“So, the question families are asking is fair: Whatever happened to Right to Try?” Right to Try was a promise. It’s time for the FDA to keep it.

Across this country, mothers of children with rare diseases watch their children lose the milestone moments of childhood: tying their shoes, lifting a fork, climbing a single step. They aren’t asking for miracles. They are asking for more time.

For thousands of families, rare diseases are a daily reality that progressively and irreversibly steal abilities from children one by one, and don’t give them back. What these diseases share is particularly cruel: few or no approved treatments, and a risk that some of these therapies could be taken away.

Families continue to fight.

Earlier this year, more than 100 families carried a coffin to the Food and Drug Administration’s doorstep in a symbolic funeral march, protesting regulatory delays affecting children with Sanfilippo, Hunter and Hurler syndromes. Three therapies developed for Hunter syndrome have been denied or delayed, with families arguing that the FDA’s resistance to accelerated approval pathways is costing children time they cannot get back. Their message is simple: When time is measured in lost function, delays have consequences.

In the country of Georgia, at the intersection of Europe and Asia, families of boys with Duchenne muscular dystrophy have spent 500 days and nights protesting in the streets, demanding access to these drugs. We are watching, and we want the FDA to know: if it comes to it, American moms will show up too.

Boys with Duchenne muscular dystrophy are missing a section of DNA, and without it, the body can’t make the protein it needs. Exon-skipping therapies teach the body to work around the damaged region, like skipping a broken step on a staircase, so it can begin producing dystrophin again. Not all of it, but some. This slows the damage and buys these boys time. Time to play, grow, learn, and be with their families.

These Duchenne muscular dystrophy drugs are available today, and the FDA has an opportunity to consider the full body of evidence supporting their continued use. Several have been used for more than a decade. One has data from more than 1,800 children. One drug pushed back the need for a breathing machine by seven and a half years. Another slowed the loss of lung function. These are not small things.

Yet the FDA is holding back. One clinical trial didn’t meet a specific endpoint – how fast kids could climb four stairs. We understand the need for standards. We also know what these families have lived. We’re asking the people making this decision to look at the whole picture, not just one number on one page.

President Trump understood this reality when he championed Right to Try, and Congress backed him up. The Right to Try Act, signed in May 2018, made a clear promise: the federal government would not stand between a terminally ill patient and an investigational therapy when all other options were exhausted. Under the law, eligible patients can request access to investigational drugs directly from manufacturers. Those manufacturers are shielded from liability when acting in good faith. The FDA is prohibited from using Right to Try data to delay or deny approval. And insurers cannot be penalized for covering a patient who pursues it.

These provisions were a direct rebuke to bureaucratic delay. They recognized that for a child losing function by the day, waiting for more data is not a neutral act. It is a decision with consequences.

So, the question families are asking is fair: Whatever happened to Right to Try?

That law’s promise; that patients deserve access, that families deserve agency, that government should not be the last obstacle between a sick child and a treatment that might help, should be animating every FDA decision on rare and progressive disease. Yet here we are, watching families march with coffins while children deteriorate and regulators debate procedural thresholds.

A mother is not thinking about a four-stair speed test. A mother is thinking about whether her son will be able to feed himself next year, or whether he will still be walking at his next birthday.

Mothers make decisions based on what their children need. A child who gets one more year of walking, one more year of independence, does not benefit from something statistically insignificant. He got more out of his life. And to his mother, there is nothing more significant than that.

Right to Try was a promise. It’s time for the FDA to keep it.

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Article by Raquel Mitchell
Deputy Director of Moms for America Action.
Article original written for InsideSources.com and published by DC Journal

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“I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead.”

Those words were written by Ronald Reagan in a November 5, 1994 letter announcing his Alzheimer’s diagnosis. Equally as significant was the desire to spare his beloved wife Nancy from the difficulty she would experience as the spouse of an Alzheimer’s victim.

Thirty-two years later, the need to fight this debilitating disease remains just as strong. In recent polling by Fabrizio Ward, 92% of female voters said Alzheimer’s is a serious problem and 82% are more likely to support a candidate that makes combating this disease a priority. The most astounding part is that 61% of female voters can point to Alzheimer’s affecting family or friends.

While researchers, drugmakers, and doctors are doing their part to better understand this disease, improve the ability to live with it, and ultimately eliminate it, neither the Centers for Medicare & Medicaid Services (CMS) nor insurance companies should stand in the way of the availability of new therapies.

As a staunch believer in the free marketplace, my first thought is not to ask for candidates to support mandates to force insurance companies to cover new therapies. However, I do believe that insurers and government can work together to develop strategies – such as tax benefits to allow patients to control their care, faster coverage decisions, fewer bureaucratic roadblocks, and of course, Right-to-Try – that can provide greater options for both patients and caregivers. After all, the data shows that if insurers are not receptive to voluntary measures, many voters will become receptive to candidates who offer prescriptive mandates in their campaign platforms.

The same goes for CMS, which can no longer arbitrarily refuse coverage of new Alzheimer’s treatments. The same openness, transparency, and enthusiasm sought from private insurers must also characterize CMS because voters will no longer accept an agency that actively blocks the ability of our loved ones to live out their latter years with dignity.

In short, both insurers and CMS must get out of the way and make more Alzheimer’s therapies available or voters will make them pay.

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Media Contact:
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WASHINGTON, D.C. – Today, Moms for America Action (MFA Action), the nation’s largest and fastest-growing conservative moms organization, announced that combating illegal Chinese vapes will be a top advocacy priority for 2026, as the organization mobilizes moms nationwide to demand stronger enforcement, accountability, and protections for America’s children.

The announcement comes as the Trump Administration intensifies its crackdown on illegal Chinese-manufactured vape products that continue to flood U.S. markets despite federal bans and safety concerns.

“For moms, this is personal,” said Emily Stack, Executive Director of Moms for America Action. “Illegal Chinese vapes are showing up in our schools, our neighborhoods, and our homes every single day. In 2026, Moms for America Action is making this fight a priority; to stop illegal Chinese vapes from getting into our country and targeting our kids.”

As part of its 2026 agenda, Moms for America Action will mobilize moms to advocate for stronger enforcement, accountability for foreign manufacturers, and protections for children and families.

Many illegal Chinese vapes are deliberately designed to appeal to children, featuring candy flavors disguised as everyday items such as school supplies or gaming devices.

“This is not an accident; it’s by design,” Stack continued. “China has built a billion-dollar industry on addicting American kids to illegal products that have no place in our communities. Moms are fed up, and we fully support the Trump Administration’s aggressive actions to shut down this black market.”

Alarming Facts About Illegal Chinese Vapes

• A single Chinese vape can contain the same amount of nicotine as 590 cigarettes.
• In 2024, more than 1.6 million U.S. middle and high school students vaped and the top 3 brands used were from China.
• There are no Chinese vapes on the FDA authorized e-cigarette list.

Despite being illegal, these products have continued to circulate through online sellers and unregulated smoke shops, until recently.

In 2025, the Trump Administration launched a sweeping crackdown, seizing $86.5 million in illegal e-cigarettes in Chicago, the largest bust of its kind, followed by the DEA’s nationwide Operation Vape Trail targeting illegal vape sales.

“President Trump’s actions send a clear message: profiting off the addiction of our children will not be tolerated,” Stack said. “Moms want safe communities, honest enforcement of the law, and leaders who put American families first. We are committed to making sure these dangerous products are removed from our schools and neighborhoods for good.”

About Moms for America Action
Moms for America Action is a national grassroots organization dedicated to empowering moms to protect children, preserve the family, and defend American values through education, advocacy, and civic engagement.

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For more information or questions, please reach out to:
Media Contact:
Press Team
Moms for America Action