Regional Representative Program - SATB2 Gene Foundation

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Medical, informational, and family resources.

Regional Representative ProgramBrett Garwood2023-11-06T16:17:04-05:00

FAMILY SUPPORT REPRESENTATIVE PROGRAM

The Family Support Representative is a parent, caregiver, grandparent, or other SAS family member representative for the state or region in which they live. They act as a liaison between our families and the SATB2 Gene Foundation. They are also the point of contact for families in their state or region for general questions, guidance and support through and about the diagnosis of SATB2-Associated Syndrome (SAS) and the resources needed to navigate the needs of an individual with SAS. If you would like to get connected to the Family Support Representative in your state, please click on the interactive map below to read more about them and to contact them directly. If you do not have a representative for your state, you may contact Jenna at FamilySupport@satb2gene.org and she will assist you or get you connected with someone who can.

If you do not have a representative in your state and you think you may be interested in filling that role, please contact Jenna at FamilySupport@satb2gene.org.

Linda Banares

Hi There! I live in the San Francisco Bay Area and am mom to two children, ages 9 (my SAS kiddo) and 7. I love being a part of the Foundation’s work, as I’ve learned so much from this SAS community that has helped me become a more well-informed advocate and supporter for special needs.
Our California team of Regional Reps holds frequent meetups, and we hope to get to meet and connect with you soon!

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Nancy Dadino

My name is Nancy Daddino. My family and I live in California in the Fresno area. My daughter Camryn was diagnosed with SatB2 when she was 18. She is now 24 and enjoys swimming, fishing and spending time outdoors. Camryn has two brothers, one older and one younger. I enjoy being a regional representative because I know how important connection can be. When my daughter was diagnosed and I found the SatB2 foundation I was very grateful to talk to parents who understood our situation.

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Irma Valdez

My name is Irma Valdez and we are family of 4. We live in Souther Californina in city of Chino Hills. We have SATB2 little girl and her name is Mila Valdez who is 8 years old. Our son is Esteban is 12 years old and we also have a chocolate Labrador. We enjoy the outdoors, camping, and the Beach. Mila loves books, music and food. Mila was diagnosed when she was the 3 years old. We were lost and hopeless not able to find any help for her. I thought we were the only family here in California, until I was able to connect with Allison. Allison connected to us with Linda Banares who lives in San Francisco. We drove 7 hours just so we can meet other families who are walking on this journey. Walking out from our first meet up made us feel a little better knowing that we are not alone. We love Mila and would never change her.

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Rachel Ward

Hi everyone! My name is Rachel and I’m from Massachusetts originally but live in Palm Coast, FL. I have moved back and forth between Massachusetts and Florida three times over the last five years. I’m a single mama to Lincoln. Lincoln and I have been on quite a journey so far! He had a NICU stay and a NG tube when he was born, has done PT, OT, Speech therapies since birth, had some aspiration issues and a second NG tube as well as feeding therapy, he was born with brain bleeds and his arm was injured in-utero. He currently has SMOs with a hinged AFO component and recently received a secondary Autism diagnosis. We have seen almost every specialist I can imagine and Lincoln has endured many medical visits and tests. He has an IEP and attends a public preschool program and is flourishing! I grew up in this world and I have an older brother who has Trisomy 18 so I understand both the sibling role and the parent/caregiver role. Feel free to reach out and ask about our journey!

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Cassandra Mesnick

Cassandra Mesnick is a wife and mother of three. Cassandra and Gary’s youngest child, Justin, has SatB2 Associated Syndrome. Cassandra and her husband raised Justin not knowing why he was delayed and nonverbal for 19 years. She understands firsthand the feelings of having a child with a disability and wants to support other families on a similar journey and increase SATB2 Awareness. Cassandra and her family have lived in Ocala, Florida for 28 years and spend time in the Jacksonville area as well. Cassandra has been an advocate for people with disabilities since 2000 as a counselor, educator, and behavior analyst. When Cassandra is not helping people with disabilities, you can find her with her family, riding horses and spending time at the beach.

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Srikant Murty

I am Srikant Murty. I live with my family of four in Lake Zurich, IL. My family includes my wife Shailaja, son Ishaan (12), and daughter Sanjana (9). Sanjana was diagnosed with SATB2 about 5 years back. She is a happy and bubbly kid who ensures all of us keep smiling. She adores her brother and is extremely protective of him. All of us manage our daily routine around Sanjana’s activities and therapies.

We would like to connect with other families to share our journey, talk about resources that have worked for us as well as learn from their journeys.

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Pamela Eggerman

Hi, this is my family! We live in southern Indiana. I am beginning my 24th year as a teacher (the past twelve as a special education teacher) and my husband, Brian, has spent just as many years working in the landscaping industry. We have one 8 year old daughter, Lydia. She will begin 3rd grade when we return to school and is super excited for the year ahead! Our journey to a diagnosis of SATB2 Syndrome took awhile. We received the diagnosis in July 2019 when she was 4 years old. Lydia met all of her major milestones and the only glaring red flag was her lack of expressive language. After many tests and seeing many specialists to rule out other reasons, it was finally decided to complete a genetic panel. At the time of our diagnosis Lydia spoke approximately 15 words. Today, Lydia continues to amaze us with her gains in verbal expression and is speaking in sentences and reading at grade level. She is still extremely shy but will open up and be herself around family and her close friends. She attends multiple speech and language therapies a week as well as occupational therapy. She has been able to conquer all the goals that she has set – it might take longer and take a curvier path but she gets there! We are a very active family! Whether it’s swimming and bike riding in the summer or snow skiing during the winter months. We love being outside and we love to always be together! We are avid Cincinnati Reds and Cincinnati Bengals fans! Lydia continues to try and convince us that we need a dog named Who Dey to join our 17 year old cat Bengal! We are looking forward to connecting with other Indiana families!

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Kortney Lee

My name is Kortney, I am married to my husband Eric, and together, we are the parents of three boys, our oldest Cedric, middle son Liam (my SATB2 warrior), and my youngest Evan. We live in Hillsdale County Michigan, where I am currently a stay at home mom, and homeschool my oldest and youngest. Educationally, I have my bachelors degree in Political Science, with minors in Economics, and German Language and Culture, from Adrian College. In addition to volunteering with the SATB2 Gene Foundation, I am a huge advocate for those with rare diseases. My advocacy experience includes, participation in meetings with my elected officials, working with other organizations on policy changes and reform, and so much more. I have served on the board of other nonprofits, and have led the way in fundraising events for those nonprofits. On a personal level, I love college football (GO BLUE!), enjoy gardening, and am a master food preservationist.

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Tiffany Krueger

My name is Tiffany Krueger. I am the mother of 4 lovely kiddos. I live on the eastern side of Minnesota right on the border to Wisconsin. Kalli, my oldest is my SAS Girl, she is 12 years old. She also has another rare genetic disorder much more rare then Satb2 called Camta1. Then I have my 11 year old, Kyler. He has ADHD and is on the autism spectrum. I also have a 7 year old with Camta1 named Kayden and a 5 year old named Kaleb with Camta1. We take things by day in our house due to all the challenges. My past times I enjoyed going camping, photography, and crafting. I spend a lot of time advocating for my kids and always put them first above all else. I am excited to be a representative for Minnesota and hopefully we can arrange some get-togethers.

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Alyse Loomis

My name is Alyse Loomis and I live in a suburb of the Twin Cities. My husband and I have two children, Ryker(6) and Kaiser (4). Ryker was diagnosed with SATB2-Associated Syndrome right before his third birthday. I currently work in the Commercial banking industry. In my free time I enjoy gardening and attending my nieces and nephew’s athletic events. We love to go to our cabin on the weekends and spend our time enjoying water sports, bonfires, and fishing. I am excited to be a regional rep and help those early in the diagnosis find their most comfortable path.

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Jessica Tilghman

I am a proud mom of 2 kiddos, Rhae (10) and Will (4). We live in Kirkwood, Missouri. Rhae is diagnosed with SAS and we have embraced this new way of life. I have uncovered many resources (medical, financial, educational, community) that improve her and our quality of life. I have developed wonderful, genuine friendships along the way. I am delighted to be the regional rep for this area and hope to assist/support other SAS families to the best of my abilities! Please feel free to connect with me via social media, text, email, etc.

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Krista Copeland

My name is Krista Copeland. I live in Florence, SC with my husband, Devonne, and our son, Daxton. My husband works in IT and I work as a registered nurse for our local school district. We received Daxton’s diagnosis shortly after he turned two in August of 2020 after we noticed he wasn’t reaching some of his milestones. Dax is our only child, in addition to our Airedale Terrier, Fiona, who also happens to be Dax’s four legged best friend. Dax keeps us smiling and is obsessed with cars or anything involving water. Some things we enjoy doing together as a family are swimming, being outdoors, riding the golf cart, and watching movies. We’re looking forward to connecting with new families and learning from one another.

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Alice Wolfe

I am the mom of 4, 2 neuro-typical adult children and adult twins with SATB2. The twins are my youngest, and they have had this diagnosis for almost 10 years (wow!!). When we got our diagnosis, we were pretty much alone on this journey.. They had only documented one other case of SAS at that time (but I believe there were more with Glass Syndrome diagnosis). I was a stay-at-home mom for most of the twins’ young childhood, or worked in a place where I was able to be flexible with my schedule. We were a military family for most of the boys’ early years, moving every 2.5/3 years, having to start over every time we moved. We have now settled back “home” in East TN and the boys are nearing the end of their public education years.

The adult transition is upon us, and we are still learning! The boys don’t live together, but are together every weekend. The boy’s dad and I divorced when they were about 14, and the behavior issues were very prominent at that time, especially with Will. For that reason, Will lives with their dad and Paul lives with me and my husband. I love this community and love to share our story with others, much earlier on this road than we are, and encourage them along the journey.

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Mary Mecham

Mary Mecham, Founder and President of Advocates for Disability Inclusion in Literature, has 2 daughters with SATB2 Associated Syndrome and has been an active disability advocate for more than a decade. She is an author, speaker, IEP coach, and coordinated the first PROMPT training conference for speech language pathologists in Utah. She also coached Adaptive and ASL Gymnastics classes for athletes with a wide range of abilities for eight years.

Mary earned her Disability Advocate Certification through Utah State University’s pilot program in 2016, is a graduate from the Texas Partners in Policymaking and Rare Advocacy Learning programs, and regularly lobbies for disability rights and inclusion at local, state, and federal levels. She is the Director of Disability Book Week, a national event each April to increase disability representation in literary works and elevate voices of authors with disabilities.

Mary is a voracious reader, enjoys musical theatre, and can eat more chips and queso than any one human should be able to.

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Alexis Barnhart

My name is Alexis Barnhart and I am the regional representative for West Virginia. I have two kids— Oliver and Lucas. I am also a registered nurse and a homeschool mom. Lucas was diagnosed with SATB2 Associated Syndrome in March of 2021. It was difficult to get a diagnosis and I was shocked to learn he was the only known case in WV. As a result, I am passionate about raising awareness among providers in WV. I look forward to meeting other SATB2 families and building a strong SATB2 community in WV. Please feel free to reach out anytime.

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