Testimonials


"I discovered Mito New England last summer, a few months after receiving my son's diagnosis. This was during a time that I had so many unanswered questions and, like with most rare diseases, very little resources to look to to. MNE was there for me though. Julie Gortze helped connect me with other families, doctors, and resources and information that has made this journey much more bearable. MNE offers valuable and irreplaceable resources for families in our area and I will be forever grateful". - Laura Cioe
"I like spending time with those kids because I get to know other people who have mitochondrial disease. They understand why I get tired and stuff". 
- Zachary, Age 11.
"My family became involved in MNE at it's inception. At that time we were feeling rather frustrated and isolated in our journey. Through MNE we have increased our understanding of life with mito and built some of the best friendships with others who truly understand the precarious nature of our lives". - Christine

"RNE come into my family's life just when we needed the organization the most. Our sons recently were given the Mitochondrial Disease diagnosis when this organization began. The information and the support of meeting others on similar journeys was and is much appreciated. Julie Gortze has been a phenomenal host and organizer. Her knowledge and the speakers she has arranged have been extremely helpful. MNE has been life changing and we are grateful".
- Anne
"As a patient advocate who works with rare diseases, an important part of my job is connecting families to local and regional resources. Rare New England has been a wonderful and dedicated resource for rare disease patients and families for several years, and I never hesitate to send my families their way! RNE works hard to provide workshops and information sessions, often featuring local physicians and clinics, helping patients and families explore the latest care information, and making them aware of local medical options and resources. I also appreciate that RNE works collaboratively with other rare disease organizations in New England and around the nation. This gives patients and families an easy way to connect with other medically complex families in their communities, and increases the advocacy and awareness power of all rare disease patients throughout the region. RNE is a fantastic group, and a great resource for the New England area." 
- Jessica Shriver, MATh, MSBe
"I had never heard of MITO before receiving a clinical diagnosis. RNE has educated me and provided me with some amazing friendships and support"! 
- Nina from Boston
"Having access to what Mito New England has had to offer has been great. The journey with Mito is a complicated one and life impacting on so many levels. Through MNE I have been given the chance to meet other people who understand the journey and get and give support as well as learn from others, this helps reinforce that I am not alone with the struggles, concerns or intent to live the best I can with an unpredictable disease. Along with the chance for connecting to others has been an opportunity to learn about resources and attend presentations enhancing not only understanding of mito but also the gains that have been made as well as the challenges still facing us and what we can do for us now and to help those in the future. All that said I am grateful for the work that goes into making the support groups, resources, and presentations among other things available and happen as it adds to my quality of life on this complex journey". 
- Melissa
"Volunteering with MNE has given me an opportunity to provide a much needed service to people affected by Mito. I have met people all over the world. SInce I often had to research to answer questions for new members I had the opportunity to learn a great deal. It also helped to get me outside my box and comfort zone even when I didn;t want to be, which was sometimes good for me. --  
Heather Field Ruggiero, RN BSN"