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Where to Donate to Support PSC Clinical Trials

Donate to the Children's PSC Foundation to support PSC and oral vancomycin research

We need clinical trials to find a cure for PSC. The Children’s PSC Foundation is funding some exciting clinical trials, including several that are focused on oral vancomycin. The Children’s PSC Foundation is currently the only PSC organization to proactively support and fund oral vancomycin clinical trials.

So, if you’re looking for a PSC non-profit to donate to, support the Children’s PSC Foundation in their hope-giving proactive research.

Below are some of the trials that your generous donations will help fund!

1. A Double Blind Placebo-Controlled Trial of Oral Vancomycin for PSC

This trial is led by Dr. Marco Carbone at the University of Milano-Bicocca in Milan, Italy. The goal of this trial is to confirm the effectiveness of oral vancomycin in PSC and to more deeply understand exactly what oral vancomycin does inside the gut to make patients better.

(As I write this in February 2023, the trial is actively recruiting. Be sure to check ClinicalTrials.gov for the most accurate status.)

The most exciting part of this trial is the genome sequencing. This will analyze the changes in the patients’ gut microbiome before, during and after treatment. This information is critical to understanding why oral vancomycin works.

Unfortunately, the genome sequencing and microbiome analysis is not yet funded. The trial needs more funding in order to do this vital sequencing and analysis.

2. A Prospective Clinical Trial of Hymecromone for PSC

This trial is led by Dr. Leina Alribadi and Dr. Aparna Goel at Stanford, California, and will be givng patients a combination dose of oral vancomycin and Hymecromone.

Why? Because some patients on oral vancomycin still experience inflammation. The hope is that, when combined with oral vancomycin, Hymecromone will modulate the immune system to reduce potential long-term issues, such as inflammation or fibrosis.

(As I write this in February 2023, the trial is actively recruiting. Be sure to check ClinicalTrials.gov for the most accurate status.)

Unfortunately, more funding is needed to support follow-up studies, which are needed to provide a deeper insight into the science behind Hymecromone and oral vancomycin combination therapy for PSC.

3. A Pilot Clinical Trial of Microbiota Transplant Therapy for PSC

We know that PSC is at least partially caused by an imbalance of the gut microbiome. There are research papers showing that bad bacteria crosses from the gut to liver, possibly progressing PSC.

If the gut microbiome can be rebalanced, perhaps PSC will stop progressing. That’s what this trial is going to look at.

Patients in this trial will undergo a Microbiota Transplant Therapy (MTT). MTT is when the patient swallows a capsule full of bacteria from the stool of healthy donors. The hope is that this will rebalance the bacteria in the patient’s gut microbiome.

(As I write this in February 2023, I do not have info on their recruiting status. Be sure to check ClinicalTrials.gov for the most accurate status.)

MTT is an exciting new area of research for PSC, which is why they’re starting out with a quick pilot trial.

Unfortunately, this trial needs more funds to fully explore this new area.

4. Other Potential Areas of Interest the Children’s PSC Foundation May Support

The Children’s PSC Foundation is always looking to further PSC research. Below are four additional areas they may explore in the future:

  1. Using a non-invasive biotech device to further understand the gut microbiome of PSC patients.
  2. Creating a massive database to collect critical information about patients taking oral vancomycin, like brand and dose.
  3. The combination therapy of oral vancomycin and MTT.
  4. Helping recruit pediatric patients for this NIH observational study.

Make a Difference in PSC Research

To find a cure for PSC—and to understand exactly why oral vancomycin helps patients feel better—we need to support ongoing research. Whether we donate or physically participate in the trials themselves, it’s so critical that we get involved.

If you’re looking to support PSC research (and oral vancomycin research, in particular), please consider donating to the Children’s PSC Foundation.

I’ve spend many of my volunteered hours advocating side-by-side with the Children’s PSC Foundation, and can confidently say that they are the most caring, proactive, PSC non-profit dedicated to the community.

If you have any questions about these exciting clinical trials, please contact the Children’s PSC Foundation or view the trials on ClinicalTrials.gov.

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