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Nonprofit Overview

Causes: Health, Specifically Named Diseases

Mission: 22Q Texas/VCFS Texas Inc. is run by volunteers whose families are affected by 22Q. Our mission at 22Q Texas/VCFS Texas, Inc. is to provide support and resources to individuals with 22q11.2 Deletion Syndrome (a.k.a. VeloCardioFacial Syndrome, VCFS, Di George Syndrome), 22q11.2 duplication & distal deletion, their families, professionals, and the community in Texas.

Results: The annual 22Q Texas Family Retreat is by far our most popular, impactful program. It is truly a unique family experience. When one person in a family faces a challenge it affects the whole family. Our retreat provides a safe environment for those with 22Q and the families who love them. The weekend is often life-changing. For many it is the 1st time to meet another family affected by 22Q and the 1st time they realize they are not alone. Kids participate in fun, challenging activities, building independence & confidence by doing things they thought were impossible. Parents and siblings are empowered, educated and connected with a strong support system. Families bond together and leave with renewed strength and hope. The retreat regularly draws more than 100 attendees. Expenses for the retreat are expected to exceed $15,000. However, families attend at little or no cost, with all meals, lodging & activities provided. Your support will help make this wonderful retreat a reality!

Target demographics: families living with 22q11 chromosome syndromes

Direct beneficiaries per year: hundreds of families.

Geographic areas served: the Great State of Texas and beyond

Programs: support groups, education & resources for families, educators and professionals, local gatherings across the state and an annual family retreat. Our online support group can be joined here https://www.facebook.com/groups/vcfstexas/

Community Stories

13 Stories from Volunteers, Donors & Supporters

2 Michelle380

Professional with expertise in this field

Rating: 5

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! ⭐️⭐️⭐️⭐️⭐️

1

Former staff

Rating: 5

I am one of the founders of 22Q Texas! Our daughter was born with and diagnosed at 5 months old. We needed support and families that understood what we were going through! This nonprofit does all of that for our family. We have contact info so you can call a parent looking for help and support!

1 Erin115

Client Served

Rating: 5

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!

1 Katie156

Client Served

Rating: 5

22Q Texas is an amazing organization that not only provides support for families they also are seeking to provide awerness to the community. Their efforts are helping our kids have a better future! My daughter knows she is not alone and now knows so many other families with 22Q and I love the way this group has come along side us to help encourage and educates us as a family. I also can not say enough good things about their 22Q retreat it's a great time to connect with other families!

1 Susan492

Client Served

Rating: 5

When I found out my son had 22Q, this rare syndrome I had never heard of, I was terrified and devastated. This nonprofit was a god send when I found it. There was resources, information, and support. I got excited about the community we had found and started to have a better idea of what this was and how to handle it all.

1

General Member of the Public

Rating: 5

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.

1 Heather267

Board Member

Rating: 5

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.

1 Rotceh P.

Volunteer

Rating: 5

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!!!

1 Cheryl171

Board Member

Rating: 5

Our daughter was diagnosed at 2 yrs with 22q. I think my first thought was now I know, second was where to start and what to do. We found this group 7 years ago, and it has been life changing and life saving. I have found no matters what you are going through with your child, someone in the group is either going through it or been through. I can't imagining having these people and group in our life.

Review from Guidestar

1

Client Served

Rating: 5

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