Awareness, fundraisers, Charity status, and more!

Written By Ruben

Intro

It has been some time since our last official update. We want to start giving more regular updates now to keep the community informed about our awareness-raising and research initiatives.

Charity status

Our charity was officially registered with the ACNC on April 26, 2023, after a two-month wait. This registration provides our organization with increased credibility, enabling us to raise funds and offer tax benefits for research and awareness initiatives.

Next, our plan is to register as a charitable organization in the following countries:

  • UK

  • Germany

  • USA

Awareness: Articles, TV feature and podcast

There has been significant progress in raising awareness about PSSD in recent months. We are approaching a tipping point where the issue is gaining more attention. Antidepressants are being discussed more openly, and an increasing number of journalists are becoming interested in covering the topic of PSSD. We are optimistic that the upcoming weeks and months will bring further advancements in awareness.

Articles we were involved in that have come out so far

We have reached out to various newspapers and journalists, and as a result, we have successfully facilitated the publication of the following articles:

For media updates, make sure to checkout our media page here.

Upcoming articles: The Telegraph, the guardian, the epoch times and The bbc

We have several articles lined up for release in prominent newspapers. Here are a few that you can look forward to:

  • For The Epoch Times, our volunteer Simon has shared his personal story on PSSD. (Released today)

  • For The Telegraph, our volunteer Simon has shared his personal story on PSSD and antidepressants. (Slated to be released within the next 2 weeks)

  • For The Guardian, several sufferers will share their stories on PSSD. (ETA unknown)

  • For The BBC, a sufferer will be interviewed to discuss his experience with PSSD. (ETA not known)

Upcoming episode with a popular podcast host

With the assistance of a sufferer outside our network, we have successfully arranged a podcast episode featuring a prominent figure with a large audience. The episode will focus on PSSD and will include Dr. Healy and Emily from PSSD Canada as guests.

At this time, we are unable to disclose the identity of the host, but it is scheduled to take place in August.

BBC Panorama episode

On June 19th at 8:00 pm UK time, the BBC will air an investigative documentary on antidepressants. This episode will shortly delve into the issue of PSSD, which was brought to their attention through our outreach efforts. The BBC has conducted interviews with members of the PSSD Network community and has requested video materials, including patient videos, from us. Both the PSSD Network and the PSSD community will be featured in this episode of Panorama.

Find out more details on the episode, here.

Website traffic

We have reached peak levels of website traffic that we have never achieved before. Over a year into our launch, we had around 3,000 visitors per month. Now, we are reaching numbers in the 7,000s, which further indicates that we are effectively raising awareness.

SOCIAL MEDIA awareness

In the past 3 months, our Twitter account @PSSDNetwork has gained over 1,100 new followers, bringing our current follower count to 1,704. Through Twitter, we have been able to establish connections with journalists and medical professionals, raising awareness and generating interest in PSSD.

We have achieved significant success with several of our tweets, with one of our more recent ones garnering over 44,000 views.

We will maintain our active presence on social media and strive to connect with as many individuals as possible. We firmly believe that it is only a matter of time until our efforts gain significant momentum.

Networking

Several of our volunteers have taken the initiative to meet with renowned medical professionals and raise awareness about the issue of PSSD. One notable example is our volunteer Rosie, who personally met with Dr. Aseem Malhotra and informed him about the PSSD issue. Dr. Malhotra now follows us on our Twitter account following the interaction.

Each individual within the PSSD community plays a vital role in expediting awareness and research on PSSD. We strongly encourage everyone who is capable to step forward and raise their voice!

Research, fundraisers and scientific advisor

Dr. Antonei B. Csoka

We are thrilled to introduce our scientific advisor, Dr. Antonei B. Csoka. Dr. Csoka has been engaged with the PSSD community since 2004 and is presently conducting research on PSSD and PFS (Post-Finasteride Syndrome).

With the help of Dr. Csoka's expertise, we aim to find new research opportunities, secure grant funding, and explore potential collaborations with other researchers.

Read more about Dr. Csoka and his experience as a researcher here.

Research updates and research fundraiser

We’ve decided to partake in raising funds for research as we are now a registered charity organization.

For the time being, we will focus on providing support to Dr. Melcangi at the University of Milan. We recently had a conference call with Dr. Melcangi, who shared updates on his ongoing research. Despite having numerous ideas for PSSD research, Dr. Melcangi is facing significant funding constraints, which is hindering the progress of his work.

In addition to our support for Dr. Melcangi's research, we are actively seeking new research opportunities to advance the understanding of PSSD.

Dr Melcangi has disclosed that he and his team are looking into the following:

  • Identification of possible genes altered in the hypothalamus (i.e., the brain region more important for neuroendocrine control). To do that, we are using mRNA sequencing analysis (i.e., an innovative analysis that uses next-generation sequencing to reveal the presence and quantity of differentially expressed mRNA in a biological sample) in male rats treated with paroxetine. The effect of this SSRI will be explored after subchronic treatment and during withdrawal. We are conducting the same analysis in animals treated with finasteride, so it will be interesting to verify whether common genes are affected in PSSD and PFS.

  • Morphology of peripheral nerves, myelination process, and intraepidermal nerve fiber density (Small Fiber Neuropathy). Indeed, PSSD patients report genital numbness or paresthesia, suggesting peripheral neuropathy. In this context, it is important to highlight that we have demonstrated that PFS patients show peripheral neuropathy (Melcangi R.C. et al., J Steroid Biochem Mol Biol 2017).

  • Many clinical endpoints and reliable biomarkers are missing when considering PSSD. Hence, we aim to investigate the potential role of MicroRNAs in the PSSD experimental model as a biomarker for PSSD. MicroRNAs are a class of small, non-coding RNAs that regulate gene expression. These molecules possess the necessary characteristics to be considered ideal biomarkers, including accessibility, high specificity, and sensitivity. MicroRNAs are already utilized as biomarkers in various cancer types, cardiovascular diseases, sepsis, and nervous system disorders. Therefore, evaluating their role in the PSSD experimental model will provide a proof of concept for expanding their exploration in clinical settings.

  • In our ongoing exploration to understand the potential common pathways between Post-Finasteride Syndrome (PFS) and PSSD, we made an important discovery. Our recent data (Giatti S. et al., J. Mol. Struct., 2022) confirms that paroxetine, similar to finasteride, has the ability to inhibit phenylethanolamine N-methyltransferase (PNMT), the key enzyme involved in the production of the stress hormone epinephrine. This finding builds upon our previous observations (Giatti S. et al., J. Med. Chem. 2021) in a post-finasteride experimental model, which demonstrated finasteride's interaction with off-target proteins.

    The significance of this discovery lies in the suggestion that the research conducted on PFS may offer valuable insights into PSSD and vice versa. We believe this is a crucial development as it indicates a potential overlap in pathways between these two conditions. In light of these findings, we are now investigating whether paroxetine's interaction with PNMT is unique to this particular medication or if other SSRIs possess similar capabilities.

  • We aim to investigate the potential brain pathways leading to sexual dysfunction. In rodent experimental models, we will assess male sexual motivation and performance through behavioral tests. The information obtained from these tests will also indicate the key brain areas involved, allowing us to focus our subsequent molecular analysis on these tissues.

  • The gut-brain axis is widely recognized for its significance, as the gut communicates with the brain through the vagus nerves and gut microbiota. However, it is still unclear whether microbial molecular mediators, negatively affected by paroxetine treatment, play a role. Therefore, we will evaluate bacteria-derived metabolites such as short-chain fatty acids, serotonin, dopamine, and other neurotransmitters to explore their involvement in the effects of paroxetine on the brain.

  • Our observations have been obtained so far only in males; however, PSSD also occurs in females. Considering that neurosteroidogenesis and gut microbiota population, which are affected by paroxetine treatment in males, have been demonstrated to be influenced in a sex-dimorphic manner by various neuropathologies, it is possible that these two parameters may also be affected differently by paroxetine treatment in females. Therefore, we intend to explore the effect of paroxetine on neurosteroidogenesis and gut microbiota in females. Additionally, in this experimental model, it would be interesting and useful to investigate the potential involvement of the female vaginal microbiome in the context of sexual impairment and estrus cycle alterations.

GOFUNDME Fundraiser

To provide support to Dr. Melcangi and other research endeavors, we have made the decision to establish our own fundraising campaign. You might wonder, what sets our fundraiser apart from donating to the GoFundMe campaign? Well, our fundraiser offers several advantages over the GoFundMe campaign:

  • Other research opportunities

    • We will not solely look to support Dr. Melcangi his work, but will also actively look for other research opportunities.

  • Higher transparency

    • We have direct communication with Dr. Melcangi and engage in regular conversations with him. We will be able to offer regular updates regarding his research progress. Additionally, we are prepared to assist him in patient recruitment once he is ready to conduct clinical trials.

  • Lower transaction fees

    • A fee of 2.9% + $0.30 is charged by GoFundMe for each donation. As we are a registered non-profit and handle donations directly through Stripe, we are able to acquire donations at a lower cost.

  • Tax-deductible donations (Australia only for now)

    • Australian citizens can receive a tax benefit for their donations to us.

    • Our next goal is to establish a charity in Germany, the UK, and the US, enabling us to offer tax-deductible donations to our donors there as well.

  • Professional image

    • We appear more professional and trustworthy to external donors as an official organization compared to a GoFundMe.

  • Security

    • As a charity, we are legally obligated to disclose how we use the donated money.

  • Recurring donations

    • Making it easier and less burdensome for people to donate on a regular basis helps increase the likelihood of receiving consistent donations overall.

Questions and answers

Answers to the most common questions asked can be found on the donation page of the research fundraiser here.

donate to our research fundraiser

Please consider donating to our research fundraiser by clicking the button below. Any donation counts and will help us find a cure for PSSD.

Marketing fundraiser

Due to popular demand, we have decided to create a fundraising campaign specifically aimed at promoting and increasing awareness of PSSD.

The funds raised will be used for running targeted advertisements on various social media platforms such as Instagram, Twitter, TikTok, Facebook, as well as search engines like Google.

To optimize resources, we have chosen to handle our digital marketing internally, utilizing the skills and expertise of team members who possess professional experience in this field.

A thank you

We would like to express our sincere gratitude to the members of the PSSD community for their continuous support and efforts. A special thank you goes to Rosie and Simon for their courageous decision to publicly share their experiences with PSSD. Their bravery deserves to be celebrated.

We would also like to extend our appreciation to Dr. Antonei Csoka, Dr. Melcangi, Dr. Josef Witt-Doerring, and Dr. David Healy for their unwavering dedication to spreading awareness and conducting research on PSSD.

Questions, suggestions or would you like to volunteer?

Please reach out to contact@pssdnetwork.org if you have any questions or suggestions for us.

Ruben
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