MassFamilies Board of Directors

Please check the MassFamilies Calendar for scheduled board meetings.

Officers

Rania Kelly,
Co-Chair

MassFamilies has challenged me to imagine better, taught me how to advocate for my son, how to access supports, and pushed me to dream big for my little guy. My advocacy work is focused on equity and inclusion for individuals and their families navigating disability and chronic illness, with an intersectional focus on marginalized groups (BIPOC, immigrant, and LGBQ+ communities). I am a single mother, daughter of immigrants, woman of color, bilingual (Arabic/English), and specialize in culturally and linguistically appropriate outreach. I have a Masters in Architecture with twenty-five years of private sector experience, six years of non-profit experience, and am currently completing a Masters in Public Administration from Suffolk University. I currently serve as co-chair on the Commission of Disability in my town where I focus on expanding access and universal design.

I have been fortunate to have completed educational experiences that support my advocacy work such as graduating from the LEND fellowship from The Shriver Center’s Leadership Education in Neurodevelopmental and Related Disabilities, INP’s certificate in Nonprofit Management and Leadership from Tufts University, the Commonwealth Seminar’s six-week program on legislative and state budget process for community leaders, certified Charting the LifeCourse Ambassador, and certified Community Access Monitor from the Massachusetts Office on Disability.

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Keila Torres,
Co-Chair

Photo: Keila Torres, MassFamilies Outreach Coordinator

My name is Keila Torres. I currently reside in Western Massachusetts. I’ve been a Special Education Advocate for over twelve years, focused on Autism, I/DD, and other areas. I studied Deaf Studies at Holyoke Community College and later expanded my studies to Associate of Arts with a concentration in Early Childhood Education. I recently joined MassFamilies as an Outreach Coordinator for Spanish-speaking families. I want to help families to find their voice in their community and advocate for changes that make them inclusive in services and support for their loved ones with disabilities. I am fortunate to have the support of my husband, my two sons, and my daughter, who have multiple (dis)-abilities. In my free time, I like to spend time with my family, listen to music, read and watch superheroes movies with them.

Mi nombre es Keila Torres. Actualmente resido en el oeste de Massachusetts. He sido defensora de la educación especial durante más de doce años, enfocado en el autismo, I / DD y otras áreas. Estudié Cultura y lenguaje de Sordos en Holyoke Community College y luego amplié mis estudios a Asociado en Artes con una concentración en Educación Infantil. Recientemente me uní a MassFamilies como coordinadora de alcance para familias de habla hispana. Quiero ayudar a las familias a encontrar su voz en su comunidad y abogar por cambios que las hagan inclusivas en los servicios y el apoyo para sus seres queridos con discapacidades. Tengo la fortuna de contar con el apoyo de mi esposo, mis dos hijos y mi hija, quienes tienen múltiples (dis)capacidades. En mi tiempo libre, me gusta pasar tiempo con mi familia, escuchar música, leer y ver películas de superhéroes con ellos.

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Priscilla Bessa,
Clerk

Photo: Priscilla Bessa, MassFamilies Board Member

"I am a mother of three amazing, unique children. Two of them are neurodivergent. We are from Brazil and we live in Northborough. I have a degree in Education/Linguistics and I used to be a bilingual (English/Portuguese) teacher for 8 years. Our lives have completely changed after my second daughter was diagnosed with a rare genetic neurodevelopmental disorder. Her multiple disabilities and medical complexities were the main reason our family moved to the US in 2016.

Being an immigrant, living far from my support network in a country with language and culture different from mine, added to all the needs of a newly diagnosed child, were major challenges that we would face. This is how I started my journey as a parent advocate: learning to navigate the health and education system, seeking services and supports to provide a good quality of life for my daughter with a disability and to our family.

The need to connect with other families experiencing a similar reality encouraged me to found a support group for atypical Portuguese-speaking families living in Massachusetts. Our group, now called SuperParents, currently has nearly 250 families. Our mission is to provide opportunities for families to connect by sharing experiences and resources that will help to improve the quality of life of our loved ones with disabilities. We also promote social and recreational events for our families to interact and include the kids in community activities. We believe that awareness, acceptance, and inclusion are the keys for a better world where the differences are respected. Watching this group growing, friendships starting, people helping each other, families having a sense of belonging, nourishes my heart with a feeling of gratitude. My initial wish of offering the best for my daughter was extended for a bigger wish of wanting that for all kids with disabilities and their families, because they all deserve to have a better life.

Atypical motherhood changed me as a human being and changed the direction of my life. Everyday I dedicate my time in learning new things to help not just my daughter, but many other kids with disabilities and their families. I have attended to leadership trainings and disability related courses so I could improve my skills and develop a career in the human service field. In 2017, I graduated from Massfamilies metro region family leadership series. The same year I also completed the PCTI training for parent advocate at the Federation for Children with special needs. In 2020, my youngest child was diagnosed with Autism by the age of 2.

The next year I joined MassFamilies as a volunteer Portuguese outreach coordinator and also became a Charting the Life Course Ambassador. Recently I received a certificate as a Community interpreter and started LEND (Leadership Education in Neurodevelopmental and related disorders) fellowship at Umass/Shriver Center. Finally, this year I had the opportunity to offer the first Family Leadership Series in Portuguese with the support of Lauri Medeiros.”

“Sou mãe de três filhos incríveis e únicos. Dois deles são neurodivergentes. Somos do Brasil e moramos em Northborough. Eu tenho formação em Letras e costumava ser professora bilíngue (inglês/português) por 8 anos. Nossas vidas mudaram completamente depois que minha segunda filha foi diagnosticada com um raro transtorno genético do neurodesenvolvimento. Suas múltiplas deficiências e complexidades médicas foram a principal razão pela qual nossa família se mudou para os EUA em 2016.

Ser imigrante, viver longe da minha rede de apoio em um país com idioma e cultura diferentes dos meus, somados a todas as necessidades de uma criança recém-diagnosticada, eram grandes desafios que enfrentaríamos. Foi assim que comecei minha jornada como mãe advogada: aprendendo a navegar pelo sistema de saúde e educação, buscando serviços e apoios para fornecer uma boa qualidade de vida para minha filha com deficiência e para nossa família.

A necessidade de me conectar com outras famílias que experimentam uma realidade semelhante me encorajou a fundar um grupo de apoio para famílias atípicas de língua portuguesa que vivem em Massachusetts. Nosso grupo, agora chamado de SuperParents, atualmente tem quase 250 famílias. Nossa missão é oferecer oportunidades para as famílias se conectarem compartilhando experiências e recursos que ajudarão a melhorar a qualidade de vida de nossos entes queridos com deficiência. Também promovemos eventos sociais e recreativos para que nossas famílias interajam e incluam as crianças em atividades comunitárias. Acreditamos que a conscientização, a aceitação e a inclusão são as chaves para um mundo melhor, onde as diferenças são respeitadas. Ver este grupo crescendo, amizades começando, pessoas se ajudando, famílias com um senso de pertencimento, nutre meu coração com um sentimento de gratidão. Meu desejo inicial de oferecer o melhor para minha filha foi estendido para um desejo maior de querer isso para todas as crianças com deficiência e suas famílias, porque todas elas merecem ter uma vida melhor.

A maternidade atípica me mudou como ser humano e mudou a direção da minha vida. Todos os dias dedico meu tempo aprendendo coisas novas para ajudar não apenas minha filha, mas muitas outras crianças com deficiência e suas famílias. Participei de treinamentos de liderança e cursos relacionados à deficiência para que eu pudesse melhorar minhas habilidades e desenvolver uma carreira no campo do serviços humanos. Em 2017, me formei na série de liderança familiar da região metropolitana pelo Massfamilies. No mesmo ano, também completei o treinamento PCTI para país advogados na Federação para Crianças com Necessidades Especiais. Em 2020, meu filho mais novo foi diagnosticado com autismo aos 2 anos de idade. No ano seguinte, entrei para a Massfamilies como coordenadora voluntária de divulgação na língua portuguesa e também me tornei embaixadora do Charting the Life Course. Recentemente, recebi um certificado como intérprete comunitário e comecei a participar do programa LEND (Leadership Education in Neurodevelopmental and related disorders) no Umass/Shriver Center. Finalmente, este ano tive a oportunidade de oferecer a primeira Série de Liderança Familiar em português com o apoio de Lauri Medeiros."

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Lauri Medeiros,
Treasurer

I began my journey as an education, family and systems change advocate for children with disabilities and their families after attending the 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.

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Board Members

Ann Berube,
Central

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 & 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.

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Sue Crosby
West

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 United 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.

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Nicole Desnoyers
West

Photo: Nicole Desnoyers, MFOFC Board Member

Mom to 3 very special kids; Nakayla (13), Ja-Seir(10), and Miyah(5). I live in Springfield and have a passion for children's mental health awareness. I am devoted to seeing a community that focuses on the whole health...mind, body, and spirit.

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Loida Love Dominguez,
Northeast

Loida Love Dominguez MassFamilies Board Member

I believe in MassFamilies, and I believe in myself and what I can offer the MassFamilies communities. I feel that I can better support people because of my lived experience. As a mother of a child of special needs, as a woman of color, as someone that’s experienced rejection for myself and my son. As a woman of color I work with the BIPOC community knowing that there are layers of discrimination that happen for people, things are more challenging in getting support, services, and school. Some people are not getting the support that they deserve.

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Paloma Fernandes,
Southeast

I am originally from Cabo Verde. My upbringing in various European Countries has taught me to value, understand, respect, and embrace cultural diversity. I am a polyglot, speaking five languages and during my years as a student, I learned the sixth language, sign language. I am neurodiverse with an ADHD dyslexic brain. I was diagnosed as an adult and my own disabilities/different abilities drive my passion. My positive thinking, social-emotional, self-awareness, and immediate family support are part of my daily life. My intersectionalities and life experiences give me a unique understanding of diversity, equity, and inclusion as a whole. My ability to empathize, be vulnerable, and connect with people allows me to empower and give voice to those who might otherwise feel unheard or unseen. I am the co-founder of United Communities an organization that evaluates needs and connects individuals to resources. I am the parent of two neurodiverse children a 15-year-old daughter and an 11-year-old son. Both have an ADHD dyslexic brain, but the three of us are very different they both have sensory processing disorder and anxiety that again presents very differently. My daughter internalizes while my son externalizes. My son also has a communication disorder and my daughter has something that goes unrecognized by so many that it is not even taken into account when trying to come up with a plan to help the person in their daily lives, not even acknowledged for IEP even though it affects the way she learns. She has Chromesthesia a form of synesthesia that means that she sees sound. My children are my biggest teachers I have learned more about myself and people by raising them and trying to find ways to communicate, engage, teach and understand their needs. We live in a world where we will never fit in it is a difficult balance to teach self-love when everything says something is wrong with us. This is why I have so much passion, we are neurodiverse we have challenges and strengths for some things we need support for others we do not. None of this should exclude anyone from living their best life within society. None of these are excuses but all of them are reasons therefore we make our own paths and help others do the same.

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Jaya Pandey,
Central

Photo: Jaya Pandey, MassFamilies treasurer

Jaya Pandey is a 2017 graduate of the Family Leadership Series. She lives in Franklin, MA with her husband (Ashish) and two sons (Ajey) and (Anand). Anand is on Autism Spectrum.
She has a master’s in Chemistry and has worked as a high school teacher in India. Jaya lived in Singapore before moving to the United States.
She works as a Business Analyst in a finance firm. She has multiple interests and is passionate about writing, cooking, music, traveling and connecting people to one another . She writes about various issues on her two blogs and for various organizations . In 2015 she became a part of the 100SareePact and since then she has used Sarees as a medium to talk about social causes, disability and life as an immigrant woman and a Special Needs child’s mother. She is very involved in the Indian community in MA and has been working on raising awareness about special needs and Autism.

From personal experience and her own journey she has made it a mission to help Indian moms with Special Needs Children. She truly understands how isolated, confused and overwhelmed a mother can feel when her child gets diagnosed.
She founded “Desi Moms Network” a Global Community that connects Indian Moms with Special Needs Children to encourage them to be each other’s combined strength, support and resource.

Her blogs are MomLovesAnand.Blogspot.com and
Jayapandey.blogspot.com

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Amy Peters
Southeast

I am a strong advocate for myself, my children, grandson, and my community. All three of my sons (18, 22, 26) have Learning Disabilities, Dyslexia, and Mental Health issues. My grandson has an autism diagnosis. I feel that our indigenous parents are not getting resources. They need more advocacy. I would like to be a leader for the indigenous people in the state to advocate for my community. Currently, I serve on the board of the Cape Cod status of Women and Children.I work with the Special Needs advocate for the tribe to help tribal kids on IEPs. I have also worked with MoveOn.org. I have spoken at local women marches. I have done public speaking on immigration, mental health, disabilities, and IDD.

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Haran Phaneuf
Central

I have always had a passion for education, empowerment, and advocacy. Before becoming MassFamilies' Central Regional Coordinator, I worked in higher education for 15 years developing synergistic leadership programs for university honors students from diverse backgrounds. Additionally, I served for seven years on the National Honors Collegiate Council's Education of the Gifted Committee promoting awareness within higher education about how to identify and educate gifted students with learning differences.

As an individual with attention deficit hyperactivity disorder (ADHD) and a parent of a child with autism (ASD), I know firsthand how important it is to connect with other families in order to cultivate a caring, informative, and responsive support system. As a past participant in the Family Leadership Series, I was inspired by hearing other families’ stories and motivated by our shared journey, igniting a desire to empower and support others navigating the challenges and complexities of having a special needs family member.

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Lisa Sims,
Metro

I am a single mother of an adult son with disabilities. I had a stroke a few years ago and now as a result I have disability challenges myself. My family has been struggling with isolation, lack of services, and lack of social support since the start of the pandemic.

My son and I are both Charting the LifeCourse Ambassadors. I want to make sure Black American families like ours have access to Supported Decision making. I want my son and I to continue strengthening our Family and outreach to the Black American Community. When I go to trainings usually, I’m the only Black person there, I am hoping I can change that.

I think my life experience as a single mother, Black American, a person struggling with disabilities, and a mother raising a Black Autistic adult will bring a perspective and voice that is often missing in the conversation.

I hope that I can help bring a voice to the table that usually isn’t there. That I can share the struggles that families like mine are having. I also enjoy telling my families story and I believe I would be a compelling advocate for pushing legislation and making change.

I believe telling your story is how to win hearts and minds to change policy and the system. I want the system to work for families like ours.

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Brian Sullivan

Coming soon

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Advocacy for MA DDS Self-Directed Services as envisioned by the 2014 Real Lives Law