Kara Hinkley

Mom | Veteran | Public Policy Expert | Patient Advocate
*opinions are own* #thefutureisaccessible 🏀🌈🧗‍♀️⚖️⚽️🚵‍♀️

[The Rare Disease Company Coalition @RareCoalition]

This #RareDiseaseWeek, we’re spotlighting Soleno Therapeutics and their work to advance care for Americans living with Prader-Willi syndrome (PWS).

For communities like PWS, progress depends on protecting and strengthening the rare disease incentive ecosystem.

#OneRareVoice

[Kara Hinkley @BraveGals]

Enjoyed a chilly but productive day on The Hill talking about the importance of ODTC, PRV, ORPHAN Cures Act, Accelerating Kids’ Access to Care Act, and the EPIC Act.
#rarediseaseadvocates

[Rare & Ready Coalition @rare_ready]

What Are PDABs? Prescription Drug Affordability Boards set drug price caps—but do they help patients? Find out how these policies could limit access to rare disease therapies. Join the discussion on Mar 6! Register: https://t.co/NHfyN1NSEE. #RareandReady #PDAB

[Kara Hinkley @BraveGals]

Reauthorization of PRV is critical to thousands of children living with rare diseases. Call and email your members of Congress and ask that they support the end of year package now.

[EveryLife Foundation @EveryLifeOrg]

We stand with 18-year-old rare disease advocate Jake Juip: Pediatric rare disease research needs more incentives, not less. The #PRV program expires next week – without renewal, we lose a vital tool. Act now: https://t.co/FgTp0fQabx @CureFA_org

[Kara Hinkley @BraveGals]

@AudreTaughtMe2 @alsassociation Fantastic presentation and panel, Chelsey! Thanks for all you do!

[SportsCenter @SportsCenter]

A huge ovation for Steve Gleason as he accepts the Arthur Ashe Courage Award for his contributions to ALS awareness 👏

[Drew Wilder @DrewWilderTV]

The thorn in his side, watches over his shoulder. VA St. Sen. Louise Lucas looking on as Governor Youngkin expresses his anger that the legislature has killed the Monumental Move. Lucas telling us earlier she’s proud she killed the arena deal. @nbcwashington

[Governor Kay Ivey @GovernorKayIvey]

Today, I offered my support to the Kerry and Gary Challenge to Defeat ALS.

ALS is a devastating disease and affects many families across our great state.

This is a cause worth fighting for, and I urge all Alabamians to join us in this challenge. #alpolitics

[Kara Hinkley @BraveGals]

As your constituent & someone impacted by #ALS, I urge @senchuckedwards to increase #ALSResearch in the FY2024 budget: https://t.co/5UKsxgWB4j

[Kara Hinkley @BraveGals]

As your constituent & someone impacted by #ALS, I urge @senthomtillis to increase #ALSResearch in the FY2024 budget: https://t.co/5UKsxgWB4j

[Kara Hinkley @BraveGals]

As your constituent & someone impacted by #ALS, I urge @RepTedBudd to increase #ALSResearch in the FY2024 budget: https://t.co/5UKsxgWB4j

[The ALS Association @alsassociation]

Thank you @RepJasonCrow and @chairmang for prioritizing ALS prevention research in our military who are more likely to develop ALS. More prevention research could lead to better treatments and ultimately a cure for ALS.

[Kara Hinkley @BraveGals]

Thank you for your support @RepJasonCrow !!

[Rep. Jason Crow @RepJasonCrow]

ALS is a terrible disease, and servicemembers and veterans are disproportionately affected.

Led a successful bipartisan effort with @chairmang to fund the CDC's research into the links between ALS and our military as we strive towards a cure. https://t.co/t2JtwzMBKJ

[Kara Hinkley @BraveGals]

Enjoyed connecting with the wonderful Palmetto Health Collective last week to talk building patient power across SC!

[Palmetto Health Collective @PalmettoHealth]

The PHC was fortunate to have national and SC based patient advocacy groups listen to presentations around Access to Health Care yesterday. Thank you to all that attended. @HemoOfsc @Acscansc @alsassociation @mssociety @AmDiabetesAssn @AmericanHeartSC @ClosingtheGap4u

[Kara Hinkley @BraveGals]

Appreciate @SenSchumer taking the time to meet with #ALS #Advocates today! ❤️

[The ALS Association @alsassociation]

Thank you @SenSchumer for meeting with #ALS advocates today on federal research funding during a very busy time.

#FundALSResearch #ALSAdvocacy

[Brooke Eby @limpbroozkit]

Explaining The Levity Project. All choppy camera work blamed on my inability to talk about this without getting choked up ❤️ #als #alstdi #salesforce #coworkers #thelevityproject

[Kara Hinkley @BraveGals]

As your constituent & someone impacted by #ALS, I urge @senchuckedwards to increase #ALSResearch in the FY2024 budget: https://t.co/5UKsxgWB4j

[Kara Hinkley @BraveGals]

As your constituent & someone impacted by #ALS, I urge @senthomtillis to increase #ALSResearch in the FY2024 budget: https://t.co/5UKsxgWB4j

[Kara Hinkley @BraveGals]

As your constituent & someone impacted by #ALS, I urge @RepTedBudd to increase #ALSResearch in the FY2024 budget: https://t.co/5UKsxgWB4j