Letter From the Executive Director

Thank you for taking a moment to learn more about MitoAction. We are a committee of parents, patients and clinicians from top Boston hospitals who care about improving the daily quality of life for all people affected by mitochondrial disease.

Have you felt alone or confused while navigating your family’s journey through mitochondrial disease? Parents and children who are affected by mito and who also struggle with other disabilities especially need support. You are the reason why MitoAction exists.

MitoAction is a nonprofit organization founded by a patient and her nurse practitioner in 2003. This patient, who is also a parent of 2 children with mito, was passionate about advocacy. She was sure that other families affected by mitochondrial disease would be empowered if they could connect, contribute, and make a difference right now in the world of mitochondrial disease. The mission of the Mitochondrial Disease Action Committee was established: SUPPORT*EDUCATE*ADVOCATE.

Since the conception of the group, MitoAction has become a leading source for people like you to put their ideas into ACTION. Moms, Dads, husbands, patients, therapists, nurses, teachers – even children – have the opportunity to get involved with MitoAction and make a difference. We believe that by working together on projects that provide support, advocacy, and education, we are simultaneously fulfilling the tremendous need for support and awareness faced by families living with Mito.

My youngest daughter Eva turns three this month. Eva has Leigh’s disease, a very serious and progressive form of mito. Each day Eva is here is truly a blessing for our family. Eva, and mitochondrial disease, has changed our lives forever. Average isn’t good enough anymore. We want to see programs, awareness, and legislation that empowers families with special needs to help their children excel, and to have the very best quality of life possible. I bring this passion to MitoAction, and I invite you to join me.

Your voice is important. Please email me at director@mitoaction.org so that you can receive our newsletter. Every month we hold socials and toll-free telephone meetings. I welcome your story and hope to help you connect with others.

Warm regards,
Cristy
Cristy Balcells RN MSN
Executive Director