The International 22q11.2 Foundation is a nonprofit organization dedicated to supporting the needs of families and individuals affected by chromosome 22q11.2 differences by promoting awareness, state-of-the-art clinical care, cutting edge research endeavors, and solidarity with related associations around the globe.
Over the last 18 years, the International 22q11.2 Foundation has been successful in helping thousands of families by making valuable connections with top medical experts and support groups, creating awareness, supporting research, and delivering cutting edge information related to 22q. As we approach the next ten years, we want to expand our footprint and make 22q a household name. If you would like to support our cause, please email us at firstname.lastname@example.org or visit our donation page.
We envision a world where individuals with 22q live longer, healthier, and more independent lives; where healthcare providers and the lay public are familiar with 22q; and where continued medical research improves treatment options and the potential for cures.
In 2003, a small group of parents and a local professional concerned about individuals affected by the chromosome 22q11.2 differences decided they wanted to make a difference. While sitting around a kitchen table in suburban Philadelphia, the group brainstormed about how they might help those afflicted with 22q. Shortly thereafter the group created
The International 22q11.2 Deletion Syndrome Foundation, Inc. with these goals: (1) improve detection; (2) care for families; (3) help drive awareness among clinicians, teachers and the general public; and (4) support research that would improve outcomes for affected individuals and their families.
Many of the founding families shared a common bond: isolation and uncertainty. In 2003, a 22q diagnosis was not well understood and many parents struggled for information about their child’s treatment, care and long-term outcomes. There was (and is) considerable confusion surrounding the numerous clinical names used to describe the same condition. Since the creation of the Foundation, the name and awareness of “22q11.2 differences” has gained momentum.
In 2012 our new name was launched: The International 22q11.2 Foundation, Inc. Our team decided to drop the words “Deletion Syndrome” from the name as we expand our services to include all individuals and families affected by abnormalities of chromosome 22q11.2. This includes those with smaller deletions, those with changes in genes within the region such as TBX1, and those with the 22q11.2 duplication syndrome.