Funmi (Vanessa) Ullam: From Lived Experience to Research and Innovation in Sickle Cell Care
Funmi (Vanessa) Ullam, Senior Account Executive, Public Sector at Cloudflare, shared a post on LinkedIn:
”ASCAT wrapped up last weekend, and we reached a significant milestone for Crescent Kids .
Two pieces of our research were featured!
Both studies have grown from the same starting point.
One started with lived experience and became a product. The Eli App.
Eli was born from the realities of raising a child with sickle cell and asking: how can we make the day-to-day experience better for children and families?
The other turns lived experience into national evidence.
Our NIHR (National Institute for Health and Care Research) sponsored study is looking at the health and education outcomes of children with sickle cell across the country, helping us understand the impact that extends beyond the hospital.
Two very different pieces of work.
One building better support for families today.
The other building the evidence that can help shape better outcomes tomorrow.
And both asking the same question:
How do we improve life for children growing up with sickle cell?
Seeing them both represented at ASCAT felt like a real moment for Crescent Kids.
From lived experience to research, to innovation, and ultimately to impact.
Proud to be doing this work alongside A Sutcliffe our Chief Medical Director and Trustee; Samah Babiker , our Consultant Paediatric Haematologist and Clinical Lead; Dominique Wimmer Chief Product Officer and Blessing Aina our lead researcher and trainee medical doctor.
And a special shout out to Farrah Adegunle the newest member of the Crescent Kids volunteer team, who helped bring the Eli poster to life
And to everyone who has supported us along the way, thank you. This work is built in evenings, weekends and spare hours, by incredible people who believe in the mission.”
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