The DeOndra Dixon INCLUDE Project Act to permanently authorize the first NIH-wide Down syndrome research program has unanimously passed the United States Senate after unanimously passing the House in July.

It is named in honor of DeOndra Dixon, a Down syndrome self-advocate and sister of actor Jamie Foxx, who passed away in 2020.

Key Takeaways:

• Dixon lived with Foxx after she graduated from high school in 2002 until she passed away in 2020, which left Foxx heartbroken.

• She was a Special Olympian, the 2011 Ambassador for the Global Down Syndrome Foundation, and the first ever recipient of the Quincy Jones Exceptional Advocacy Award.

• After his sister's death, Foxx created a research fund in Dixon's name for the Global Down Syndrome Foundation.

• A bipartisan bill authorizing the first NIH-wide Down syndrome research program has now unanimously passed the Senate, following a unanimous vote in the House of Representatives.

The Backstory:

Jamie Foxx and his sister DeOndra Dixon were very close, and after he found success in Hollywood, he moved his entire family to live with him in Los Angeles, largely to ensure Dixon was well-supported. She was known for her love of dancing, and she competed in the Special Olympics. She worked often with the Global Down Syndrome Foundation and was named the 2011 Ambassador, as well as the first ever recipient of its highest honor, the Quincy Jones Exceptional Advocacy Award.

Dixon tragically passed away in 2020, leaving Foxx understandably 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.”

He honored her a year later 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.”

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

For their part, the Global Down Syndrome Foundation further honored her in its work on the DeOndra Dixon INCLUDE Project Act. The bill, which unanimously passed the House last month, is meant to ensure funding for Down syndrome research. The group wrote:

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 INCLUDE Project is already driving groundbreaking research and medical advances in inflammation and immune system dysregulation, Alzheimer’s, sleep apnea, cancer, and more.

The INCLUDE Project already receives funding, but this legislation permanently authorizes it, so research can continue in an effort to improve the lives of future generations of people with Down syndrome.

The Details:

While the House unanimously passed the legislation in July, the Senate has now followed suit, unanimously passing it. Foxx celebrated by posting on his Instagram page a video of Senator John Hickenlooper testifying about the bill.

"Boom!!! This is incredible and huge news for the down syndrome community," Foxx wrote. "My sister. DeOndra Dixon… was blessed to be the spokes person for Down syndrome… by way of the [Global Down Syndrome Foundation]… she was spotted by the late great Quincy Jones… who brought her to the [Global Down Syndrome Foundation]… she became a beacon and a tremendous sign of hope… that more attention and more finances will be concentrated on the down syndrome community."

Hickenlooper spoke about the need for this funding in his testimony, arguing that Down syndrome is currently under-researched due to a lack of funding:

"Thousands of Americans live with Down syndrome, and yet research has been underfunded for decades. In 2017, Congress encouraged the National Institutes of Health, the NIH, to launch the INCLUDE Project, an effort to make groundbreaking discoveries about conditions that disproportionately affect people with Down syndrome, like Alzheimer's disease. 

The INCLUDE Project brings together multiple NIH institutes under a coordinated approach that is already delivering significant scientific discoveries, as well as new treatments. The bipartisan, bicameral DeOndra Dixon INCLUDE Project Act will officially authorize the INCLUDE Project into law. The bill will ensure that Congress and the American people have visibility into the scientific breakthroughs that are so needed for this community."

Actress Caterina Scorsone, who has a child with Down syndrome, also celebrated the news.

Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation, said in a press release that she was thankful for the senators, who made a bipartisan effort to pass the legislation:

We are profoundly grateful to Senators John Hickenlooper and Jerry Moran for their friendship, tenacity, and years of leadership, and to their colleagues on both sides of the aisle who recognized that people with Down syndrome deserve the same investment in research and opportunities to participate in clinical trials as everyone else.

The DeOndra Dixon INCLUDE Project Act will honor our beloved GLOBAL Ambassador DeOndra Dixon and help ensure that the transformative progress made through INCLUDE continues. We look forward to working with our congressional champions to complete the final steps and see this landmark legislation signed into law.

The Bottom Line:

Foxx said in the press release that this effort is especially meaningful for his family.

"DeOndra brought so much joy, love and light into our lives, and she was incredibly proud to be a GLOBAL Ambassador and advocate," he said, adding, "Knowing that DeOndra’s name and advocacy will help people with Down syndrome live longer, healthier lives means more to us than words can express.”