For Funmi Vanessa Ullam, the world changed overnight when her son was diagnosed with sickle cell. Her journey as a new mother was transformed into a search for a cure, evolving into a career at the intersection of healthcare, technology and advocacy. Here, we explore her and her family’s experience of advanced therapies, and her tireless charity work.
“My journey into genomics and advanced therapies started when my son, who’s now 14 years old, was diagnosed with sickle cell as a newborn,” Funmi explains. “Overnight, I went from being a new parent to navigating a world of research, looking at what options were available for treatment.”
These options felt few and far between; although over 20 million people are living with sickle cell worldwide, the condition has historically been understudied and underfunded.
“I started looking at the trials that were going on, looking at universities around the world and some of the professors that were working on treatments for sickle cell. I didn’t find that many, and they all seemed to be focused on bone marrow transplant,” she says. “I would say that’s when I really became obsessed with treatments. I didn’t call them advanced therapies back then, because I just was thinking about a cure.”
Finding this cure was key, as it had the potential to transform her son’s life and alleviate the ongoing pain he suffered from. “Sickle cell is a condition where, unless you’ve seen the impact, you will have no idea how it affects a patient,” she explains. “Watching my son and seeing how he was able to just cope with this pain, this chronic pain, and internalise much of that pain… I wish people knew more about that.”
Along with her extensive research into the subject, balancing this knowledge with her instinct as a mother was crucial.
“I felt that I had the foundation of information from research, and that helped when I was having discussions with clinicians or receiving medical advice, because I always had some sort of context to draw upon. But as a mum, you just have this gut feeling about situations, and it’s really important to lean into that as well,” Funmi explains. But with so much misinformation floating around on the internet, these gut feelings had to be balanced with her judgement, and she calls for better resources to be made available to families and patients. “I wouldn’t say that [researching online] is the best way to go about it. I think there must be more guidelines on where a parent should look for information about a health condition.”
Funmi’s journey was marked by two pivotal moments. The first was her decision to undergo IVF and pre-implantation genetic diagnosis, in the hopes that her son could receive a bone marrow transplant from a sibling. “That was really eye opening, the fact that science has evolved to such a point. It was a long journey for us, but it gave us some insights into science and what’s possible and just how amazing the human body is. And that changed our outlook towards science and potential and hope.” Unfortunately, Funmi’s second child, who was conceived through this IVF process, was not a match for her eldest son, meaning the bone marrow transplant was not an option.
The second turning point was a phone call from Kemi, a woman who had been cured of sickle cell as part of a clinical trial in the United States. “She called me up out of the blue. She’d seen information on me, my charity work, and she called me and told me about her experience,” Funmi recalls. “She told me that she wasn’t living properly before, and now she’s finally, finally living life. That was really pivotal in our journey, because I’d seen what a great outcome could look like. It gave me more of an open mind about what’s possible.”
These experiences only served to further encourage Funmi on her journey to find a cure for her son, with their lives changing drastically after they were made aware of a clinical trial for an advanced therapy, taking place in the UK.
“Advanced therapies are incredible,” she states. “It’s a promise that a condition could potentially be no more. That there are options and opportunities to cure or to manage or treat that condition in a way that hasn’t been available in the past. Science is always evolving, and knowing that there is potentially something out there, it’s just another glimmer of hope.”
Yet not everyone can benefit equally from these approaches, with clinical trials often having strict admission criteria and treatments sometimes costing millions of pounds. “I think there needs to be a lot more focus on access to those treatments,” Funmi states. “I’m hoping that more treatments are funded and pass clinical trials, and that the process and the experience for the average citizen is much improved.”
Several questions still need to be answered in order to reach this goal. “How do you find out about these opportunities? How do you prepare for these opportunities? How do we support families that are going through these treatments? Those are things that I hope will improve as we move forward,” Funmi explains.
Hope and perseverance have been key themes through this journey for Funmi. But what do these terms mean to her?
“Hope for me is having an informed view of a better future. And I think it’s a choice as well. You choose whether or not you want to be hopeful about the future, even when the outcomes aren’t guaranteed. And perseverance is all of the things that you do to make everything happen. You know, things don’t just happen. It’s about showing up to appointments, having an open mind, chasing referrals, filling in forms, advocating. Just doing the work, even when you’re tired.”
Alongside her first-hand experience, Funmi’s professional background in health technology provided her with a unique lens. She saw firsthand the friction in the healthcare system and began to ask: How can technology make this seamless for families?
“I’ve worked my whole career in technology, and I’m used to seeing how technology is an enabler. It’s a time saver. It helps in so many different ways. And I remember I was asked a question: if you could have a technology that could do anything for you, what would you need it to do?”
For Funmi, this was an app that could help her log her son’s symptoms. “I wanted to log his pain, his hydration, whether he had taken his medication. I wanted to set targets as well, because these things can be challenging for a child to be motivated to do.”
This desire led to her setting up the Eli App, to provide a way of tracking symptoms, understanding patterns, and motivating children, helping feel seen and acknowledged. “If you take a step forward, there is a reward system. It’s moons; instead of a crescent moon, which is when the blood cells are like a sickle shape, we’re aiming for round moons. We use that as the reward system in the app. It’s about helping the child understand this condition and normalising it and rewarding their efforts. That was the aim of the app.”
Funmi’s work has not stopped there.
“I remember way back then, I was looking for the community, or other parents of kids that had sickle cell, to understand what their life was like. What’s the journey like? Just that peer-to-peer support and that community, I was looking for that,” she explains.
At the time, this support was limited, so Funmi took matters into her own hands. “I now know there are more communities that have developed over the years, but at the time, I created CrescentKids as a way to build community, to normalise the conversation and to support children and families navigating long term health conditions like sickle cell. We launched in the pandemic. We had a fundraiser, and the point of that was to provide families with wellbeing items. It was more of a gesture, saying, ‘Hey, we’re CrescentKids, this is our journey, here’s a gift to let you know that we understand what you’re going through.’
“That was the beginning of CrescentKids, and now we are collaborating with the NIHR on research for children, looking at the educational outcomes of these children, and also the physical impacts of sickle cell over time. We also do things like support children in hospitals. This December, we had a fundraiser where we provided gifts to children, families and healthcare professionals on wards over Christmas. So, we have a research side, and then a wellbeing side to CrescentKids.”
Watch Funmi’s full interview below.
