- How did you first become involved with the mitochondrial disease community and International Mito Patients (IMP)?
I joined the MitoAction team as CEO in November 2016. Shortly after that, MitoAction became a member of IMP as we looked to connect with other patient advocacy organizations supporting the mitochondrial disease community. In June last year I was elected as the Board Chair of IMP and I am honored to now lead the organization.
- As the incoming Chair, what are some of your immediate goals for the International Mito Patients organization?
Our immediate goals are the launch of the Global Mitochondrial Disease Patient Registry. This will be the first international patient registry and we are honored to take the lead on this initiative. We are also working on a project called CureMILS, which is focused on therapy development for DNA-associated Leigh syndrome (MILS). We will be entering a strategic planning phase in 2022 to evaluate and plan for the future of IMP.
- What role do you see organizations, such as IMP, playing in the fight to improve the quality of life for people with mitochondrial diseases?
We hope that IMP will continue to elevate the patient voice on a global stage and continue to support the patient advocacy organizations worldwide that are the boots on the ground. As we work to facilitate collaboration among patient advocacy groups, clinicians and researchers, we hope that this will continue to move therapy development forward and the ways in which we are collectively supporting families on their journeys with mitochondrial disease.
- Why do you think it is important to raise awareness of mitochondrial diseases through campaigns like Rare Disease Day and Mitochondrial Disease Awareness Week?
It is critical for us to continue to raise awareness of mitochondrial disease so that we can push for additional funding, opportunities for therapy development and ultimately a cure. We need mitochondrial disease to be top of mind like other major diagnoses.
- What are your hopes for the future for the mitochondrial disease community?
My hope for the future is that one day there won’t be a need for organizations like IMP or the various patient advocacy groups because a cure has been uncovered. Until then, we will continue to work tirelessly and collaboratively, to support the families who need us. We will ensure that their voices are heard by clinicians and researchers to guarantee that what is most important to our families, those are the needs that are being addressed by everyone working to support this community.
- What advice would you give to patients and families affected by mitochondrial disease?
My advice would be to seek out support from the incredible member organizations of IMP. Our families are not alone on this journey, and we can help arm them with resources and information to help them have the best quality of life possible as they face mitochondrial disease. Whether it be information about diagnosis, symptoms, clinical trials, school support, or sometimes just to have a listening ear from someone who understands their challenges, we are committed to being here for every patient and their family in whatever way they may need us.
The theme that MitoAction has adopted this year is “Hope is on the Horizon.” One thing I continue to remind our community of is that 24 hours a day, 7 days a week, somewhere in the world, there is a light on in a lab where a researcher is working on mitochondrial disease. Hope is on the Horizon.