Announcing PFSNetwork Family Advocacy Group - PLEASE READ AND INVITE YOUR FAMILY

Dear fellow patients,

2021 has been a year of steady progress.

In February, we launched our new website, explainer video and patient stories compilation for Rare Disease Day, an important step to increase clinical appreciation and awareness of our condition. We also announced a new PFS video podcast, beginning in April, for which we already have four guests.

Last week, we shared our intention to present an exciting new research opportunity, after taking advice from many scientists over a two-year period. We will work with the PFS foundation to deliver dedicated fundraising which we hope to begin later this year. This is the culmination of an enormous amount of hard work by our team and volunteers over the past four years.

Now, we are pleased to get moving on another important project that could be critical in shaping the advocacy and awareness efforts necessary to progress acceptance of this condition and address the dire systemic failures patients still face.

PFS Patient Family Advocacy Group is pleased to announce our intention to form the first-ever advocacy group for family members and loved ones of PFS patients. This group of mothers, sisters, fathers, brothers, and partners could be crucial in accelerating both awareness and appreciation of our condition.

Patients often stand alone. Many work in scattered directions, and others are sadly too severely affected to undertake important action themselves. A united group of our fiercest supporters could help change that, becoming a helpful chorus that amplifies our awareness and advocacy message, and extends fundraising reach.

This approach has worked well in many disease communities. One only needs to think of the positive effect a patient’s family or loved ones can have in diseases like type II diabetes or cancer. These diseases are now well clinically understood, and there is an abundance of funding for research into treatment.

Objectives is forming an advocacy group for patients’ family members and loved ones. The group will:

  • Meet every two months to initiate and discuss progress.
  • Lobby regulatory bodies and elected representatives for recognition, adequate warnings and change to the status quo of an urgent failure in clinical care for PFS patients.
  • Contact media organisations to share stories.
  • Amplify the awareness message of PFSNetwork and contributes to current awareness projects like our video podcast and YouTube series.
  • Assist in directing fundraising to new studies, both later in the year and as they develop, through their network.

Over time, we hope that this group will grow considerably to host dozens of family members to champion our cause together.

How it will work, and who will be involved

We understand that patients’ families often have their own busy lives. To avoid work being sporadic and unpredictable, our plan is for the group to meet for an hour, every two months, in a channel we will provide. These meetings can facilitate discussion about upcoming project work and focus on tasks to complete. Ultimately, there would be a time commitment of a few hours a month, particularly during the initial stages when new members are becoming acquainted and aligning on objectives.

Family members and loved ones of PFS patients are encouraged to apply to join through this form:

Our goal is to launch the group with a core leadership of around five members. I’m pleased to say we have three volunteers already, including my sister, and relatives of other patients have also expressed interest. Now, we are asking our community for volunteers.

This project is another example of a small step that any patient can take to further awareness and research into PFS. It does not take an abundance of funds or extraordinary skill. It simply requires some courage and effort.

All these activities are invaluable to our end goal of solving this very complex problem. We greatly appreciate the help from the loved ones of patients affected. Please reach out to me in PM with any questions.



Just to note, if you know anyone who’s not on the forum who may be interested, please share this with them also.

1 Like

Thanks @Sugarhouse!

This is a very important initiative. Family members are important witnesses of what this condition can do to people, their careers and family life. For many diseases, family members have been a driving force to create awareness and help with other projects.

If your family knows about your condition and is willing to help via our awareness projects, donations or other means, please ask them to join the Family Advocacy Group.


Worth mentioning that just as you probably aren’t aware of people in your life going through this, neither are your family members. The opportunity for them to speak with other people experiencing pfs through another person is likely to be something that they would benefit from too.


Absolutely @Greek - another tremendous benefit of family members collaborating and co-operating.

Hi all,

Bumping this thread to ask for your support in this important new project.

Families are an essential element of any successful patient community, helping lay the fundamental building blocks of awareness and advocacy. They are also instrumental in fundraising.

If you aren’t quite sure, or would like to ask for more information, please reach out via PM and I’ll be happy to help.


Hi all,

I’d like to bump this thread once more to ask for your support. We’ve only had one volunteer from the community so far, which brings the group total to 4, but we’d love to start with 10 patient family members or loved ones.

If someone in your family, a friend, or loved one would like to get involved, please reach out via PM.


1 Like

Hi @Sugarhouse did u manage to get hold of my sister? Unfortunatley my other family members find it v difficult as things stand and dont see the potential benefits of an advocacy group. I. E. They want to have an escape rather than more.

Hi all,

We are pleased we’ve now had a dozen volunteers for our group. However, we’d love to have more, so I’m again putting the call out for any patients whose family members could dedicate 1-2 hours a month to help coordinate effort towards awareness, legislative and regulatory changes, as well as fundraising.

Our organisation’s momentum has been building steadily since our launch on Rare Disease Day, with our charity registration application submitted and filming of 9 episodes for the video podcast nearing completion. We are also working hard on launching new marketing & awareness strategies to coincide with the registration of our charity, and of course, continuing consultation around potential research. This means there is a lot of exciting work about to happen, and the advocacy group will be crucial in supporting that work.

Our family and loved ones can have an enormous impact in affecting change. Let’s look at a simple equation for the effects a network of non-PFS patients may have in affecting real change and acceptance of our condition:

  • If we have 12 members in our group, and they all reach an audience of 25 people with our message, we have an audience of 300 people. These 300 people could be friends or family of a group member, and more likely to be supportive than a stranger on the internet.
  • If we increase the group to 20 members, that audience becomes 500.
  • If we increase the group to 50 members, that audience becomes 1250.
  • If we increase the group to 100 members, that audience becomes 2500.

The benefits of having a bigger audience made up of non-PFS patients and loved ones are immense. Not only will they potentially contribute to important research, but they will begin to turn the tide on the narrative around PFS, and acceptance of the condition. They turn into supporters, over time spread our message, and also become potential donors.

The potential to multiply our supporter network over time is enormous.

These are simple and proven grassroots strategies used in countless causes, that although take time, create real and lasting change. They don’t require us, or our friends and family, to have any particularly outstanding skills. They just take a little time, effort, and courage. Most importantly, they take a united group taking small steps towards a collective goal.

If you think someone you know may be interested in helping, please get in touch and I’d be happy to speak with them about how they can be involved.