Weekly Edition - 4.15.25

From RFK Jr.'s September autism pledge to history-making Down syndrome Alzheimer's prevention, we're tracking developments that affect your family today. Plus, private equity firms transform disability care while a new dental center eliminates the wait for specialized treatment.

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The Big Idea

This week’s featured story: a closer look at developments making waves in the I/DD community

📅They made a promise. Health and Human Services Secretary Robert F. Kennedy Jr. announced at Thursday's White House Cabinet meeting that his agency will identify the cause of rising autism rates by September.

Kennedy stated that HHS has launched "a massive testing and research effort" involving "hundreds of scientists from around the world" at President Trump's direction. He confidently declared, "In September, we will know what has caused the autism epidemic and we'll be able to eliminate those exposures."

Trump supported Kennedy's timeline, suggesting that the answer might be linked to "something" people consume or "maybe it's a shot." Both men have prioritized understanding autism's rising prevalence in America.

This commitment comes amid significant statistical changes. CDC data shows autism diagnoses increased from 1 in 150 children born in 1992 to 1 in 36 children born in 2012. Kennedy claimed new data will show rates rising further to 1 in 31 children.

Scientists have been researching autism causes for decades, identifying genetics and other factors as potential contributors. Many experts attribute the rising diagnosis rates primarily to improved awareness, broader diagnostic criteria, and better access to services. However, Kennedy has brought on David Geier, a known vaccine skeptic, to study potential connections between vaccines and autism – despite Senate health committee chairman Bill Cassidy warning against "plowing barren ground" that has been scientifically debunked "multiple times."

If you'd like to learn more about this developing story and its implications for families affected by autism, check out the original article.

Moments That Matter

Celebrating the everyday victories, breakthrough achievements, and inspiring individuals

🩺Hope Surges. Scientists just dosed the first Down syndrome participant in the HERO study—a clinical trial testing a new drug specifically designed to prevent Alzheimer's disease at its source. This innovative approach targets the genetic vulnerability of people with Down syndrome, who carry an extra chromosome that produces proteins forming brain plaques. By age 40, most have these plaques, and eventually 90% develop Alzheimer's. What's equally significant is the expanding research landscape, with multiple trials now available through specialized clinics, including the ABATE vaccine study and upcoming ALADDIN trial using the FDA-approved donanemab. The research community has prioritized inclusion by enrolling over 350 potential participants and incorporating direct feedback from people with Down syndrome and their families to ensure their voices shape this critical work. If you would like to read more, check out the original article.

Across The Nation

From Capitol Hill to community centers: the national updates shaping our collective future

💰Private equity firms are devouring the disability care industry. Over 1,000 acquisitions in the past decade have transformed a sector once dominated by nonprofits into a profit-driven enterprise. The consequences? Reduced staffing, underpaid workers, service cuts, and unsafe living conditions. This troubling shift hits hardest in states like North Carolina, where private equity now owns more than half of all IDD care beds. Recent federal rules requiring 80% of Medicaid funds go to worker compensation offer some protection, but Republican senators are pushing for repeal. If you'd like to read more, check out the original report from the Private Equity Stakeholder Project.

Community Catalyst

Local Innovation Worth Spreading: See how local changes are creating ripples of progress nationwide

🦷Dental care arrives at last. Dr. Maxmillian Chambers is opening a specialized dental surgical center in Imperial County after receiving a $5 million state grant to serve patients with developmental disabilities. This center is part of a larger $47.2 million initiative distributed to 13 dentists and clinics addressing the critical shortage of dental facilities equipped for special needs patients. For families like Martha Rodriguez's who faced rejection due to her Down syndrome, and Nicole Sing's whose parents drove to Mexico for care, this breakthrough means access to essential care without extensive travel. If you would like to read more, check out the original article.