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2017 Top-Rated Nonprofit

22Q Texas/VCFS TEXAS INC

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Camps, Civil Rights, Disabilities, Disabled Persons Rights, Health, Sports

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 Chromosome differences (22q11.2 Deletion Syndrome, VCFS, Di George Syndrome, 22q11.2 duplication, 22q11.2 distal deletion), their families, professionals, and the community in Texas.

Results: The annual 22Q Texas Family Camp 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

26 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

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

Previous Stories
2

Client Served

Rating: 5

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

Tara N.1

Client Served

Rating: 5

My daughter and I really enjoy the camp this group puts on every year. They have also been very helpful for us finding local resources that have knowledge of the syndrome.

1 Candace14

Client Served

Rating: 5

This is a group run by individuals who have a clear cut understanding about what life with 22q is about because they are living that life. This group has helped so many people with different issues as well as help the families connect with medical professionals who understand the needs of the community they are serving. The help they provide is not just for the parents and adults but also the young kids and teens who are either the siblings, cousin, or the the person with the syndrome. They even reach out to members who are in the area of an incident (whether it is one of violence or natural disaster such as Hurricane Harvey or The West Explosion). They work to not only help the families but spread the word about the syndrome so others can be educated and find other families that need the support that this group provides.

Previous Stories
2

General Member of the Public

Rating: 5

This group work hard for not only the individuals with 22q but also their families.

1 Jennifer B.5

Client Served

Rating: 5

Such a special network of supportive families. We cry together, lift each other up and learn from each other. Invaluable!

1 Claudia34

Board Member

Rating: 5

This group has been absolutely incredible. The support we have received continuously blows us away.

Previous Stories
2

Client Served

Rating: 5

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

1

Client Served

Rating: 5

This group has helped my wife and step daughter find support and to help me be more informed

1

General Member of the Public

Rating: 5

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.

1

Client Served

Rating: 5

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.

1 Shannon C.1

General Member of the Public

Rating: 5

Since my son was diagnosed 3 years ago at the age of 7 I have turned to this group so much for answers. The group is so supportive and quickly call to action when help is needed. This is a chromosome abnormality that needs more recognition in the community so these kids/adults are helped with daily needs.

1

Client Served

Rating: 5

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.

2 Samantha R.1

Client Served

Rating: 5

This group is very supportive of anyone with questions, needing advice, or just someone to listen and commisurate with. I’ve learned a lot and know my family is not alone in this. Very active throughout the state.

3 Suzi Beall S.

Board Member

Rating: 5

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

3

Board Member

Rating: 5

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!

4 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! ⭐️⭐️⭐️⭐️⭐️

3

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!

3 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!

3 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!

3 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.

2

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.

2 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.