An interview with Jess Dove London & Esther Labib-Kiyarash on Turnto PD on August 8, 2024.
Biography
- Esther
Esther is a married mom of 2 kids. Esther was diagnosed with Young Onset Parkinson’s Disease after a 2 year-long journey of misdiagnosis and discovering symptoms of Multiple Sclerosis. Esther loves the desert, having grown up in Las Vegas and now lives in Texas.
- Jess
Jess is the CEO & Founder of Turnto. She has a background in social impact ventures and community building. Jess lives in Australia and has two children with a rare type of Cerebral Palsy. When not obsessing about overturning the slow and piecemeal health system, Jess can be found in wild places biking, swimming, or trekking!
Please tell me a little about your background.
- Esther
Having an incurable, degenerative, and progressive brain disease that has no real disease-modifying treatment can be overwhelming at times. Especially one that is mostly associated with older people and men.
“So of course the first thing I did after diagnosis was start making TikToks!” “Social media has given me a great creative outlet to raise awareness about YOPD and let people know that anyone can have this dumpster fire of a disease.”
When I started educating myself about the condition, I spent hours on every website and social media platform. It was tough to interpret the research and figure out what was helpful.
I began developing relationships with experts and patients with positive results and trying different things. I hate the term “alternative therapies”. A good alternative is anything that makes me feel a little better and gives me more time and energy for my kids.
One time, I was struggling to walk, and I thought my disease was progressing. So I made a video and posted it online. A world-renowned neurologist saw it and immediately knew this was dyskinesia, a common medication side effect, not a progression of the disease.
Empowered by this information I changed my medication and now walk normally. This is the power of sharing information. I want Turnto to do this for everyone. Not just weirdos like me on social media.
- Jess
I started Turnto after our family was told there were “no treatment options” to help our son living a movement disorder very similar to Parkinson’s (a rare type of Cerebral Palsy), when there were. However, it took years of personal research and connecting with others in the network to find a handful of life-changing treatments.
Most of these treatments were hidden in medical literature, some even low-cost and easy to apply. But it took becoming a full-time researcher and flying to see world-leading researchers in order to discover these interventions.
This is not an uncommon story. There are many families and individuals going through the same thing – unaware of life-changing opportunities available to them.
So I founded Turnto, aiming to bring together the latest technology, consumers and experts to solve this problem in the aims of bringing thousands to their next medical breakthrough quicker.
Can you tell me more about your organization?
- We’re a health tech startup founded by a team of patients passionate about demonstrating health breakthroughs for every single person.
- Turnto is an app that aims to speed up Parkinsons’ breakthroughs by curating all cutting-edge insights across community experiences, medical experts, and research in one space – so that you can stay effortlessly informed.
- From the latest research, community stories, reviews, opportunities, tips, and expert insights, Turnto curates’ daily content for you – generated by AI and diverse contributors – helping you stay effortlessly informed.
- We are currently live in Cerebral Palsy, Long Covid, and ME/CFS – and are working together with Jessica Krauser (Secret Life of Parkinson’s) and Esther (shakinginmyboots1) to open up into PD.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion for Parkinson’s stems from my son with a condition similar to Parkinson’s. Witnessing the challenges he faces and additionally our own challenges in trying to find treatments have made me hyper aware of how there are unfortunately still massive gaps in care and support for movement disorders like his. It feels incredibly unfair that many people are missing out on improved quality of life, and we have yet to find a cure. When he was first diagnosed, we were really left on our own. The doctors gave a diagnosis but little advice on how to manage daily life. It was up to us to do our own research and find treatments on our own. I am working towards a future where families and individuals don’t have to go through the struggles I did.
How can someone get in touch? What is your website?
https://waitlist.turnto.ai/parkinsons
How can others also become advocates for awareness?
Joining your local support group or charity focused on Parkinson’s is a powerful way to advocate for awareness. These groups are a great way to not only meet other peers who may be going through something similar, but also connect with organizations whose main purpose is to support people like yourself. Charities and support groups will often have advocacy initiatives to find more resources to provide this support. There’s also strength in numbers, and working together can increase your impact, helping to spread awareness and understanding of Parkinson’s disease.
Sharing with friends and family – awareness in day-to-day interactions is important. Openly sharing your experiences of Parkinson’s with friends, family, and colleagues is one of the best things we can do to raise awareness. Many people recognize ‘Parkinson’s’ by name but don’t truly understand what it’s like to live with the condition. By discussing it openly, you help those close to you learn and understand more, which can foster a more informed and supportive community. This personal form of advocacy can quickly spread awareness as those around you become more knowledgeable and empathetic.
In your opinion what is the key to effective advocacy?
Effective advocacy hinges on curiosity and staying informed. Being curious in being open to learning how different people approach caring for themselves. People can have both negative and positive experiences with the same treatment – but it doesn’t invalidate either story. Understanding these nuances in the way we care for ourselves / loved one is so important to empathy & advocating for others.
But on top of that, it’s also important that we stay up to date. Research is always evolving; we’re constantly learning new things. Not just through research papers, but also through communities and individual stories. Staying educated is the best thing we can do, not only in making our informed decisions but also in educating others.
How can we better fundraise to support a cure for Parkinson’s?
To better fundraise for a cure for Parkinson’s, we need to focus on spreading awareness about the disease and its prevalence. Parkinson’s is the fastest-growing neurological disorder globally, yet many people are unaware of its commonality and the full range of symptoms. There are so many things we can continue to do
- Educating the public on the reality of living with Parkinson’s can demystify the condition and generate empathy and support.
- Tracking and quantifying the economic and social impacts of Parkinson’s
- Raising awareness on the growing burden on healthcare systems and challenges caregivers face
- Incentivize collaboration between healthcare sectors, government bodies, and private sector to build products that help quality of life – until we can find a cure
Why should people who don’t have Parkinson’s care about this?
There are many people without Parkinson’s that care about Parkinson’s – friends, family members, students, healthcare professionals that work with people with Parkinson’s and researchers, pharmaceutical companies. This app can help anyone increase their knowledge of Parkinson’s
Have you had any family members or relatives affected by Parkinson’s disease?
I don’t have any family directly impacted by Parkinson’s however my son has Dyskinetic Cerebral Palsy which is very related to Parkinson’s. There is quite an overlap in symptoms – muscle stiffness, rigidity, tremors. However, Dyskinetic CP is rare, only 10% making funding and research scarce. Whereas in Parkinson’s, there’s a lot more funding and progress for Dyskinesia and Dystonia – so I have always been personally interested in PD research.
If you had one song that would tell us more about you or represent your life which song, would it be?
I’m really stuck on this one! Currently going without music these days.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
There have been a few mantras that have helped me in really difficult times in our life when my kids were first born. They were both very sick and we ended up living in the ICU for almost a year. The one I really leaned into was “you never know how strong you are until you have to be”, particularly for those hard days and moments I think there is a strength that can be found when you don’t expect it. And on the other hand, on the days you don’t have it, it’s also okay because sometimes we all need time to grieve and recover.
eed time to grieve and recover.