22q Texas, Inc. is a volunteer-run organization building community and providing support and activities for families affected by 22q11 chromosome differences (i.e. 22q11.2 deletion/VCFS/Velocardiofacial Syndrome/Di George syndrome, 22q11.2 duplication, triplication & distal deletion). While all of these disorders can cause complicated health, developmental, intellectual and phycological challenges, the most researched of these is 22q11.2 deletion syndrome.
22q11.2 deletion syndrome and 22q11.2 duplication syndrome are genetic condition in which a small part of the 22nd chromosome is either missing or duplicated at conception. It affects every cell of the body, with over 190 know associated features. No two people are affected in the same way, making diagnosis very difficult. Estimated to be present in 1 in 1000-2000 people, it is second only to Down Syndrome in occurrence. In spite of being very common, many medical professionals are unfamiliar with it.
Common symptoms include: congenital heart defects, speech/language delay, developmental delay, palate differences, suppressed immune function, endocrine problems, emotional, behavioral and psychiatric issues including ADHD, autism & anxiety, learning differences/delays. While 22q11.2 deletion, 22q11.2 duplication and 22q11 distal deletion are similar conditions and there is much overlap, each syndrome has unique traits, however we bond together as one 22q family. Because of these closely-related conditions, we choose to use the simplified and inclusive nomenclature, "22q".
Your donation today will help fund our annual 22q Texas Family Camp and Retreat, which will be hosted November 10-12, 2023. This is a unique family experience & the only one of its kind in the United States! 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 200 guests and our expenses to host the event are expected to exceed $38,000. However, families attend at little or no cost, with all meals, lodging & activities provided. Thank you for helping make this wonderful retreat a reality!
Our mission at 22q Texas, Inc. is to provide support and resources to individuals & families living with 22q11 chromosome differences (i.e. 22q11.2 deletion/VCFS/Di George syndrome, 22q11.2 duplication, triplication & distal deletion), as well as professionals and the community in Texas.
22q Texas, Inc. achieves its mission by:
Increasing Public awareness and understanding about 22q.
Creating a forum for the exchange of information, ideas and experiences related to 22q, facilitated through support groups, social networking and social events for the whole family.
Improving the provision of services and supports to people with 22q through governmental agencies , the medical and therapeutic community, education institutions and non-profit organizations.
Providing educational resources and support to parents and educators to ensure quality medical and therapeutic treatment for individuals with 22q in accordance with up-to-date scientific research.
Providing educational resources and support to parents and educators to ensure quality education which will prepare individuals with 22q for further education, employment and independent living.
Promoting the development of programs that enrich the lives for individuals with 22q.
Volunteers are needed for our upcoming family retreat weekend at Morgan's Wonderland Camp in San Antonio, TX. We need volunteers to guide kids and adults through scheduled activities. We need volunteer "buddies" to aide some of our more profoundly affected kids and adults through activities to enable their caregivers to spend time learning and connecting with other caregivers. We need volunteer photographers and videographers to record all informational sessions and to take candid photos of kids and families throughout the weekend. We need experienced Spanish language interpreters to translate the informational sessions and facilitate conversations between parents. Please contact us at retreat@22qtexas.org if any of these opportunities interest you!
At 22q Texas, Inc., we are committed to equity, inclusion, and diversity in all aspects of our mission and operations. We recognize that every individual, regardless of their 22q11 chromosome difference or any other characteristic, deserves respect, understanding, and equal access to opportunities and resources. Our organization is dedicated to fostering an environment where everyone feels valued, heard, and empowered.
We believe in the inherent worth of every person and understand that the journey of living with 22q11 chromosome differences is unique for each individual and family. We are committed to dismantling barriers, both visible and invisible, that may impede the full participation and engagement of individuals with 22q11 chromosome differences within our community.
To uphold these principles, we strive to:
1. **Provide Inclusive Support:** We offer support, resources, and a safe space that embraces the diverse experiences, needs, and perspectives of individuals and families living with 22q11 chromosome differences. Our support groups, social events, and educational programs are designed to be inclusive and welcoming to all.
2. **Promote Awareness and Understanding:** We are dedicated to increasing public awareness and understanding about 22q11 chromosome differences. By fostering awareness, we aim to reduce stigma and foster a more inclusive society.
3. **Advocate for Access:** We work to improve the provision of services and supports for people with 22q11 chromosome differences. We advocate for equitable access to quality medical care, education, employment opportunities, and community resources, regardless of individual differences.
4. **Ensure Quality Education and Treatment:** We provide educational resources and support to parents, educators, medical professionals and others to ensure that individuals with 22q11 chromosome differences receive appropriate and up-to-date medical and therapeutic treatment, as well as a quality education that prepares them for their long-term health and wellness.
5. **Foster Enrichment and Empowerment:** We actively promote the development of programs that enrich the lives of individuals with 22q11 chromosome differences. By offering opportunities for skill building, personal growth, and social engagement, we empower individuals to achieve their full potential.
In alignment with our commitment to equality, diversity, and inclusion, we reject any form of discrimination based on race, ethnicity, gender, sexual orientation, religion, or any other characteristic. We are united in our pursuit of creating a supportive and accepting community where all members are embraced and celebrated.
Organization name
22q Texas, Inc.
Causes
Human Rights, Civil Rights & Advocacy, Intellectual, Developmental, and Physical Disabilities, Youth & Children
Operating Budget
Less than $100,000
Counties Served
Wise, Tarrant, Somervell, Rockwall, Parker, Palo Pinto, Navarro, Montague, Kaufman, Johnson, Hunt, Hood, Grayson, Fannin, Erath, Ellis, Denton, Dallas, Cooke, Collin
Address
7710 El Pastel Dr