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Celebrating 15 years of… patient advocacy

One of the reasons The Lily Foundation exists is to help give a voice to mito patients and their families, to listen to them and give them a say in the services and support available. A lot has changed in the last 15 years, and we’re proud of the progress we’ve made, but we don’t intend to rest on our laurels, because understanding mitochondrial disease is the key to unlocking effective treatments and that eventual cure.

Thank you, as always, for helping us to give mito patients a voice.

The Lily team x

Power to the patient

Patient advocacy is important in all areas of healthcare, but particularly so in the complex field of mitochondrial medicine. Patients are the experts when it comes to mito, and in the medical world there can be a real lack of understanding about the impact of the disease on people's everyday lives. That's why we've worked hard to connect those patients and their families with researchers, with pharmaceutical companies and with medical professionals to ensure they have a platform for their voices to be heard.

Your money matters for Lily’s newest team member

We believe the support we offer mito patients and their families should cover their finances too, because understanding what benefits you might be entitled to can be stressful and confusing, especially when you’re already dealing with the emotional and physical effects of the disease. We’re therefore delighted to welcome our new Benefits Advisor, Chrissy, to the Lily team. We asked her how she’s planning to help mito patients and their families navigate the tricky topic of financial welfare.

The mito ‘action man’ with a mountain to climb

If you couldn’t walk, couldn’t see properly and were hampered by a severe lack of energy, climbing a mountain probably wouldn’t be top of your ‘to do’ list. Not so for mito patient Ian, who has set himself the remarkable challenge of summiting Snowdon this summer. Despite being visually impaired and confined to a wheelchair, Ian’s no stranger to trials of endurance, however there’s still plenty more this action man wants to accomplish.

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