Bios

Officers & Regional Coodinators


Ann BerubeAnn Berube, Board Clerk

My parenting journey began 31 years ago. I was a work-at-home wife, and mother of three very unique children. In 2004 I participated in Massachusetts Families Organizing for Change (MFOFC) Family Leadership Series (FLS) and my family was forever changed – we began to imagine a better life. The FLS connected me with families who were supporting children that had various diagnoses, and a network of individuals and organizations that could help each other. I wanted to give back, so for several years, I volunteered to learn from and help mentor other FLS families. With others, I chaired our school district’s Special Education Parent Advisory Council while my children were in school. My current position as Prevention Specialist at Y.O.U. Inc.’s Family Support Center in Gardner, allows me to offer bi-weekly support groups, and help families find tools and resources to navigate systems and advocate for their family’s needs. I volunteer on the Board of Directors for MFOFC, the North County Site Advisory Board for the Department of Mental Health, the Department of Developmental Services (DDS) North Central Citizen’s Advisory Board, and Massachusetts Down Syndrome Congress Advocates in Motion Advisory Council. I do all this while supporting my daughter’s DDS Agency with Choice Adult Service Program and her local, regional & statewide self-advocacy efforts. I hope to continue to learn from my children, and the ever growing community of support and inspiration we receive from those we have met along our journey.


Celia Brown, Central Regional Coordinator, Board Member

I was educated to educate. I have worked in public and private schools with K-12 students and in the Human Service Department at Quinsigamond Community College in Worcester. Serving as the DDS Children’s Service Coordinator for six years was an invaluable experience. It was a building time for the department as we started to more actively serve children. I have worked with Self Advocates teaching them to better speak for themselves and developed many programs that continue to enrich the lives of individuals with disabilities and their families. The C.A.R.E (Chi ldren’s Art and Recreational) program and Horizon Theater Program are still offered in the Worcester area. High School volunteers are paired with school age children as they share two hours on Saturdays exploring the arts and recreational activities. With the birth of our youngest son, now 35 years old, I embarked on educating myself about special needs. Parents I have met on our journey have taught me. Medical Professionals have taught me. Educational Professionals have taught me. Our son has taught me tolerance, perseverance, to always be hopeful, to laugh a lot and that there is always more to learn. It takes a village. I am delighted to be part of the MFOFC and HMEA villages as we work to empower families with education and trainings that will enable caregivers to help their children and work to support federal, state and local initiatives and policies that affect the lives of those we love.


Sue CrosbySue Crosby, West Regional Coordinator, Board Member

I am a mother of two 18 year-old sons with autism, a former paraprofessional and parent advisory council member, and an active Parent/Caregiver Group member at the Unted ARC in Franklin County. I have also organized and attended numerous legislative events to discuss the needs of those impacted by developmental disabilities.

As a licensed social worker, I enjoy helping caregivers recognize their unique strengths, and discover ways to use them to help advocate for their families. I am always inspired by the spirit, resilience, and determination of parents and caregivers. I look forward to every opportunity to support and learn from them.


Kathi HackettKathi Hackett, Board Member

I have been providing Family Support Services through Martha’s Vineyard Community Services for almost 30 years, supporting families living on Martha’s Vineyard and Nantucket. I was one of a small group of providers who founded the first Family Leadership Series in southeastern Massachusetts 25 years ago and became an MFOFC Board member at that time. My vision is that all communities will be welcoming and provide a diverse array of experiences for a rich full life for all of its members.

 


Sandra HellerSandra Heller, Board Member

I live in Fairhaven and am the proud mother of three grown children. Craig is 28 years old and was born with Down syndrome, Christina is 27 and Kathryn is 21. I have lived in Massachusetts for the past 29 years I am originally from Connecticut. I lived in Marion, MA and my children grew up and attended school in the Old Rochester Regional School District. All my children were fully included in our school system and were able to experience and grow up in a small town that valued and accepted everyone. I have also had the great experience of working for Nemasket Group Inc. located in Fairhaven for the last 23 years. I currently am the Associate Executive Director of Nemasket and am proud to say, the Director of Family Connections, the family support agency in the Greater New Bedford Area. I became involved with MFOFC 20 years ago, first as a parent that attended the Southeastern Family Leadership Series and then around 10 years ago became a Board member with MFOFC. Currently I am a board member and serve on the board development committee on this grass roots family organization.


O. Sophia JohanssonO. Sophia Johansson, Northeast Regional Coordinator, Board Chair

I first connected with Mass Families in 2013 when I attended the Family Leadership Series. I entered as an economically vulnerable single parent to a young child who had recently been diagnosed with a developmental disability. Two years later, I was happily partnered and welcoming the birth of my second child — and rolling out the inaugural round of Advocacy Bootcamp! The family and life I have now is a direct result of the visioning process I underwent through the Family Leadership Series. In my role as Board Chair (hopefully soon to be accompanied by a co-chair!) and Northeast Regional Coordinator, I am in the position to empower other families to articulate and realize their own visions. I bring to this work my life experience as both the child and parent to an individual with disabilities, a passion for social justice, and a talent for bringing people together to accomplish individual and shared goals.


Kishore KatikireddyKishore Katikireddy, Board Member

I was born and brought up in India (south), had a wonderful journey from India to Ireland for my Ph.D. in life sciences. Moved to the USA in early 2011 with my better half Sree. We had our first adorable child and now we are a complete family with a second child in 2015 a bossy sister for a big brother, our first child has a developmental disability; and he changed our lifestyle in all positive aspects. I first connected with Mass Families in early 2016, with Family Leadership Series. This is a life turning event for my family when we were facing challenges in every aspect from school to medical/therapy issues. The series brought us resources educational, healthcare and agency provider systems that are important for our child. With the motivation from leadership series, I have learned so much about perseverance, courage, love, and hope for the future. I would like to bring same to the families who need support and joined MFOFC as a board member and look forward to helping families to bring meaning to their life.


Laurie MadeirosLauri Medeiros, Metro Boston Regional Coordinator, Board Member

I began my journey as an education, family and systems change advocate for children with disabilities and their families after attending the MFOFC Family Leadership Series in 1998. My real life journey continues to this day advocating for children with disabilities and their families to embrace, navigate, improve and integrate all systems including the educational, health care delivery and agency provider systems so that we can all work collaboratively toward a common goal. Equally important, I believe that the family’s voice should be heard and that the family’s expertise be valued and fully integrated in decision making at all levels including the level of care as well as in local, state and federal policy decisions. I believe that every child and their family should be able to live, play and easily access community, health care, family supports, a meaningful education and independent life options.


Shannon MoesaaShannon Moesaa, Treasurer

I have had the wonderful opportunity to benefit from the efforts of the MFOFC twice in the last several years – in 2012 I participated in the Family Leadership Series and in 2015 I participated in the first Advocacy Bootcamp. I am looking forward to supporting the mission of the MFOFC as the Treasurer and giving back to the organization that has been so supportive of my family. I live in Duxbury with my husband Henrik and my daughter Isabella. Isabella is six years old and has Down syndrome. She is an amazing little girl who has introduced our family to so much joy and to an amazing community that we are proud to support. In addition to attending as many meetings and conferences to learn as much as I can, I have been actively involved with our town’s SEPAC for several years and was recently elected to Duxbury’s School Committee.


Emily Murgo NisenbaumEmily Murgo Nisenbaum, Southeast Regional Coordinator, Board Member

Emily is the mother of two children; Josh, who is married to Tina and Amy, who has what she calls “Up” syndrome. She is the widow of Louis Nisenbaum, the founding Executive Director of the Nemasket Group and a visionary in the disability field.

Emily is a founding member of Massachusetts Families Organizing for Change. She was its Chairperson for 13 years and remains active on the board. Emily was instrumental in the development of the SE MA Family Leadership Series and has coordinated and facilitated the Series in the SE for over 25 years.

The foundation for Emily’s work has been a deep love and respect for her daughter and other individuals and families who are on the same journey. Her goal is to create and/or find opportunities for individuals and families within their communities so that individuals and families can, as much as possible, live “ordinary” lives. Emily has had the privilege of traveling in the US and abroad to work with families and has delivered keynote addresses and presentations at conferences throughout the United States and in the United Kingdom. She is the very humble recipient of the 2005 Gunnar Dybwad Award presented by the Department of Developmental Disabilities.


Darcy RubinoDarcy Rubino, Board Vice-Chair

I began my work in the world of disability in 1996 when my daughter was born prematurely after suffering a stroke in utero. As most families experience, I started out knowing very little about special needs advocacy and leadership, outside of the instinct to protect my daughter and give her every opportunity to succeed and have an enviable life. By the time my second daughter was born prematurely in 2003, and later diagnosed with autism and a host of mental health challenges, I was already navigating special education, coordinating resources, and starting to pass on my experiences to help other families. Today, I am a proud graduate of the Family Leadership Series, and have been brought back to speak to new FLS families as well as to Advocacy Boot Camp attendees. My career has taken me in many fulfilling directions, and I am currently employed as the Director of Family Connections at Walker. I am excited to serve as the MFOFC Board Vice-Chair and hope to be able to help other families in this role as my esteemed MFOFC predecessors have before me.


Lisa Schouten, Board Member

I began my journey in New York when my son was diagnosed with autism at age 2. I served as the lead of our school district’s Special Education Parent/Teacher organization for six (6) years, establishing fundraisers to fund social groups and served as the parent representative in the hiring of new Special Education Administrators. I worked alongside other parents in establishing the region’s first Autism Resource Fair. I worked for Best Buddies NY for 5 years building Long Island’s Best Buddies programs across my region. One of the first groups I reached out to when we moved to Massachusetts in 2011 was MFOFC. I attended the Family Leadership Series and was inspired to be surrounded by like-minded families who believe in reaching higher for our family members with disabilities. I have since joined the MFOFC Board of Directors, as well as the North Central DDS Citizens Advisory Board and am a member of the MA21 Alliance Group.


Mandee Spittle, Statewide Coordinator