“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 She explains, “I am giving voice to other people who will benefit from ending #LawSyndrome,** a series of outdated laws that hold us back.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.]