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
PFSNetwork.org 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
PFSNetwork.org 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.
Best,
Mitch