The mito community is a tight-knit group that is driven by connections. While it’s challenging to live with a disease that currently has no FDA-approved treatment options available, the mindset is always “what’s next?” As someone who is relatively new to the community but has years of experience in patient advocacy and donor development, I find this attitude incredibly impressive and it continues to inspire my work as the CEO of the community’s largest patient advocacy organization, UMDF.
While families, patients and caregivers affected by mitochondrial disease did not choose this life, they do choose to advocate for the best care possible. Their relentless spirit continues to inspire our work at UMDF – they are true mito warriors and are always willing to step up and make a difference.
We, at UMDF, know that we have to move as fast as we can. Although it will never be fast enough for a sick child, or an affected adult whose life has been changed, or a caregiver, if we don’t go fast, who will?
Our mission is to promote research and education for the diagnosis, treatment of mitochondrial disorders, and to provide support to affected individuals and families.
What does this mean? We help aggregate and amplify the patient voice as every journey is different and needs to be heard. We advocate for the patient families we serve and make connections easier for them. We also serve as a convener for the community – bringing together families, healthcare providers, researchers and the general public.
Through a variety of efforts, we support the mito community both directly and indirectly. For example:
If you or your loved one has been recently diagnosed, find a way to connect and get involved.
Written By Brian HarmanLearn More About The Charge
Advice for Families Affected by Mitochondrial Disease
The Charge sat down with patients, caregivers and advocates for their first-hand experience of what life with mitochondrial disease is like. In this video, these mito warriors share advice for newly diagnosed patients and families. A mitochondrial disease diagnosis may make you feel alone and overwhelmed. You may be unsure about your next steps or have trouble coping with the plethora of new information.Hear From Mito Patients, Caregivers and Advocates