My daughter was diagnosed in 2003, in the years that followed we tried to find a connection but we didn’t. Then in 2011 received email for a family weekend where I met some great people. Then in 2013 I joint the board. 22q Texas has become family a great support system and a community. They give you love and hope. Would be lost without this group of people.
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I found this group over 10 years ago and it changed our lives, to find other families going through the same things you are going through.to meet and talk to others and not feel judged or to have you child fell at ease such a blessing.
22q Texas, believes in the power of connection, the strength of community, and the unstoppable love that drives families forward...no matter the challenges. Our journey with 22q11.2 Deletion Syndrome has shown us that while the road may be complex, no one should walk it alone. And here in Texas, 22q Texas makes sure no one has to.
22q affects 1 in every 1,500 live births...bringing with it unique medical, developmental, and emotional needs. But more than that, it brings families together, ignites courage, and reveals a level of love and determination most people can only imagine.
That’s what 22q Texas is all about.
It is not just a support group...it's a movement. A family. A safe space for parents to breathe, for children to thrive, and for stories to be shared and celebrated. Whether it’s through their monthly virtual chats, statewide connections, or life-changing advocacy, they are there to lift each other up...one heart, one story, and one family at a time.
And when you meet one of the amazing 22q kiddos...like Jayce...you’ll understand exactly why this mission matters. Because behind every diagnosis is a child with dreams, a parent with hope, and a community ready to rise together.
So here’s to every family living the 22q journey. You are not alone. You are seen. You are loved. And you are part of something truly powerful. This is what 22q Texas has meant to me and my family...Together, we are 22q Texas Strong.
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Connecting with this group changed our journey when our son was diagnosed. I will forever be grateful for the support and community that exists within 22q Texas!!
Soon after my son's diagnosis, I attended a seminar at a speech pathology state convention and was introduced to the 22q Texas community. As we stepped into the confusing and overwhelming world of special needs, this organization welcomed us with acceptance and encouragement. Immediately, we had access to valuable connections, recommendations, and resources. We had support from other families. Sometimes, we need knowledge and resources more than community. Other times, we've simply needed shoulders to cry on from people who truly understand.
I'm so thankful to have found this organization, and I'm thankful for all the good I see coming from their work!
22q Texas has been by our side through all stages of life, from birth to teen years. Each new challenge, there is someone who has lived something similar to share their wisdom and experiences. As a newly single mom, there was an army of 22q moms ready to help me navigate this new chapter. I don't know how we could have done the past 13 years without our 22q Texas family.
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The diagnosis of 22q changed our lives, and while there has been a whole lot of hard, much of it has been good. 22q Texas is definitely one of those good things! We have faced some really big challenges this year, and we were as prepared as we could be because of what we learned from the friends who have blazed the trail before us. We are so excited for 22q Texas family camp this November! It really is the highlight of our year
This is one of my favorite nonprofits. They have faithfully served our family and many others like ours for all of my daughter's life.
Thus group has been a blessing in giving us a safe space to share our concerns and get opinions of others navigating the same journey.
I found this group 7 years ago when my son was newly diagnosed. The support and resources they provided changed the trajectory for my family. This board of volunteers dedicate so much of their time to ensure no families have to navigate this alone. From providing peer support to the whole family, sharing up to date research from medical professionals, and creating opportunities of inclusion - they are vital to ensuring families looking for information can find what they need.
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When my son was diagnosed with 22q11.2 deletion syndrome 22q Texas was the only resource and support that I could find. They were there to help me understand what it all meant, and create a safe space with new friends who understood the journey we were on. They absolutely changed our experience with his diagnosis. They are a blessing!
This non-profit is so helpful to families trying to navigate all that 22q Deletion involves. Answers to problems are shared, friends are made and victories celebrated. Wonderful organization!
So encouraging to find an organization that has a genuine heart for their work. 22q makes every effort to connect families by promoting and supporting special events, meetings, and more. Through 22q, my family has come to know other families who are on the same journey. We are so grateful. My favorite event has been 22q at the Zoo!
They have welcomed us and our family with open arms after our child was diagnosed with 22 q deletion syndrome earlier this year. They made us feel like family, and provided a ton of resources I was not aware existed. I am very thankful for this organization and the help they bring to families affected with this condition .
When we first got our Daughter’s diagnosis we felt so lost and alone. We attended an event geared toward children with 22q and were given resource after resource and more support than I could have ever imagined. My family has been so blessed by 22q Texas.
Great organization that is completely volunteer run. It provides much-needed support for individuals with 22q and their families.
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22q Texas is special resource led by dedicated volunteers. It provides support, education and fellowship for families who have a member with 22q deletion syndrome. In addition, it provides community awareness about the “most common yet unknown” genetic syndrome. This group truly is an extended family for me and I’m grateful for this ally in my child’s (and my) 22q journey.
Great group. Always there for each other. Offer helpful advise for all aspects of 22q. Like one big family.
When my son was first diagnosed, 22q Texas was there to help find medical specialists and offer invaluable support. We love 22q Texas!
This organization has been there for me and my family since my daughter was diagnosed with 22Q. They have helped to encourage us, educate us, and support us.
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I can not even put into words what this organization has meant to our family. They provide resources and tons of information to families who have a 22Q individual but more then that they provide support. This is the greatest group of people!
When my son was diagnosed with 22q I had no idea how to find information as the doctors didn’t have much to share. I scoured the internet searching and came upon this group on Facebook. I immediately felt part of a family and that my son was instantly loved. Through this group I have learned more about my sons condition that I’ve been able to educate doctors, this group is amazing!
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I absolutely love this community. We are instant family the moment you connect with someone. Anytime I need answers or help they have always been there. Camp 22q is absolutely amazing and all of my children look forward to going. Our life has somewhat changed and hope we can continue going as we can’t go the first weekend in November any longer. This retreat helped my son see that he is just one of the gang and I’ve never seen him so happy!
22Q Texas is a great resource for all things 22q!! I love the heart of the leaders to spread awareness and really advocate for those who have 22q, educate the public, as support the families and caregivers. Amazing group of people!
When my dd was born we knew something was different but we were all alone navigating a world that was so off. We did not finally get tested and diagnosed until she was 4 years old. Then we were really lost. What do we do, who do we ask, are we all alone?
We searched for resources and came upon 22 Texas.
This organization has supported us is so many ways. We look forward to our gatherings, support and friendships.
I so love my 22q Texas family!!! This is such a trying journey and having a group of people who understand the struggle, don't judge & just get it is priceless. This organization helps put families together, raise awareness and gives guidance. It is awesome!!!
22qTexas is one of a kind!!! The support this non profit offers families who are affected by 22q is invaluable to the families. They literally change lives for these families. I know they have changed ours. The board and volunteers work tirelessly to ensure families have the information to help each person be successful in life.
When you feel that no one gets it...no one understands the challenges that families with 22q face...Here comes 22q Texas! Rooting you on:) I am a mom of a 17 yro 22qutie who has had several surgeries, tackled the unknown of this diagnosis, etc. and have constantly looked to them over the years as my go-to. Every time I have communicated via phone, text, social event, or support group instant connection. They empowered and encouraged me and I've seen them do the same for many other families. 22q Texas reminds families that they are not alone. The linkage to community resources and support is stellar. I have shared them as a top 22q resource for newly diagnosed 22q children, parents, and their support systems. 22q Texas is truly a lifeline and passion driven❤ Happy to be in service to help drive the mission❤ #22qWarrior4Life
So very thankful for this group! From the moment we got my daughters diagnosis 6 years ago. I have leaned on this group for knowledge, resources, encouragement and sometimes just for a safe place to vent. This group took me from being scared of the unknown to let’s do this together, we are family! We are 22q strong ❤️
This group was a lifeline when we received our diagnosis. They were there for support and to provide resources. They changed our life!
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This non-profit truly made the difference for our family when our son was diagnosed with 22q11.2 deletion syndrome. I am continually impressed with how much they do for all of us, being a group of VOLUNTEER 22q moms! They are a life changing support group that really helped us find the positive energy to accept an enexpected and scary diagnosis.
I love this group and the amazing job job they do connecting folks who have children with special needs! It's a hard and lonely road for most of these parents - new and confusing. Friends don't understand and they "disappear," as they don't know how to relate. 22Q Texas saved my daughter when her second child was born with 22q. She felt so alone, until she became connected to several other moms via this organization. The group plans state-wide events, such as annual visits to zoo's in various cities and a 3-day camp, attended by 22q families from all over the state! They also provide a wealth of medical information, answer questions, and offer support all year long!
Covid has taken a toll, but the board and members of 22q continue reaching out to new members of this community, welcoming, connecting, providing information for new parents.
22q Texas has been amazing for our family. They have been a huge help and wonderful support system to our family.
22Q Texas has been and is a tremendous support network for parents and family members with 22Q or DiGeorge syndrome. I highly recommend this organization to anyone seeking more information.
These guys are wonderful! I no longer live in Texas, but any time I reach out, they are still so good to help! They do so much for the 22q community! Their support of individuals with 22q and the families with a loved one with 22q are unlike anything I've had. I love how they bring awareness and love through their work! Truly an amazing organization!
We have been involved with this group for the past 10 years. My daughter has 22q deletion syndrome and we didn’t know any other child or family that had 22q for the first 8 years of her life. We finally met this wonderful group when she was 8 years old and it was such a relief to not be alone. We attend 22q at the zoo and the wonderful 22q camp they have had the past ten years. My Saugus 18 now and I am currently a board member at large for 22q Texas. We will continue to support this group emotionally and financially as we can and help all the newly diagnosed families not ever feel alone.
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This is an awesome group that one I found them it made my family not feel alone. We attend the yearly zoo events and yearly retreats which benefits my daughter greatly. 22q is a very common genetic disorder that is under diagnosed. VCFS Texas spreads great awareness and is my second family!!
Review from Guidestar
22q Texas is a group of amazingly inspiring people, working hard to support individuals with 22q11.2 Chromosome differences and their families. They run an impactful, very well organized annual camp, during which families get to interact and share.
This group works hard even during times of crisis to help the families who deal with 22q even if it is to give advice. They even have outreach info for the families who have not joined the group before and share resources.
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This organization does so much for the 22q community. They provide as much help and advice as possible as well as plan get togethers for face to face support as well as online. They are more than a group thanks to them. This community is a family.
This charity helps families like mine connect with resources and their families. This can be an isolating diagnosis- without support. Thank you!
22Q Texas has made a life changing impact on our family. We now know we are not alone and we have gotten to experience the gift of being connected and supported.
My daughter is a 22qtie, and we’re ever so blessed to have found this nonprofit in TX. We love the members and the board. They’re all our new 22q family!
Great Non-Profit! All donations go directly to supporting kids diagnosed with 22Q. I couldn’t ask for any better support, networking, and information in finding treatment that works to help our kids! I highly recommend this group to anyone looking for a cause to support!
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Our family found this group 9 years ago. These are the best people. The yearly family retreat is such a blessing for every member of the family. The feeling of family lets you know you are not alone. Nothing but love.
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My daughter was DX in 2003, found this group 9 years ago, and I must say we are like family. The biggest event every year is our family retreat. You meet so many new families. There are speakers they also have family breakout sessions where you are both learning and teach either. It is amazing.
Our daughter was diagnosed with 22q deletion syndrome and we felt alone, discouraged and frustrated. We battled this on our own for a year before we found 22qTexas. It was here we found support, others who understand and direction of places to go to find the medical support we needed. It was our lifeline. We have enjoyed meeting with other families several times a year. We have a forum on line where we can ask questions and receive support from other families that have been there. It is here that our daughter can meet other kiddos with the same challenges she has had to face. It's a family. Our life's challenges are more manageable with the support we have found with 22qTexas.
Our son who is now 8 was first diagnosed with 22Q11.2 deletion at the age of 3. The day we took him in for genetic testing he had a full blown seizure on my shoulders and I knew something at that time wasn’t right. You see for years my wife suspected something was wrong with Sage but I was the dad who thought nothing was wrong with him it’s just part of him going through his childhood years. When he was diagnosed my wife immediately started doing research and I still thought nothing was wrong with him. Well one day my wife was on Facebook and saw a group about 22Q families and started reaching out to us. One of the first to donso was Suzi Beall Shaw who invited us to a retreat for 22Q families. I quite frankly didn’t want to go because it cost too much and still I thought Sage was normal. We went without my approval to this retreat. I will never forget the Saturday we were there walking down this ole dirt road to check on my daughter because we didn’t know any of these people. As I rounded a turn in the road I heard a lot of kids laughing and talking and when I saw those kids that’s when it hit me. All those kids looked just like Sage. Sage to us touches the lives of people he comes in contact with. He is a special gift from God and without this group we would’ve never made it. We are one huge 22Q family.
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As a father I always thought my son was going through the typical fit throwing that a (3 year old) at the time goes through. My wife always thought there was something different about him but I was the one in denial who said nothing is wrong with him. Well after genetic testing and a full blown seizure in my arms we found out that he had DiGeorge syndrome or 22Q11.2deletion. We had no idea what that was or what it meant for him and so my wife found the 22Q Texas group on facebook. They were having a retreat up north of McKinney for all the families whose kids had the same syndrome. I did not want to go because my kid was normal and because we did not have the extra money to go. Well we went and all it took for me was one long walk down a dirt trail to see all these kids who looked just like our son and at that time it hit me like a ton of bricks. I knew at that time what he had and has gone through he cannot help. This group means the world to me. We have all laughed and cried together. It seems as though we continue to learn about this syndrome more and more everyday and the 22Q group is necessary in information sharing as well as we all consider ourselves one big family.
We love this organization. They are completely volunteer run and provide support for people and families of people with 22q. We love the camp they put on every year.
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This group is amazing at providing information and support for families with a child diagnosed with 22q. The annual retreat brings families together for education and fun!
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This group has been a lifeline for our family since my granddaughter was diagnosed. The information, support and resources we have received have been essential in helping our family navigate the many hills and valleys of having a 22q child. Giving us opportunities to meet each other at retreats and 22q at the zoo is amazing!
This is by far the best organization for children with 22q. The board members go above and beyond to help you any way they can.
22q Texas has been a life saver for my family. We were lost once our daughter was diagnosed with 22q. We felt all alone and lost. It was not until we found the organization that we began to gain knowledge, support and most of all love. We have know gained another family. We value this group so much and hope that we can can give another family the same.
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Our daughter Abi was diagnosed at age 4 after years of doctors not knowing that all her issues were connected. We were given information to 22texas and our lives have not been the same. This group is not only for information this is a connection to a family. One that understands what we struggle with. A family that supports each other and makes you realize you are not alone. We love being part of this group! We look forward to our retreat because it's the one time a year you don't worry about anything! Just being loved and supported by your family!!!
Just when we felt so lost so many unanswered questions we found this organization! We immediately were welcomed and began networking to find the proper and knowledgeable care for our daughter. This organization is lead by a great group of people whom dedicate their time to help families like mine! It’s been 3 years since my family has been a part of this group and we continue to grow closer.
The experiences that my family shares with this group are priceless. No where else is my 22q kiddo deemed normal. No where else am I surrounded by people who understand the path and trials of having a special needs kiddo. No where else can we feel so at home. We will keep doing what we are doing thanks to the support we receive!!
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I was so overwhelmed and looking for help in any way when this group found me about 6 years ago. My daughter was diagnosed at 3 wks but she had never met another person dealing with the same diagnosis until the first zoo event. We have found so many new relationships through this organization & I am beyond proud to serve on the board now. It is truly amazing to see the lives that have changed thanks to the work done by this group. It's very exciting to see!! Looking forward to see what the future holds.
22q Texas supports families in Texas and beyond affected by the second most common genetic disorder - 22q11.2 deletion syndrome (also known as DiGeorge or Velocardiofacial syndrome). It provides information, resources and support so that families can achieve the best possible outcomes! 22q Texas has let our child know that he is loved and supported beyond his own family and he and we are not alone.
I found this organization by chance and have been blessed ever since. The leaders are always available to answer any questions and always provide news and resources as they learn about them. Thank you 22QTexas
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I was going through a divorce just months after my infant was officially diagnosed with two genetic disorders, one being 22Q. My world was in a tailspin. I spent months researching my little one's diagnoses. I came across international zoo day and began to cry because I had missed it by a couple of days. I felt so alone. I had been off social media for almost a year when one day I just searched for 22q. I found VCFS Texas/22Q Texas. I was immediately welcomed with warmth and encouragement. I missed the following international zoo day due to inclement weather. I was disappointed. I finally had the opportunity to meet members for this support group at the annual 22Q camp. We loved it! I get emotional now just thinking about the love and support I felt. This organization is wonderful. The organizers are personable, passionate, knowledgeable, and so supportive. I am now a single mom but the support I get from this organization is priceless.
~More than appreciative Mama
Review from Guidestar
This group has been absolutely incredible. The support we have received continuously blows us away.
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22q Texas has saved me. The group of men and women behind this group will never know the depths of my love for them. We are about 6 months into the journey with 22q as my daughter was diagnosed at the beginning of the year. I have made many friendships, learned from veteran families/ shared stories, tears & heartache with so many of these beautiful people. I can honestly say that life will never/ would have never been the same without 22q Texas.
Thank you for everything you do. ❤️
Review from Guidestar
This is a really great group that ya actually grown outside of Texas. We have found that those families had no support in their areas.
At the scariest time in my life when all of a sudden I had no idea what my sons future would look like, this nonprofit group gave me support that I desperately needed. I had people who knew what I was going through, and could answer questions no one else could. They also gave me a purpose of good from one of the worst things a parent could go through. I realized if I was involved in this great community I could have an avenue to help others and raise awareness for a genetic syndrome that desperately needs to gain attention so other children will not go through their lives undiagnosed.
This group is amazing my daughter is 10 and she just met this group at 22q at the zoo she has since started advocating for other people with 22q.
When your child receives a the diagnosis of a life-long, complex genetic disorder you've never heard of , it's impossible to not be overwhelmed. When your pediatrician has never heard of that disorder either, it's more than a little frightening and frustrating. You feel lost. When you find an online support group made up of families who have the same diagnosis and understand everything you are feeling, you realize you are not alone. When you have the opportunity to meet these families in person, talk, hug and play together, you know you have a new family! That is what 22Q Texas is. Not just a community. A FAMILY. Families living with 22Q who lean on each other, cheer for each other & love on each other
After an emergency c-section, our beautiful son was born. We learned on the second day of his life that he had congenital heart defects and at 2 months old, he had open heart surgery. Because the cardiologist ordered genetic testing in the operating room (thankfully), at 4 months old, he was diagnosed with DiGeorge Syndrome. When I looked that up on the internet, I found published medical articles about schizophrenia and immune system problems. I only figured out years later that the syndrome was also called Velocardiofacial syndrome or 22q11.2 deletion syndrome. With new terms, I found more resources and people who were going through the same journey - of unawareness in the medical and educational communities. I helped found this group of families dedicated to improving the lives of all people affected by 22q11.2 in Texas and beyond. We will connect you with resources, share our stories and support you in your own journeys. We are all in this together and we will make a difference!
I have seen hundreds of people benefit from the services and events coordinated by 22q Texas/VCFS. This organization is run by and for the 22q community. A most excellent group, making the 22q journey one that needn't be traveled alone here in Texas! ⭐️⭐️⭐️⭐️⭐️