Para Z-Aid LLC

02/18/2026

There was a time when I felt like my body was working against me.

Living with hEDS, POTS, and dysautonomia has changed my life in ways I never expected. The unpredictable flare days. The exhaustion that doesn’t always make sense to others. The invisible battles are happening beneath the surface.

But here’s what I’ve learned…

These diagnoses don’t define me. They’ve refined me.

They’ve taught me to listen to my body instead of fighting it.
They’ve taught me that rest is productive.
They’ve shown me strength I didn’t know I had.

Turning a new leaf for me didn’t mean becoming someone different; it meant becoming more in tune with who I already am. Choosing habits that support my health. Fueling my body with intention. Protecting my peace. Building resilience one day at a time.

My journey navigating life with hEDS, POTS, and dysautonomia hasn’t made me weaker; it’s made me a stronger, more compassionate, more determined version of myself.

This is what growth looks like for me.
This is what strength looks like for me.
And I’m just getting started. 💛



Photocredit by

02/03/2026

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Celebrating a dysautonomia advocacy win! Thanks to advocates who were involved in our 2025 Dysautonomia Advocacy Day, and a year of follow up work by our staff and board members, this afternoon Congress adopted legislation calling on federal agencies to support MORE POTS AND OTHER DYSAUTONOMIA RESEARCH AND CLINICIAN EDUCATION! We are so grateful to everyone who made this happen by getting involved with dysautonomia advocacy!

Summary of Key Provisions:

🔹Congress recognized the lack of access to autonomic specialists and the long diagnostic delays experienced by our patient community, and encouraged the Center for Disease Control to inform the public about POTS and other forms of dysautonomia, and develop an education program for healthcare providers to increase access to care for POTS and other dysautonomia patients. (We are already in touch with CDC about this, in anticipation of this bill passing!)

🔹 Congress urged the CDC to spend funds from its Chronic Disease Education and Awareness Program to improve public and professional awareness of POTS and similar forms of dysautonomia.

🔹 Congress expressed concerned that the NIH has not prioritized studying treatments for syndromes that exist in Long COVID, like POTS. Congress urged NIH re rebalance its research portfolio to prioritize clinical trials that target POTS, and related symptoms.

🔹Congress urged the Advanced Research Projects Agency for Health (ARPA-H) to invest in Long COVID research that includes dysautonomia and POTS.

🔹 Congress urged ARPA-H to prioritize support for research and development programs that enable clinical trials for symptom complexes associated with Long COVID, including POTS.

There are also several provisions in the bill supporting dysautonomia related conditions like ME/CFS, Lyme, Long COVID and more.

You can read the language in detail here. This is the Senate LHHS Bill Report, which is incorporated into the House and Senate FY2026 LHHS Appropriations bill:
https://www.appropriations.senate.gov/imo/media/doc/fy26_lhhs_senate_report.pdf

The President is expected to sign the FY2026 LHHS Appropriations Bill sometime this week.

While it's important to celebrate a win, we still have a whole lot of work to do on Capitol Hill to advocate for our community. Dysautonomia Advocacy Week 2026 is coming up in early March, and this year's advocacy week is all virtual - you can advocate from your couch! We encourage the entire dysautonomia community and our allies to GET INVOLVED! Your voice matters and can help us obtain even more legislation benefitting our patient community in next year's appropriations bill! Sign up for our March 2026 Dysautonomia Advocacy Week at bit.ly/DysAdvocacyWeek2026.

If you'd like to support our year-round advocacy efforts, please consider making a contribution at CureDys.org

01/29/2026

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Important New POTS Research Findings:
https://www.biorxiv.org/content/10.64898/2025.12.29.696828v1
We’re proud to share the results of a new research study funded by Standing Up to POTS — made possible by the generosity of our donors 💙

This study by Dr. Resia Pretorius, Dr. Satish Raj and colleagues explored a novel biological pathway that may help explain why POTS symptoms occur and how POTS may differ from Long COVID at a molecular level.

🔬 What did the researchers study?

They examined tiny, abnormal protein clumps in the blood called fibrinaloid microclots. These microclots can interfere with blood flow in the smallest blood vessels and may contribute to reduced oxygen delivery to tissues.

🧪 What did they find?

The researchers discovered that:

• People with pre-COVID POTS had distinct molecular changes within these microclots

• These changes were different from those seen in Long COVID, and also different from Long COVID with POTS

• This suggests POTS may have its own biological signature, rather than being solely a nervous-system disorder

🧠 Why does this matter?

If confirmed in future studies, these findings could:

• Improve understanding of the biological mechanisms behind POTS

• Help guide the development of objective tests or biomarkers

• Open the door to new treatment strategies that go beyond symptom management

This research builds on earlier work proposing that microcirculatory dysfunction may play a role in POTS (see https://www.mdpi.com/2075-4426/14/2/170)— and begins to test that idea with real molecular data.

⚠️ Important note:

This is a pre-print still awaiting peer review, and does not yet change clinical care. More studies are needed to confirm and expand these findings. But this is the kind of foundational work needed to move the field forward.

💙 We are deeply grateful to our donors.

This study — and many others — would not be possible without you. Your support allows Standing Up to POTS to fund innovative research aimed at better answers, better treatments, and a better future for people living with POTS. To see other research we’ve funded, visit https://www.standinguptopots.org/research-fund/funded-research-studies

01/27/2026

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