Living with Hypokalemic Periodic Paralysis

08/22/2025

Tips for being sick and proactive

Check out RareAdvocateJamie’s video.

08/14/2025

I’m excited to announce that I’ve completed my Patient Leader
Certification at the . The program covers the best
practices in powerful storytelling, meaningful engagement, and responsible patient
leadership. I’m looking forward to taking the next steps in my Patient Leader journey
and making a real impact in the lives of others!

Let’s go for rare disease!!!

08/06/2025

Putting it on canvas! Almost Done!

08/05/2025

https://track.pstmrk.it/3s/www.spotfund.com%2Fstory%2F01647b37-638d-4ec0-b7c5-cec91c331a5e/aBUu/Jym-AQ/AQ/efec8c32-01ef-4e61-b577-270441cd5fdb/1/ERkqpukiZ1

CLICK THE LINK TO SUPPORT OUR TRIP
REACH OUT TO ME OR THE PAF TO TELL US HOW HEALTH HURTS FINANCES!!

07/30/2025

06/08/2025

Join the NPAF on June 11th
For a conversation about Finacial Hardhip Hurts Health
https://www.npaf.org/events/policy-consortium-financial-hardship-hurts-health/

06/07/2025

Join me and the NNational Patient Advocate FoundationOn June 11th For a conversation on how Financial Hardship Hurts Health
This is for patients and caregivers
June 11th 3-4pm ET
FREE
Register Now. https://www.npaf.org/events/policy-consortium-financial-hardship-hurts-health/

05/29/2025

Got 40 classes down with Bold! In 7 weeks I have improved my balance, daily rouince, and strength. The live classes are fun, and I can choose exactly how and when I work out. I am so thankful my insurance is covering this for me. You may be eligible too! Maybe we will be in the same live classes soon!

Blessed to move!

05/16/2025

We had ourselves a day ❤️ and Amazing nurses.

05/15/2025

The Road to Diagnosis.. interpretative art. I would love feedback. Can you relate? How?

05/15/2025

Because of I received life saving medication, that came with a support team. that team came with a patient peer that helped me train my service dog. He helps me stay safe. Medicaid saves my life