Amanda has double the inspiration for establishing The EOS Network. Amanda’s two children, Samuel and Heather, were born with eosinophilic gastrointestinal disease (EGID) which makes eating incredibly painful.
When Amanda’s son was diagnosed with the disease at 7 months, the hospital knew very little about eosinophilic disease or its long-term effects. She was simply given a one-page print out from a medical journal to read.
In 2005, Amanda attended her first conference for children and families living with eosinophilic disease in Cincinnati, Ohio. This conference inspired the following 14 years of patient advocacy for EOS patients and families in the UK. She knew that “It’s great to talk and it’s lovely to be amongst other people, but what we all need and want more than anything else is to have medical care.”
“If you had asked me in 2017, why are you doing this? It’s because my children still can’t get healthcare and they’re still ill and no one understands what’s wrong with them. What else do you do as a mother? You take the skills that you got and say, right I know what I can do so I’ll take that and I’ll go and try to fight in a constructive way and change things.”
In 2019, Amanda was referred to Beacon by a family friend working in drug research. Amanda took his recommendation and has since engaged with a countless number of our patient group empowerment projects. In her time with Beacon, Amanda has turned to our training sessions for help with fundraising, social media, virtual events, registries and more. Amanda even joined our 2020-21 Patient Group Mentoring Programme, where she was paired with Mark for bespoke support in improving The EOS Network’s presence and strategy.
We’re thrilled to say that with Amanda’s determination, Mark’s guidance and Findacure’s facilitation, Amanda accomplished a lot in in 2020-21:
- Established a basic patient registry to help determine disease diagnosis time, family history and lived experience of eosinophilic disease patients.
- Grew the charity’s Community Network to 2,200 followers on Facebook and gained 350 new registered members.
- Expanded her Healthcare Professional Network to 22 countries and had over 170 healthcare professionals register to it.
- Connected a global network of EOE support groups to ensure that patients can access support in their native language (Italian, Spanish, English or French).
- Completed three patient experience submissions and attended NICE for Health Technology Assessments (HTAs) to Scotland, England and Canada. Scotland approved and recommended the drug for use!
- Worked with pharmaceutical companies on trial recruitment, medical education and access to medicines for eosinophilic diseases.
- Applied for and secured Covid-19 Gov.UK – National Lottery Funding, which was used to develop a patient action plan for emergency care
- Run a 3 month “Wellbeing Wednesday” webinar series that’s turned into a Healthcare Professional Education Programme and Patient Conference all in one.
- Grew volunteer and trustee team
“I couldn’t have done all I have done this year without you. You give people like me and how I was the resources to make things seem achievable.”
Helping patient group leaders like Amanda “evolve something that they’ve had, the little acorn, into an oak tree” is why Beacon exists. We can’t wait to see what she does next!
“Beacon has a wealth of knowledge. Not only that, you have a database of people who have even more knowledge and you’re not afraid to share that. It’s not exclusive. You’re there for connecting people with those who can help change things and making it accessible.”