Kira serves as CEO of MitoAction and champions the growth of the programs and services offered by MitoAction. Her priority is to ensure that each and every person affected by mitochondrial disease knows they are not alone and that the MitoAction team will be here every step of their journey. Kira is committed to stewarding key funding opportunities, strengthening the organization’s business development and governance and working with the community to increase MitoAction’s national impact and presence in the areas of aware- ness, education and advocacy.
“I am honored to lead this incredible team who works tirelessly each and every day on behalf of the amazing community we serve. I love hearing from our families, and I welcome you to reach out, share your story and help ensure that MitoAction is doing everything we can to pro- vide the support and services that are most meaningful to you.”
After serving as a volunteer for several months, Jeannie officially joined the MitoAction team in January 2018. Although she had never heard of mitochondrial disease until she started working for MitoAction, Jeannie has dedicated herself to learning about this rare disease so she can help MitoAction continue to expand the ways in which we serve the Mito community. Jeannie oversees the day-to-day operations of MitoAction, as well as the Marcel’s Way Family Fund, scholarships, Matthew Harty Camper Fund, MitoSocials, and MitoPlaydates.
“I couldn’t be happier to be a part of the MitoAction team! I truly love all that we do and feel so fortunate to be a part of something that touch- es the lives of so many people.”
Stephanie and her son have been part of the MitoAction community since 2007, when they learned of the organization after his diagnosis of Complex III. She has championed families in a volunteer capacity as they learned alongside others about the effects of this disease and how to live beyond this rare disease. In the fall of 2019, Stephanie joined our team as the Patient Support Coordinator, where she connects with people who are in need of resources and connecting with someone who understands.
“As a parent of a child who is affected, I understand the need to connect with others to find strength in community. My goal is to support all persons with ideas, information, and a bit of humor, especially when the days are long and dark. Together we can become a voice for rare disease.”
Contact Stephanie at email@example.com.
Since 2019, Soozi has been doing Program Support for MitoAction through patient advocacy and research. She has also taken on the role of MitoSocial Moderator since MitoSocials become virtual. Soozi is a graduate of UC Berkeley in Conservation and Resource Studies. First a botanist, then a special education teacher, Soozi decided to earn a master’s to better support children with disabilities. She also trained as a practitioner in the medical model for natural family planning. She found MitoAction in 2012 when she started having pronounced mito symptoms and called Mito 411 for help. Soozi is a Biotechnology/Ethics graduate student now at John Paul II Institute in Washington, D.C. and she specializes in mother-child health studying recent breakthroughs in understanding the woman’s cycle in order to understand women’s health which includes mitochondria. Soozi has three children, one lost to a miscarriage. Service dogs have played a positive role in her family.
Contact Soozi at firstname.lastname@example.org
Contact Jenevieve at email@example.com.