KickCushings

The Conley Cushing’s Disease Fund is committed to rare disease advocacy and supporting those with Cushing’s disease. #KickCushings

[KickCushings @KickCushings]

Witnessing @amyschumer on @FallonTonight I recognized Cushing's. Her disclosure might be the silver lining for Cushing's Disease. Her story, told empathically by @JessicaYellin, can help create awareness. Amy and I are lucky to have the best medical teams. I have Penn Medicine, but many aren’t as fortunate. Even though I created The Conley Cushing’s Disease Fund, I am often reluctant to publicly share my experience and expose my vulnerabilities. Inspired by Amy, I #DareGreatly to raise awareness for this relentless disease. Be your own advocate.(disclaimer: this is point-worthy) #KickCushings

[KickCushings @KickCushings]

@TwitterSupport plz address my multiple inquiries for @MarieConleyHbg

[KickCushings @KickCushings]

FINALLY, @TODAYshow did a piece about Cushing's Disease. I've sent so many emails since 2014. It's a great awareness piece that captures the difficulty of diagnosis & the unchartered journey patients must take. Thank you, @LaVarsovienne for sharing our story. @MarieConleyHbg

[A. Pawlowski @LaVarsovienne]

Even when she ate 600 calories a day, she kept gaining weight -- 115 pounds over six years. Her heart raced, her skin bruised easily and her face would suddenly turn blood red. She felt tired, anxious and depressed.

What was wrong?
https://t.co/OYLE5nIXmU

[KickCushings @KickCushings]

Cushing’s disease was not part of my vocabulary until September 2020. Read a new patient story at https://t.co/Msx4RbfS6X
#kickcushings #RareDisease #PARareDisease

[KickCushings @KickCushings]

Cushing's patients can participate in the @MSKCancerCenter 2022 Pituitary Update. It is a great opportunity to learn more about their disease & the journey one can take after a diagnosis. @CSRFnet will be moderating one of the discussions. It's free.https://t.co/x9wuk8z7uJ

[Rare Disease Day @rarediseaseday]

TODAY is #RareDiseaseDay! 💙💚💜

All over the world, the rare disease community are sharing their colours and demanding equity for people living with a rare disease.

As a global community, we have a powerful voice! 📣

How are you sharing your colours today? 👇👇👇

[National Organization for Rare Disorders (NORD) @RareDiseases]

Today is Rare Disease Day! 🦓

It's time to Show Your Stripes! How are you getting involved? Why is this day important to you? Share you answer on social media using the hashtags #RareDiseaseDay and #ShowYourStripes.

Learn more at: https://t.co/p0g5CEy1W0

[Theodore H. Schwartz MD @TedSchwartz13]

Free registration for lecture on surgical management of Cushing’s Oct 30. @KickCushings @CushingsConnect
@thejns
@neurosurgery
@WorldNeurosurg
@pituitaryorg
@pituitary_org
@NASBSorg
@CNS_update
@EANSonline
@WCMCBrainSpine
@WeillCornell
@nyphospital https://t.co/nk8INBVpD5

[KickCushings @KickCushings]

Rare diseases affect each person and family uniquely. Though not a Cushie, we appreciate this mother’s perspective on caring for her child with a #raredisease via @HuffPost:

https://t.co/t1S1SBLBog

[KickCushings @KickCushings]

I am so grateful @PennMedicine continues to focus on creating awareness for Cushing's Disease for medical professionals & patients. This is free for patients and families. Register here: https://t.co/SR6xjuVRZo
#kickcushings @PARareDisease @MarieConleyHbg

[PA Rare Disease Advisory Council @PARareDisease]

Get to know Council Chair @MarieConleyHbg in this profile by @GlobalGenes! Marie founded @KickCushings to support patients & families with Cushing’s disease + to work with medical professionals & institutions for early diagnosis & research. https://t.co/oADog2z3Jg

[PA Rare Disease Advisory Council @PARareDisease]

This #RareDiseaseDay, you can help us learn more about the #raredisease community throughout the state. If you are a rare patient or a caregiver for a rare patient in PA, please spend a few minutes to take an anonymous survey at https://t.co/ji1jL7EUZA. And please RETWEET!

[Rare Disease Day @rarediseaseday]

Today is #RareDiseaseDay!

There are over 6⃣0⃣0⃣0⃣ rare diseases

🌏 300 million people live with a rare disease accross the world

Rare diseases currently affect 3.5% - 5.9% of the worldwide population👨‍👩‍👧‍👦

Learn more about what is a #raredisease

👉https://t.co/4axpDU3ofy

[PA Rare Disease Advisory Council @PARareDisease]

Thank you to @RareDiseases for including our Chair Marie Conley in today's panel with other #RareDisease Advisory Council leaders to share learnings & accomplishments with rare disease advocates from across the country. For more info on Project RDAC, visit https://t.co/nXQzdcERQa

[PA Rare Disease Advisory Council @PARareDisease]

Our chair, Marie Conley of @KickCushings will represent us at the meeting later this week! We look forward to meeting representatives of new state Councils and continuing to share information with the more established Councils. We are stronger together.

[PA Rare Disease Advisory Council @PARareDisease]

We’re excited to share 2 more books by #raredisease advocates in PA: #ShiftingIntoHighGear by @KyleABryant of @rideATAXIA and A Cushing’s Collection by @MarieConleyHbg of @KickCushings. What a great way to raise awareness & encourage people to #CareAboutRare!

[PA Rare Disease Advisory Council @PARareDisease]

Thank you to @GlobalGenes for profiling our Chair, Marie Conley of @KickCushings! Marie is a tireless #RareDisease advocate. https://t.co/DiUyVMds4M

[PA Rare Disease Advisory Council @PARareDisease]

Why is #RareDisease awareness important? Hear it from Paul:

[KickCushings @KickCushings]

Great news for #raredisease patients! @RareDiseases launched its COVID-19 Critical Relief Program to provide much-needed financial relief that may be utilized to support critical, non-medical needs. Learn more:

https://t.co/ytPF41m0S1

[KickCushings @KickCushings]

A reminder to choose hope this week. #positivethoughts