RNE Staff

The RNE staff works hard to make our day-to-day operations go smoothly, whether it be communication and outreach through our social media channels or assisting in setting up our major programs. Our conferences, talks, and meetings happen because these individuals help make them so.

 
 
 

Nicole White

Executive Director

Nicole White is a certified Community Health Worker who has over six years’ experience working in nonprofit management within organizations that support those living with rare and complex health conditions. She also has over eleven years’ experience in medical administration and management, while working at a local level one trauma center in Rhode Island. Most recently, Nicole was the Director of Program Services at A Wish Come True, also in RI, where she advocated for more family and patient involvement and assisted in expanding their mission to now providing much needed wellness and hardship programs for those whom they serve. With this work along with her previous advocating experiences, Nicole was nominated and awarded as a recipient of Providence Business News “Forty Under 40” Program in 2021.

  • Nicole also has personal experience in the rare disease space as her son was born with a rare birth defect called Gastroschisis (while in utero, the abdominal wall does not close completely, leaving the intestines and sometimes other organs to develop on the outside of the body). In April 2012, Nicole’s son Kyrie was born with the majority of his small intestine, liver, gall bladder, and part of his stomach on the outside of his body. Six days after he was born, surgeons removed the majority of his small intestine, leaving him with a diagnosis of Short Bowel Syndrome aka “SBS or short gut” and dependent on IV nutrition as well as a feeding tube to survive. Nicole is also an advocate for her husband Garrick, as well as other family members living with complex medical conditions. She is happy to say that both her son and husband are both thriving and doing well.

    In 2016, Nicole founded a local nonprofit called the Short Bowel Syndrome Foundation for Children of New England (SBSNE) in which she partnered with a fellow SBS mother from CT to fulfill the mission. While the npo still exists, it is currently not active. During their efforts, SBSNE supported multiple families providing them with resources such as monthly stipends for nutrition support, assistance obtaining medical supplies, and connecting families to resources to name a few.

    Nicole has also served as a member of the Family Advisory Council for Hasbro Children’s Hospital in Providence, RI since 2014.

Melody Joy Paine

Program Assistant

Melody Joy Paine is a dedicated advocate for the rare disease community. Through her business, Imperfect JOY®, she empowers rare patient advocates to share their stories, fostering meaningful connections beyond diagnoses. Recognized for her impactful work, Melody was honored with the Sony Alpha Female+ Grant in 2022, among only 24 recipients worldwide. She is also a talented photographer and filmmaker, with her film "From The Heart" screened at Global Genes' Rare Health Equity Forum. As a social impact producer for a documentary about rare disease, she hopes to help bridge the gap between those “outside” of the rare community to those personally affected by it so everyone can work together to fight for policy change that these patients and families so desperately need and deserve to access treatments and cures.

 
 
 
 
 
 

Ashley Kennes

Social Media Coordinator

Ashley Kennes is a New England native and began working as the Development Consultant for RNE in February 2019, since then she has moved over to the role of Social Media Coordinator. She is a certified Genetic Counselor at Maine Medical Center and enjoys seeing patients in the cancer risk and prevention clinic. In the past, she has volunteered her time to other non-profit organizations by planning and participating in the Relay for Life for the American Cancer Society and Dance Marathon for the Children's Miracle Network. When not working, Ashley likes to play volleyball, read, and spend time with friends and family.