Weekly Edition - 4.29.25

Controversy Ignites Action. From the heated backlash over a proposed autism registry to an autistic student's powerful rebuke of RFK Jr.'s misguided claims, this week's developments reveal a community fighting for dignity and understanding. Meanwhile, Arizona resolves critical disability funding after months of political standoff, while two brothers prove that cerebral palsy creates no barriers to conquering the grueling Ironman challenge.

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The Big Idea

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

💥 Confusion exploded overnight. What began as a routine NIH presentation has spiraled into a heated controversy over potential tracking of individuals with autism.

On April 21, NIH Director Dr. Jay Bhattacharya unveiled plans for a sweeping "real-world data platform" during a Council meeting. This initiative would merge public agency information with private sector data—including pharmacy records, electronic health files, environmental exposure details, and even readings from personal devices like fitness trackers. The ambitious proposal mentioned creating "national disease registries, including... a new one for autism" to accelerate research efforts.

The Autism Science Foundation immediately sounded alarms about privacy concerns. Their statement acknowledged that registries can provide valuable research insights, but emphasized that the "lack of clarity around how data will be collected, shared, maintained and tested for accuracy raises red flags" for families already anxious about confidentiality.

By April 25, Health and Human Services officials scrambled to clarify their position, telling USA TODAY no autism registry was being created—though they confirmed a $50 million investment in autism research continues. This rapid policy shift underscores the heightened tensions surrounding Health Secretary Robert F. Kennedy Jr.'s controversial pledge to identify autism's cause by September and "eliminate those exposures"—a promise that has deeply divided the neurodivergent community between those embracing their neurological differences and others seeking interventions.

If you would like to read more, check out the original article.

Moments That Matter

Celebrating the everyday victories, breakthrough achievements, and inspiring individuals

🏅 Brothers redefined impossible. Miguel Martins tows, cycles, and pushes his brother Pedro, who has cerebral palsy, through the grueling Ironman triathlon—swimming 3.8km, cycling 180km, and running 42.2km together. Their "Iron Brothers" project has evolved from a personal challenge into Portugal's first special team to complete the extreme endurance event, raising crucial funds for the Association of Cerebral Palsy of Lisbon. This inspirational partnership provides wheelchairs, hygiene equipment, and accessible transportation for families who couldn't otherwise afford them, while proving that with proper support, everyone deserves the opportunity to communicate their basic needs and participate in sports. 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

💵 Standoff ends. Arizona Governor Katie Hobbs has lifted her controversial blanket veto threat after lawmakers reached a compromise on funding for the state's Division of Developmental Disabilities, which supports nearly 60,000 Arizonans with conditions including autism, cerebral palsy, and Down syndrome. The agreement, which Hobbs signed Thursday, includes key policy changes such as a 40-hour weekly cap on paid hours that parents can receive for caring for their children with disabilities. The months-long dispute had centered around Republicans' concerns over Hobbs requesting an additional $13 million beyond her executive budget proposal, with GOP lawmakers pushing for program "guardrails" that were ultimately included in the compromise bill. If you would like to read more, check out the original article.

Community Catalyst

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

👊 Autism isn't a limitation. A passionate high school student with autism has directly challenged Health Secretary Robert F. Kennedy Jr.'s controversial statements comparing autism to an epidemic and claiming autistic individuals cannot work, play sports, or function in daily life. The young writer demonstrates their own reality—juggling college-level courses, working a job, playing team sports, and pursuing a journalism career—as living proof against Kennedy's assertions. The student's powerful response comes after HHS walked back plans for an autism registry, emphasizing that autism isn't something to fear but rather a difference to embrace: "I may not get everything right, but I can adapt like everyone else." If you would like to read more, check out the original article.