About Us
DSIA was founded in 2004 by three families seeking greater access to support, information, and services in our community and empower individuals with Down syndrome in the Sacramento and surrounding areas. Since then, we’ve grown as a dedicated non-profit organization serving Sacramento, Yolo, Placer, El Dorado, Nevada, Yuba, Shasta, Solano and Sutter counties.
Our Mission
The Down Syndrome Information Alliance provides support and resources to empower individuals with Down syndrome, their families, and our community.
Our Vision
We envision a community where people with Down syndrome are empowered, respected as individuals, and accepted as valued participants in neighborhood schools, community activities, and the business world.
Meet the Board of Directors
Lisa Lilienthal, President
By the time Lisa’s second child, her son Cooper, was born in 2001, Lisa had navigated the world of disability for nearly 40 years. She’s used a wheelchair since age 8, when she was paralyzed by a spinal tumor. A lifelong advocate for inclusion, Lisa joined the DSIA board in 2024 and accepted the nomination to chair the board in January 2025. Lisa has served on the board of the Down Syndrome Association of Orange County, helped co-found Women Empowering Sacramento, and served on the board of Purple Tree Cafe, a a non-profit organization based in Davis, California that creates community-based employment for people with disabilities. She works as a brand and creative strategist and has deep experience in guiding mission-based B2B brands to bring relevance and attention to their stories, and in elevating big thinkers to write their stories through her book consulting services.
Michelle Guillen, Vice President
Michele and her husband live with their four children in Natomas. Anthony, their youngest and said to be the favorite was born in 2016 with a prenatal diagnosis of Down Syndrome. Working in the medical field, Michele was surprised how unfamiliar the medical community is with appropriate, person first language and how many families do not receive the diagnosis of Down Syndrome in a positive light. She joined the DSIA in 2023 with big goals to work with the medical community in creating a positive experience for new families receiving a diagnosis of Down Syndrome. Michele enjoys spending time outside with her family, watching her kids play sports and time with friends.
Lisa Sotelo, Treasurer
Lisa Sotelo joined the DSIA board in 2022 and also serves as the organization’s Treasuer. Her and her husband Matt have three children, Evelyn, Emily and Eli. When they received a pre-natal diagnosis for their now 6 year old Emily, DSIA was instrumental in providing accurate information and a safe place to talk. Lisa now enjoys being a resource for parents within the Down syndrome and overall special needs community. She is passionate about inclusive practices not just for the benefit of students with intellectual disabilities but for all students to be seen as individuals for their uniqueness. Lisa also serves as a Board Member of the San Juan School District Community Advisory Committee. She enjoys attending Girl Scouts, gymnastics and soccer with her children. Lisa is an attorney with the State of California.
Nancy Muir, Board Member
Nancy and her husband Alastair live in Rocklin with their three children. They began gathering information about Down syndrome when they found out their daughter, MacKenzie, was carrying an extra 21st chromosome before she was born. They realized from the beginning that their daughter would and could do anything and everything everyone else does, and it is that attitude that has pushed them and their daughter to not let anything hold her back. Nancy works for Placer County, is a Girl Scout Troop Leader, loves driving her son all over Northern California to watch him play soccer, and enjoys relaxing with her family.
Amie Garrabrants, Board Member
Amie lives in Sacramento, with her husband and 3 daughters. She is a stay at home mom and focuses her time and energy on providing a nurturing environment for her daughters. Their youngest daughter Eden was born in 2020 during the Covid pandemic. Eden was diagnosed with Down Syndrome at birth. Due to the pandemic Amie and her family were not given very much information regarding their youngest diagnosis. They were left with a lot of uncertainty and questions. DSIA sent a comfort package and opened the door to the new possibilities in store for Eden. DSIA supported Amie’s family in a vulnerable moment. This gave Amie a passion to help other families in need. She wants to make sure when a family receives a Down Syndrome diagnosis they receive at much support and comfort as they need.
Jane Johnson, Board Member
I hold B.S. and M.S. degrees in Speech Pathology from California State University, Sacramento, and have clinical experience across various settings, focusing on early intervention, Down Syndrome, apraxia, autism, pediatric therapy, and parent education. I owned a private practice in Elk Grove and Roseville, CA, from 2010 to 2022, and previously served as Area Manager for EBS Healthcare, overseeing training and supervision of clinical staff. I have received seven ASHA ACE awards, served on the Down Syndrome Information Alliance board, and held leadership roles in the Sacramento Area Speech and Hearing Association. Additionally, I am involved in ASHA’s mentorship program and specialize in working with students with apraxia, featured on the Apraxia-Kids and PROMPT websites.
Meet DSIA’s County Representatives
Rosalinda Grey, Yolo County Rep
A passionate advocate for children and families, Rosalinda is eager to resume volunteering with DSIA and supporting Yolo County after a brief hiatus. She is looking forward to engaging in upcoming enjoyable events. Rosalinda became a part of the Yolo Crisis Nursery in 2009, taking on various roles such as on-call staff, family life-skills coach, preschool teacher, and supervised-visitation monitor. She is a mother of three children: her 17-year-old daughter Isabella, her 12-year-old son Dorian, who was born with Down syndrome, and her 7-year-old son Drevan. Rosalinda and her husband Anthony reside in Woodland, California. Anthony, a tattoo artist, also volunteers for events with the DSIA. Rosalinda decided to stay home to care for her son for some years. In 2017, she rejoined the Yolo Crisis Nursery as a family specialist and has recently been promoted to program manager. Rosalinda is known for her immense compassion and dedication to children and families. Throughout her years at the nursery, she has shown unwavering commitment to supporting all at-risk children, with a special focus on the most vulnerable and those with diverse abilities. Actively involved in the Down Syndrome Information Alliance (DSIA), Rosalinda has previously held the role of president and board member in the organization. She has been instrumental in organizing classes and events for siblings of children with Down syndrome and autism, as well as individuals with various diagnoses. Now, she is passing on her knowledge and skills to the clients of the Yolo Crisis Nursery.
Amy Jean Christy, Yuba/Sutter County Rep
Amy Jean Christy
Hey there! I’m Amy Christy, a proud Yuba-Sutter native with a heart full of love for family, adventure, and making a positive impact. My journey began at the Sutter High school Football field, where I met my high school sweetheart. Many years later we were married and had our son. Just when we thought our family was complete, destiny had other plans. In February 2023, we joyfully embraced the role of guardians to my twin niece and nephew, becoming part of the Lucky Few. My life is a delightful chaos of raising 3 kids, supported by the wagging tails of four large dogs and the playful antics of our feline companion. While life’s twists and turns can challenge our routines, my dedication to an active and healthy lifestyle has been unwavering since August 2021. Balancing macros, workouts, and now the delightful chaos of twins, I’m on a daily mission to regain my consistent diet and activity level. When possible, you’ll find us in our happy place—camping and connecting with each other and nature. I also have a sweet spot for baking; whipping up delicious treats brings me immense joy. Let me know if you need an excuse to savor something delightful! Guided by a passion for helping others, I’ve embraced my advocacy role. Everyone deserves to be included and loved. From furry friends to fitness tips, and even a supportive mom tips, I’m here to support and uplift. Don’t hesitate to reach out if I can lend a hand in any way! Life is a beautiful mess, and I’m here to make the most of it, one adventure at a time.
Robin Kailihiwa, Yuba/Sutter County Rep
I am a mother to a 10 month old son. Having my son has fortified my passion for inclusion. All people have the right to outstanding education, no matter their neurodiversity. Working as an infant/toddler teacher allows me to continue to teach young children through a play-based environment. An environment that supports growth, builds self-esteem, and helps all children build strength through play. I have been working with children of all ages for 15 years in the Yuba-Sutter area. I have my AS degree in Early Childhood Education, along with numerous years of training and self-education.
Sabrina Smith, Yuba/Sutter County Rep
Hello! it’s Sabrina – your friendly neighborhood multitasker! At the age of 34, I’ve got a day job as a corporate recruiter over at Ampla Health. But the real adventure unfolds at home. I’m happily married, and my heart belongs to a pint-sized superhero – my 4-year-old with an extra sprinkle of charm, rocking that extra chromosome like a badge of honor. Parenting? Oh, it’s a wild ride, especially when we try to unwind after our day of adventure. One thing I have been taught that I can practice anywhere, is patience. Everyday is new and each day deserves its own attention
Sean Nelson, Yuba/Sutter County Rep
Hello! My name is Sean Nelson. I own and operate a personal training studio, and am a husband and father. My son Auron is 4 years old and has Down Syndrome. Being a new father was scary enough, but finding out I would be a father to a child with a disability was something I never expected. Having said that, Auron is the love and joy of each day. Being a father to a child with DS is incredible and has allowed me to learn so much about myself. Ive grown a passion for wanting to help parents of DS children, and helping them know, its going to be ok. My wife and I have worked very hard for Auron to be as successful as he is at 4 years old, but that should be every parents goal, to help your child succeed to the fullest. Being a personal trainer, and being in the gym since i was 13, I am a strong believer that anything is possible, and limitations are only those that we create. I believe my son is capable of anything, as long as no limitation is created for him and I believe that for any child, regardless of a disability.
Heather Scott, Program Coordinator
Please help us WELCOME Heather Scott as our newest DSIA Program Coordinator! Heather is excited to be back with our DSIA family. Heather is one of the original founding members of the Down Syndrome Information Alliance. She took a couple years off to spend some time with family as her older kids were leaving for college. Together with her husband, Andy, they have six kids. Heather’s oldest child is Gabby, she is 23 years old and has Down syndrome. Gabby works full time at Futures Explored, a film & media company. Heather and Andy have 3 other children in college and 2 in high school. In addition to Heathers work as program coordinator with DSIA, she is a full-time Infant Educator with the Sacramento County Office of Education Infant Development Program. Prior to Heather’s work in the disability community, she worked for Sacramento County as a Deputy Sheriff. Helping people is what Heather does! When she’s not busy working, she enjoys watching her kids play baseball, soccer, lacrosse and swim. Heather enjoys spending time with her dogs Hank and Bex and watching the LA Dodgers play baseball. Heather is so happy to be back helping families in the Down syndrome community and looks forward to empowering more individuals with Down syndrome in the Sacramento and surrounding areas.
After experiencing the educational, social, and support benefits offered by other Down syndrome advocacy groups around the country, the Bermudes, Prieto, and Linn families – each having a young child with Down syndrome – formed the Down Syndrome Information Alliance. Together, with Sally Dominguez (whose granddaughter has Down syndrome) and Nicole Besoyan (whose daughter has Down syndrome), these families served as the founding Board of Directors. DSIA became affiliated with the National Down Syndrome Congress and the National Down Syndrome Society and began providing community services in late 2004. By mid-2005, DSIA had connected with local hospitals and became the local source of information for medical professionals and parents. In our first year, DSIA distributed 150 parent guides!
DSIA now provides regular educational symposia, resources, support, activities, and myriad programs for the Down syndrome community.
DSIA is currently accepting applications from individuals interested in serving on the Board. We are currently seeking members with the following interests, expertise, and skills:
- Self-advocate (must be 18 years or older)
- Fundraising/development
- Grant writing
- Education
- Health care professional
Above all, the board needs folks who want to empower individuals with Down syndrome in the Sacramento and surrounding areas.
For more information contact volunteer@downsydromeinfo.org
Past DSIA Presidents and Executive Directors
These individuals have worked to empower individuals with Down syndrome in the Sacramento and surrounding areas.
Board Presidents
Nancy Muir (2021-2023)
Geralynn Moore (2020-2021)
Rosalinda Gray (2016-2020)
Heather Scott (2012-2016)
Lisa Lindsey, Ph.D. (2010-2012)
Dana Garel (2009-2010)
Samantha Smith (2008-2009)
Heather Green (2004-2008)
Executive Directors
Allison Olson
Elaine Linn (2008-2009)