House unanimously passes bill for first NIH-wide Down syndrome research program

The United States House of Representatives has unanimously passed legislation that would permanently authorize the first NIH-wide Down syndrome research program and ensure research continues to help improve the lives of people with Down syndrome. The bill is named in honor of DeOndra Dixon, the sister of actor Jamie Foxx, who passed away in 2020.

Key Takeaways:

• Dixon lived with Foxx after she graduated from high school in 2002, and the two shared an incredibly close bond.

• She frequently competed in the Special Olympics and was the 2011 Ambassador for the Global Down Syndrome Foundation. She was also the first ever recipient of the Quincy Jones Exceptional Advocacy Award.

• Foxx was heartbroken after Dixon passed away in 2020, and created a research fund in her name for the Global Down Syndrome Foundation.

• A bipartisan bill authorizing the first NIH-wide Down syndrome research program has passed the House with a unanimous vote.

The Backstory:

Foxx spoke frequently about his relationship with his sister, DeOndra Dixon, who lived with him after she graduated high school in 2002. Despite the 18-year age difference, he and Dixon were extremely close, and he said she taught him about what was truly important.

“I learned how to live,” Foxx told NBC News correspondent Kate Snow. “Sometimes we get caught up in our world on the extras of everything — ‘Ah, the Mercedes is not the right color!’ And then you see this girl over here,” he said, referring to his sister. “‘I just want to live. I want to dance. I want to love.’ She brings you back down to what life is.”

After Foxx became successful in Hollywood, he moved his entire family to live with him in Los Angeles, largely to ensure Dixon had support. And though his family was not familiar with Down syndrome, he said it didn't affect the love they had for her. “DeOndra has a light on that has been on since she got here… since she was born,” Foxx said, adding that his mother “was smart in immediately keeping her normal…. ‘Hey, you want to be in the choir, you wanna do this, you wanna do that? Go do it!'”

Dixon loved dancing, appearing in Foxx's "Blame It" music video and on stage with him at concerts around the world. She often competed in the Special Olympics and worked often with the Global Down Syndrome Foundation, where she was named the 2011 Ambassador. She was the first ever recipient of its highest honor, the Quincy Jones Exceptional Advocacy Award, as she was a powerful self-advocate.

Dixon wrote about being able to dance onstage at the Grammy Awards:

“Lots of kids with Down syndrome never get a chance to shine or chase their dreams.

Each one has something to offer and each one has a dream. Please help me and my family to advocate for so many beautiful and brilliant children with Down syndrome who’ve been neglected. Together we will make dreams come true.”

Dixon passed away in 2020, leaving Foxx heartbroken.

“My heart is shattered into a million pieces… my beautiful loving sister Deondra has transitioned… I say transitioned because she will always be alive… anyone who knew my sis… knew that she was a bright light,” he wrote, adding, “Well I know she is in heaven now dancing with her wings on… tho my pain is unbelievable I smile when I think of all of the great memories that she left me… my family… and her friends.”

A year later, he honored her on World Down Syndrome Day, writing “My heart… my breath… my soul… I hear your laughter in the house… I hear you sliding down the stairs… my heart… my breath… my soul… I love u Deondra my angel.”

With the Global Down Syndrome Foundation, Foxx created the “DeOndra Dixon Down Syndrome Research Fund," which focuses on improving the disparity in life span for Black Americans with Down syndrome.

The Details:

This week, the Global Down Syndrome Foundation announced on Instagram that the DeOndra Dixon INCLUDE Project Act had unanimously passed the U.S. House of Representatives.

"This landmark legislation would permanently authorize the [NIH] INCLUDE Project, the only NIH-wide research program dedicated to improving the health and lives of people with DownSyndrome," the group wrote. "The INCLUDE Project is already driving groundbreaking research and medical advances in inflammation and immune system dysregulation, Alzheimer’s, sleep apnea, cancer, and more."

Foxx, who was tagged in the post, reshared it onto his own Instagram account, but has not commented.

The Act would expand the reach and funding of the National Institutes of Health’s (NIH) INCLUDE Project. While it currently receives funding, the Act would permanently authorize the project, ensuring it continues receiving funds so research can still be conducted to improve the lives of people with Down syndrome for generations to come.

Diana DeGette, one of the leaders of the House effort, praised legislators for the bipartisan effort in passing the bill:

"Today’s passage of the INCLUDE Project Act shows what we can achieve when we make Down syndrome research a true bipartisan priority.

By advancing this critical legislation, we are showing our commitment to improving health outcomes for individuals with Down syndrome. Colorado is already leading the way as home to the Global Down Syndrome Foundation and their affiliate, the Linda Crnic Institute — the largest institute for Down syndrome research in the world. When this bill becomes law, we will be doubling down on our commitment to groundbreaking science and to the Down syndrome community."

What's Happening Now:

The bill now moves to the Senate, where it is being spearheaded by Senators John Hickenlooper and Jerry Moran.