Lola Eubanks

Sous chef 🔪 & Crazy Cat Lady 😻 Fighting for #RightsForAll

[Lola Eubanks @Eu444ic]

$SRPT
Elevidys remains the only one time gene therapy approved for Duchenne. Most other options require ongoing treatment. Hoping more families who qualify can actually reach it while the window is still open.
#DMD #DMDawareness

[Lola Eubanks @Eu444ic]

7 people losing their lives is heartbreaking... I really hope this pushes more attention toward prevention, early treatment, and better public health reporting. People deserve to know what risks are around them

[FactPost @factpostnews]

7 people have died after being infected with Vibrio vulnificus, a flesh-eating bacteria that contaminates water and seafood.

The Trump administration cut mandatory public health reporting of Vibrio vulnificus last year.

[RyuStrong_DMD @RyuStrong_DMD]

Ryu was brought to tears of gratitude receiving a package from his favorite team of all time, @Eagles. We are grateful for the gear and a beautiful message of encouragement and support. #FlyEaglesFly

[United Nations @UN]

All girls and women must be able to exercise their full human rights without fear of violence or persecution.

Each of us can make a difference by speaking up against violence, calling out sexual harassment, challenging stereotypes & more.

via @UN_Women

[Lola Eubanks @Eu444ic]

$SRPT
@US_FDA this is what your restriction actually looks like. Ryu was already in a wheelchair when you limited Elevidys. One year on and his disease kept progressing while access stayed closed. How many more kids get left behind?

[RyuStrong_DMD @RyuStrong_DMD]

"A year ago, I was exploring Elevidys as a treatment that might help him live a longer, fuller life. Then, almost overnight, that hope disappeared. The FDA first halted use of the therapy entirely before restoring access only for boys who could still walk. Ryu, who already uses a wheelchair, was left behind." 

From my new piece at @theblaze.

[Lola Eubanks @Eu444ic]

$SRPT
In Bauru, brothers Artur and Raul both have Duchenne and are still waiting on Elevidys. Their family has been fighting for access ever since. These kids deserve a real chance. Hope Elevidys can reach more children who need it.
https://t.co/Wn61yZyCjj

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

Hey @US_FDA...
This video should be part of your risk benefit decision re @capricor's #deramiocel.

People without terminal rare diseases have NO comprehension about what it takes to live each and every day.

Consider the risk of a Type II error. If FDA does nothing, the toll of #Duchenne gets worse. If you grant accelerated approval, science wins and her son gets a chance to preserve his upper limb function and maybe heart function too.

If this were your son, you would want that chance.

@FDA_KyleD @FDACBER @FDACommissioner
@POTUS @SusieWiles47 @SenRonJohnson @SecKennedy

#EndDuchenne #EndDMD
#DrugsInBodies

[United Nations @UN]

The UN emblem is a symbol of hope, peace & unity around the world.

For eight decades, the United Nations has worked on behalf of humanity.

Today, we continue working to advance peace, dignity and equality for all on a healthy planet.

https://t.co/wu4Hc0dzxK

[Lola Eubanks @Eu444ic]

Seems like the confirmation process did exactly what it's designed to do. Isn't that the takeaway here?

[ABC News @ABC]

Under pressure from two Republican senators blocking his confirmation as the next attorney general, Todd Blanche said he is formally rescinding his establishment of President Trump's so-called "Anti-Weaponization Fund."

ABC News' Jonathan Karl reports. https://t.co/dTQwmg77vb

[Lola Eubanks @Eu444ic]

$SRPT
It's hard not to feel angry reading stories like this. Duchenne doesn't wait and neither should families searching for hope! Every child deserves timely, evidence based decisions, because time is something these families simply don't have. @US_FDA act now!
@RobertKennedyJr

[RyuStrong_DMD @RyuStrong_DMD]

Rare disease patients' lives are at risk when the @US_FDA delays treatment approvals.

We will keep sharing our story because it matters. Childrens' lives matter. No family should watch their loved one die waiting for treatments.

[Harvard Health @HarvardHealth]

Here’s some good news if you’re a fast walker — and an incentive to pick up the pace if you’re not: findings from a study published July 14, 2026, in Neurology suggest that older adults who maintain a brisk natural walking pace into their 80s and beyond may be protecting their brains. #HarvardHealth

https://t.co/AxLmq4O4B6

[Lola Eubanks @Eu444ic]

@TODAYshow One thing I've learned is that skin cancer doesn't always show up where you'd expect. It's worth checking places like your scalp, ears, feet, and under your nails too, not just the spots that get the most sun.

[Christina D @Christina4HD]

Thank you for sharing these families’ devastating stories.

It is my hope that @FDA_KyleD and @US_FDA hear them and take action. Families should not have to fight for their loved ones’ lives against their own government. Government should be relieving their burden, not adding to it.

Put yourself in the shoes of these families for even a moment. You would quickly realize there are serious problems with how patients access experimental therapies.

Rare disease families do not need more red tape. They need access. They deserve the right to make informed decisions with their physicians when the alternative is a fatal disease with no approved treatments or disease modifying therapies.

What is the Right to Try if almost no one can actually try? That is not compassionate care. It is a system that offers hope on paper while leaving too many families without meaningful access.

As medical innovation accelerates, the FDA must evolve with the science. Rare disease families cannot afford a regulatory system that moves more slowly than their disease progresses.

Rare disease families deserve urgency, decency, respect, and access. Time is the one thing they can never get back.

[ABC News @ABC]

Sen. Mitch McConnell's office issued a statement from the senator on Monday saying that he will miss an upcoming Kentucky political event in order to continue his rehabilitation following a June 14 fall that left him hospitalized.

Read more: https://t.co/pqbJReVANC

[Lola Eubanks @Eu444ic]

A 14yr old with Duchenne can’t get $SRPT's Elevidys just because he’s in a wheelchair.
A Huntington’s patient deteriorates while bureaucracy moves slowly.
What good is “Right to Try” if almost no one can actually try? @US_FDA rare disease patients are still blocked by FDA rules.

[Ericka Andersen | Writer @ErickaAndersen]

What happened with "right to try?" legislation?

It sounded *great* -- but turns out, few families have truly benefitted.

And for those with rare diseases, many have been BLOCKED thanks to current @US_FDA standards.

Now that @MartyMakary is gone, they want @POTUS to make a way -- and TIME is something they don't have.

Two stories will break your heart: https://t.co/AXTF11cmEJ

[ABC News @ABC]

President Trump met with top advisers behind closed doors at the White House to discuss his options on Iran, including the possibility of significantly expanding military action against the country, sources say.

ABC News' @MattRiversABC has the latest: https://t.co/KYuys2juRr

[United Nations @UN]

Women and girls of African descent face multiple forms of discrimination.

Despite these challenges, they continue to rise & lead. Greater efforts are needed to support & empower them.

Saturday is the Int'l Day of Women and Girls of African Descent.

https://t.co/aqNjouUxxn

[Lola Eubanks @Eu444ic]

@washingtonpost The less information that's shared, the more room there is for speculation. Clear communication is usually better than letting rumors fill the gap.

[Mayor Zohran Kwame Mamdani @NYCMayor]

I don’t know who needs to hear this, but it’s illegal for landlords to:

- Lock you out or evict you without a court order.

- Shut off your heat, hot water, electricity, or other essential services to force you out of your home.

- Retaliate against you for reporting unsafe conditions or exercising your tenant rights.

- Leave serious health and safety hazards, like mold, unrepaired.

- Discriminate against you because of your race, disability, or other protected characteristics.

[Lola Eubanks @Eu444ic]

@MorePerfectUS Foreign policy is rarely as simple as "good" or "bad". The long term impact of agreements like this usually comes down to execution, accountability, and whether they advance US strategic interests.