RNE Volunteer Team 
Heather Field Ruggiero, RN, BSN
worked as a nurse, facilitating patient care in a clinical setting for a comprehensive medical clinic in New England.

Heather's professional interests are in Medical Ethics, and Cellular Biology and Pathology. In addition to these, she has volunteered with with the patient support group Mito New England since its inception in 2013. She currently coordinates and facilitates Facebook groups; first for MNE, and now for RNE. 

Heather believes volunteering has provided her with networking opportunities, and has allowed her to meet members of the medical community from around the world. She has learned a great deal from these encounters. She has likewise learned a great deal about available resources in the medical community, and how vital these resources are to obtaining accurate diagnoses and treatment plans. Maintaining Facebook groups allows her to share her knowledge, and Heather feels a sense of joy and fulfillment in watching the groups she works with grow. 

In her life, Heather has experienced first-hand the effects of rare and complex medical conditions. She is currently on medical leave due to her own health issues, and is the mother of a child with complicated health issues. Heather resides in Maine, with her young daughter.
Teen/Young Adult Coordinator
Karen Richards is a 16 year old rare disease advocate. 

Growing up chronically ill, Karen decided to not let her disease ruin her life, but rather to triumph over it. She founded and moderates a website featuring stories about other children and young adults with invisible illnesses, called sweetlemonpies.com. These stories are written under her pen name, Molly Jones, from the famous Beatles song. 

Karen has spoken at the MA state house as an advocate for rare diseases, and has lobbied and provided testimony for bills supporting people affected by rare diseases. Karen will never stop advocating for patient voice and rights, and in her partnership with RNE, Karen's goals are to help and inspire others with rare diseases.

Karen lives with multiple medical conditions, and has had 18 surgeries. She resides in Massachusetts, with her family.
Technical Support/FB groups
Coordinator
Maisie Marcotte is a 19-year- old student at Villanova University.

She is working towards a B.S. in Biology with a minor in Global Health. Maisie has a strong interest in public health, especially epidemiology and rare diseases. It is this interest that brought her to RNE, and she enjoys learning more about and advocating for rare disease patients by
sharing resources on RNE social media.

Maisie is very passionate about helping others and is excited about working with an organization that strives to help and advocate for the rare disease community. She hopes to not only make a difference by finding resources to share with this community but also learn more about rare diseases and the research being done to get accurate diagnoses and treatment plans.

She resides in Massachusetts with her family.
Social Media Coordinator
A lifelong Connecticut resident, Joanna Mechlinski is a former newspaper reporter who now works in education. She was diagnosed with lupus, fibromyalgia and polymyositis in her early twenties. In addition to helping spread rare and chronic illness awareness, Joanna is also passionate about animal advocacy, reading, writing, and road trips.
Blog Coordinator
Allison Wood is a graduate of the University of Vermont with a bachelor’s degree in Animal Science. She has spent the last nine years working in the dairy industry for a bovine genetics cooperative.

After her son, Isaac, was born she learned that he had a rare disease called Glutaric Acidemia Type 1. This was found through newborn screening. She is happy to say that because of newborn screening and aggressive treatment he shows very few symptoms of the disease. After coming to grips with his diagnosis of this very rare disease Allison wanted to be a part of advocating to help address issues that her family has faced. She is a part of the Organic Acidemia Association and also a consumer task force member for Baby’s First Test.

Allison and her husband have one other child, Maryanne and live in Fair Haven, Vermont.


Event Coordinator Assistant
Lisa Deck is a married mother of two living in North Attleboro, MA. She is a longtime volunteer & advocate for the American Heart Association and served as a Go Red for Women National Spokeswomen 2014 - 2015. 
Lisa is an active member of her community and volunteers with the public schools, Girl Scouts and local organizations. She is the founder of Sisters@Heart, Inc., a non-profit dedicated to improving the lives of heart and stroke patients and their families. 

She is also a blogger and motivational speaker at ISurvivor Lisa Deck (www.lisadeck.com), sharing her personal story of overcoming four strokes, a rare brain disease and two brain bypass surgeries.

Since being diagnosed with Moyamoya disease in 2015, Lisa has become a passionate advocate for rare disease issues. She has lobbied at the local, state and Federal level for positive change for rare patients.
Most recently, Lisa has become a volunteer with Rare New England.



We would like to introduce and acknowledge our fabulous team of volunteers. Rare New England relies of the dedication of our Volunteers, whom are instrumental in carrying out our programs for patients and families. Their insight and efforts provide skill and support for conferences, social media, supply management, fundraising and more!
When Melissa Hoyt stated her education in the Psychology and Healthcare field, she no idea that at some point her health would change my course in life. While always having some variety of health problems the significance of it all wouldn’t be clear till adulthood. In 2008 she was diagnosed with a rare disease, Mitochondrial Disease, and goals and aspirations were changed as she learned to live with a complex disorder. 

Though life is different than she had once imagined, Melissa has found joy in various volunteer roles over the years while assisting in a health education library, joining a Community Emergency Response Team, and being a member of a Patient and Family Advisory Council at MGH; each one bringing their own opportunities for learning, collaboration and more. Melissa is also spent several years as member of the Boston Renegades Bleep Baseball team.

Melissa resides in MA with her fabulously handsome service dog Harkin.