Family Support Network - SATB2 Gene Foundation

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Medical, informational, and family resources.

Family Support NetworkBrett Garwood2024-01-17T10:04:40-05:00

FAMILY SUPPORT NETWORK PROGRAM

The Family Support Network is a peer led program to empower families affected by SATB2-Associated Syndrome to navigate and support their journey. Fully launching in 2024 our goal is to connect families together within a state or region to help navigate area resources, share connections to those close by and host virtual and in person meet ups.

What is a Family Support Representative?

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. Please sure to also complete our Contact Registry and get counted! This ensures we have your most current address and email so you can stay informed of what’s happening!

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.

*Please note that we are currently piloting this program in North America. If you are interested in expansion, please contact us and we will add you to our waitlist. You can also check to see if there is a local SAS charity in your country as well by checking out our International Partners listing.

Upcoming Events

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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Jacqueline Truong

Jacqueline’s bio is coming soon!

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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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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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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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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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Jenna Garwood

Jenna graduated from Cairn University with her Bachelor of Social Work degree. She has always been passionate about doing work that helps others to live a better life. Until recently, her passion had been to work with individuals with eating disorders, those who had come out of human trafficking situations and teen pregnancy. When her oldest daughter was diagnosed with SATB2-Asssociated Syndrome in 2019 her passions switched to helping families navigate the ins and outs of raising a child with special needs.

One of the things that Jenna quickly realized after he daughter’s diagnosis was that there was very little information readily available for families about what programs and services were available through their state for their children. Jenna wants to do what she can to help families learn about their states programs and services and ensure that every child has equitable access to those programs and services.

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