Where will you be in five years? “In five years, I’ll be a graduate of Harper College, and I will be living in Wisconsin and working as a banquet server in Lake Geneva.”
What are your dreams for the future? “I am a responsible adult. I want to live on my own without any parents. And I will get married and live with my honey or friends.”
Photo (at left) credit: Sam Duray
