22q primary page image

2021

  • Foundation brought back quarterly newsletters to provide important information for 22q deletion and duplication.
  • We launched a logo refresh:
    • The heart symbolizes the compassion and love we bring to our mission every single day;
    • The “q chromosome” highlights our unparalleled relationship with world experts who tirelessly volunteer on our Executive and Medical Advisory Boards.
  • Foundation launched a NEW user friendly website for families and professionals to access the latest research, information, and resources.
  • The 11th Annual 22q at the Zoo Worldwide Awareness Day and 22q and ZooM was held on Sunday May 16, 2021. This fabulous event is aimed at raising awareness of syndromes related to chromosome 22q11.2. It welcomes children, adults, and families alike for a mixture of professional presentations, entertainment, games. While many locations were fortunate enough to gather in person due to confidence in a low risk of COVID-19 in their local communities. After a year of extraordinarily difficult times, with your help, once again we came together as a family – supporting one another, learning new things, making new friends, enjoying one another’s company, just being silly with our children, and looking forward to better times ahead.
  • Our Medical Advisory Board welcomed new members Oksana Jackson, Madeline Chadehumbe, Cindy Solot, Marta Unolt, Maria Mascarenhas, and Michele Lambert.
  • February’s No Show Valentine’s Ball was a great success. Thank you to all our families and professionals for your continued support.

2020

  • Devin Booker, NBA Community Assist Winner and Phoenix Suns Standout, teamed up with the International 22q11.2 Foundation to host families of children with 22q at the Milwaukee Bucks vs Phoenix Suns game on Sunday, March 8, 2020 at the Suns’ Talking Stick Resort Arena. Devin provided tickets to the families in a private suite to enjoy lunch and the Suns game. He also met with the families afterwards.
  • We created a COVID-19 Informational Series for individuals with 22q differences.
  • The 10th Anniversary 22q at the Zoo Worldwide Awareness Day was transformed into 22q and ZooM due to the COVID-19 pandemic. Our virtual feed started at 7 PM on Saturday May 16 Eastern time (11 AM on Sunday May 17 in New Zealand) and ended at 7 PM on Sunday May 17 Eastern Time (1 pm in Hawaii). Family and friends joined virtually from anywhere around the globe during that 24-hour period!
  • We produced our 16th annual awareness-raising Calendar featuring our beautiful faces of sunshine.
  • We kicked off the November Awareness Campaign, the largest of the year to raise awareness and funds. Our social media campaign captured images of all the beautiful faces of sunshine along with daily facts and links.

2019

  • The 9th Annual 22q at the Zoo Worldwide Awareness Day took place on Sunday, May 17, 2019 at zoos, parks and playgrounds around the world.
  • The Phoenix Suns’ Guard Devin Booker was named thewinner of the NBA’s “Community Assist Award presented by Kaiser Permanente” in November 2019! Devin has chosen the International 22q11.2 Foundation as the recipient of the award’s grant. The $10,000 from the NBA and Kaiser Permanente, as well as a feature on the NBA site, kicked off his charitable outreach to help raise awareness of 22q11.2 differences.
  • We produced our 15th annual awareness-raising Calendar featuring our beautiful faces of sunshine.
  • The Foundation elected Marc Weinberg as Chair.
  • The Board welcomed three new board members, Debbie DeLoach, Elizabeth Vinhal and Arora Manish.

2018

  • We celebrated 15 Years of family support – Over the last fifteen years, the International 22q11.2 Foundation has been successful in helping thousands of families by providing vital resources, making valuable connections with top experts, creating awareness days, supporting research, engaging with other support groups for advocacy, and delivering the most cutting edge information related to 22q. As we approach the next fifteen years, we want to expand our footprint and make 22q a household name.
  • We created affiliate board member positions for the leads of our international collaborating organizations as affiliate board members. We welcomed Julie Wootton from Max Appeal (United Kingdom), Maria Kamper from 22q Foundation Australia & New Zealand (Australia), Anne Lawlor from 22q Ireland (Ireland), and Giulietta Angelelli Cafiero from Aidel22 (Italy).
  • Our Foundation was the lead sponsor for the Family Conference at the 11th Biennial International 22q11.2 Conference in Whistler, BC, Canada.
    We introduced our new tagline… “Detect – Know – Grow!” Having spoken with families and friends, we were proud to unveil the tagline which more accurately aligns with our organization’s focus to support families and share information about 22q11.2 differences.
  • The 8th Annual 22q at the Zoo Worldwide Awareness Day took place on Sunday, May 20, 2018.
  • We produced the 14th annual awareness-raising Calendar featuring our beautiful faces of sunshine.

2017

  • The 7th Annual 22q at the Zoo Worldwide Awareness Day took place on Sunday, May 15, 2017, spanning 115 cities in the US and 24 cities internationally on 6 different continents.
  • We produced our 13th annual awareness-raising Calendar featuring our beautiful faces sunshine.
  • With support from Natera, we designed an infographic for our advocacy campaign.
  • We welcomed new members Nicole Mark and Mindy Taylor onto the board.
  • The Ugly Sweater Run took place at 10 locations around the US as families, friends and professionals raised awareness during the holiday season.
  • We launched the 2.2 for 22q event. Participants ran, swam, biked, walked, skiied, hiked, and skated to raise funds and awareness for 22q.

2016

  • We created and produced an educational and inspirational video for newly diagnosed 22q families. This video has been shared through social media and has been watched by thousands of expectant parents throughout the world. Click here to watch.
  • Our Foundation was the lead sponsor for the Family Conference at the 10th Biennial International 22q11.2 Conference in Sirmione, Italy. Families and medical professionals from around the globe attended the conference to find out about the most up-to-date research and information. A number of International 22q11.2 Foundation Medical Advisory Board Members were among the highlighted speakers at the conference.
  • Our 6th Annual 22q at the Zoo Worldwide Awareness Day took place on Sunday, May 15, 2016, spanning 115 cities in the US and 24 cities internationally on 6 different continents. An estimated 10,000 participants attended.
  • Our 12th annual awareness-raising Calendar featuring our faces of sunshine
    Rock ‘N’ Roll and family fun series took place in Philadelphia, Pennsylvania and Denver, Colorado, USA.

2015

  • Important progress was made as many members of the Medical Advisory Board were involved in the publication of the Practical guidelines for managing adults with 22q11.2 deletion syndrome.
  • The 5th Annual 22q at the Zoo Worldwide Awareness Day took place on Sunday, May 17, 2015 spanning 115 cities in the US and 24 cities internationally on 6 different continents.
  • Dublin 22K for 22q Rock and Roll Half Marathon: An international group of runners, walkers, and volunteers raised awareness for 22q11.2 deletion and duplication syndromes by participating in the Dublin Rock-n-Roll Half Marathon (22k) or Fun Run (3k). This collaborative venture was supported by 22q Ireland, the 22q11.2 Society, and Max Appeal.
  • The Ugly Sweater Run: During the holiday season, we raised awareness for 22q11.2 deletion and duplication syndromes with a family friendly 5K fun run/walk at 10 locations across the US.
  • We launched a new website. The website had a new design and layout that helps families navigate through the site faster and easier for the most up to date resources and information.
  • Family Support Network: We published an extensive list of family support organizations around the world.
  • 2.2 mile Run/Walk for 22q: A 2.2-mile run/walk for 22q was held at the NSGC (National Society for Genetic Counselors) Conference in Pittsburgh, PA.
  • An extensive review of the 22q11.2 Deletion Syndrome was featured in Nature Reviews Disease Primers, a leading scientific journal, on November 19, 2015. This publication was exciting because it brought focus and education about 22q11.2DS to the scientific community. In addition, the article supported many of International 22q11.2 Foundation initiatives such as “Same Name Campaign”, early diagnosis (including newborn screening), and the importance of early intervention.
  • Team 22k for 22q Dublin: An amazing international group of runners, walkers, and volunteers raised awareness for 22q11.2 deletion and duplication syndromes by participating in the Dublin Rock-n-Roll Half Marathon (22k) or Fun Run (3k) on August 2, 2015 on the beautiful Emerald Isle!
  • We produced our 11th annual awareness-raising Calendar featuring our faces sunshine.

2014

  • The 9th Biennial International 22q11.2 Deletion Syndrome Meeting took place in Palma de Mallorca, Balearic Islands, Spain from Thursday June 19th to Sunday June 22nd. Our Foundation jointly sponsored The International Family Program, which included scientific sessions and short courses given by international experts, as well as workshops addressing the needs of children, teenagers and adults with 22q11.2 syndromes and their families.
  • Our Get Involved webpage was created to guide families and professionals to help the Foundation reach its goals. Our 22q Programming includes providing support and resources for families, bringing newborn screening to a reality, as well as raising awareness, especially through 22q at the Zoo, the largest awareness day for 22q around the world.
  • The 4th Annual 22q at the Zoo Worldwide Awareness Day took place on Sunday, May 18, spanning 61 cities in the US and 37 cities internationally on 6 different continents. An estimated 10,000 participants attended.
  • We produce our 10th annual awareness-raising Calendar featuring our faces of sunshine.

2013

  • In April 2013, Julie and Paul Wootton from Max Appeal arranged a meeting at the British House of Commons. Invited speakers, including Board Member Donna McDonald-McGinn, MS, LCGC, gave Members of Parliament an overview of 22q. It was an impressive and inspiring event hosted by Max Appeal.
  • The 3rd Annual 22q at the Zoo Worldwide Awareness Day took place on Sunday, May 19, spanning 82 cities on 6 different continents. An estimated 10,000 participants attended.
  • We produced our 9th annual awareness-raising Calendar featuring our faces of sunshine.

2012

  • Our new name was launched – We are now known as The International 22q11.2 Foundation, Inc. Why the change? The words “Deletion Syndrome” were dropped from the name as we expanded 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.
  • The 8th Biennial International 22q11.2DS Conference was held July 6-10, 2012 at Disney’s Yacht and Beach Club Resorts in Lake Buena Vista, Florida, USA. Our Foundation was proud to be the lead sponsor and convening organization for the family portion of this conference.
  • The 2012 No Show Valentine’s Ball was a great success, thanks to friends, family members and donors who had a great time “not showing up.”
  • The Tell 22 About 22q Campaign reached over $10,000. Students from Maryland through New Jersey raised funds by way of Bar and Bat Mitzvah service projects while spreading awareness about 22q.
  • In January, groups from throughout the United States, Canada, and the United Kingdom had the opportunity to present before the US Secretary of Health’s Committee on Heritable Disorders and Newborn Screening to rally support for newborn screening for 22q11.2. These representatives came from The Children’s Hospital of Philadelphia, The University of Toronto, The International 22q Foundation, Max Appeal, Children’s Hospital of Wisconsin, and The Ryan and Jenny Dempster Foundation.
  • The Foundation welcomed Anne Bassett as Chair of Medical Advisory Board.
  • The 2nd Annual 22q at the Zoo Worldwide Awareness Day took place on Sunday, April 22, spanning more than 12 countries on four continents, including 65 cities.
  • We produced our 8th annual awareness-raising Calendar featuring our faces of sunshine
  • The Foundation elected Sheila Kambin as Chair.

2011

  • Important progress was made as many members of the Medical Advisory Board were involved in the publication of the Practical guidelines for managing patients with 22q11.2 deletion syndrome.
  • The 1st 22q at the Zoo Worldwide Awareness Day was held in May to spread 22q awareness while bringing together families and friends at zoos all around the globe.
  • We received a grant from the Robert Wood Johnson Foundation to improve our website and create additional web-based resources for families and medical practitioners.
  • A 22q booth was staffed in March 2011 at The Federation for Children with Special Needs Conference in New England. Lisa Jennings and her troop of volunteers helped raise awareness about the syndrome by handing out brochures and binders.
  • We provided parent grants to support the Elwyn Genetics 22q Conference in Indianapolis, Indiana.
  • The Board welcomed new board members, Sheila Kambin and Fred Weiner.
  • Our Foundation contributed significant financial support to the Dragonfly Forest Camp to help provide a wonderful week of overnight summer camp dedicated exclusively to campers with 22q.
  • 22q Family Activity Week provided a fun-filled week of activities for parents and siblings while their child and sibling campers enjoyed the Dragonfly Forest Camp.
  • We kicked off the Tell 22 About the 22q Campaign. The campaign was designed to raise global awareness about 22q as well as to develop resources for Foundation initiatives and programs.
  • The Ryan and Jenny Dempster Family Foundation awarded us a grant to continue our parent binder program.
  • We produced our 7th annual awareness-raising Calendar featuring our faces of sunshine

2010

  • The Foundation awarded a grant of $5,000 to support the Elwyn Conference held in February in Gainesville, Florida. The conference targeted behavior and learning in children with 22q11.2 deletion syndrome.
  • We launched our first Facebook Cause page. Postings exploded and proliferated around the globe.
  • We continued to provide information, resource ideas, and moral support for countless parents and medical professionals who reached out to us by phone or e-mail as a result of finding us on the web.
  • More than 800 complimentary parent binders were delivered to grateful individuals and to hospitals where they were distributed to 22q families. The binders helped families organize medical records, contact information and notes and included the educational booklet – Birth to Five.
  • Our Foundation contributed significant financial support to the Dragonfly Forest Camp for a wonderful week of overnight summer camp dedicated exclusively to campers with 22q.
  • The 7th Biennial International 22q11.2 Deletion Syndrome Conference was held in Coventry, England and received significant financial support from our Foundation. Several hundred parents and professionals from all over the world (including multiple members of our Board) came together to hear about new developments, share research, network, bond, and plan.
  • We produced our 6th annual awareness-raising Calendar featuring our faces sunshine
  • In an effort to clear up the confusion over multiple names by which the deletion was known, we launched the Same Name Campaign.
  • The Foundation elected Carol Cavana as Chair.

2009

  • Our Foundation awarded a grant of $5000 to support the Conference to Highlight Learning and Behavior in 22q (Elwyn & U.C. Davis M.I.N.D. Institute) held in March in Sacramento, California, USA.
  • The Annual Benefit for Alexa Nagle Golf Tournament in Springfield, Pennsylvania, USA raised funds to support 22q research.
  • The 22q/DiGeorge Walkathon in Chicago, Illinois, USA raised awareness of 22q with promotional items and branded shirts worn by the walkers.
  • The Night in Venice Fundraiser raised $15,000 in Philadelphia, Pennsylvania, USA in September.
  • The 22q community was pleased to see the October launch of the Foundation’s 22q Facebook Group.
  • The American Academy of Pediatrics met in Washington, DC, USA in October and featured a 22q exhibit. Our Foundation supported the gathering with a grant of $10,000. We placed a half-page advertisement in the American Academy of Pediatrics program book, reaching thousands of pediatricians and launching our medical community awareness campaign with the tag line “Have you seen this child?”
  • We published the 4th Annual Fall Calendar that featured the faces of our beautiful children and adults.
  • More funds were raised with the 6th Stock Sweepstakes and 7th Friends and Family Letter Fundraiser.
  • The What’s New With 22q Newsletter was published with rave reviews.

2008

  • An International 22q1.2 Foundation grant of $10,000 supported the 6th International 22q11.2 Deletion Syndrome Conference in Utrecht, Netherlands.
  • The Our Foundation is was a proud supporter of the Elwyn Conference in Davis, California, USA in March with a grant of $5,000
  • We sponsored a booth at the American Society of Human Genetics (ASHG) conference in November in Philadelphia, Pennsylvania, USA with a grant of $4,000
  • Our supporters take took advantage of the 5th Stock Sweepstakes and the 6th Friends and Family Letter Fundraiser.
  • The Foundation welcomed new member Lisa Jennings to the Board
  • We published the 3rd Annual Fall Calendar, that features featured the faces of our beautiful children and adults.

2007

  • Our Foundation stepped up to co-sponsor the Elwyn Educator meetings in both Baltimore, Maryland, and Sacramento, California, USA.
  • A workshop on 22q11 and parent-professional partnership was offered at the Genetic Alliance meeting with Paula Goldenberg, Donna McDonald-McGinn and Lisa Jennings as presenters.
  • The 2nd Annual Fall Calendar Fundraiser was well received.
  • The 4th Stock Sweepstakes and 5th Family and Friend Letter Fundraiser took off with great success
  • The Foundation welcomed new members Melissa Maisenbacher and Ed Moss to the board
  • The Foundation elected Paula Goldenberg as Chair

2006

  • The 5th International 22q11.2 Deletion Syndrome Conference was held in Marseilles, France in July. Our Foundation was a sponsor with a grant of $10,000 for Young Investigators.
  • Our efforts resulted in travel grants for Victory Junction’s Hole in the Wall Camp.
  • We were proud to be the co-sponsor for the Elwyn Conference in Atlanta, Georgia, USA.
  • The Medical Research Fund was kicked off with a starting sum of $2,000.
  • The 3rd Stock Sweepstakes and the 4th Family and Friends Letter Fundraiser took off.
  • The first Fall Calendar Fundraiser was unveiled, beginning a tradition of showcasing our loved ones that would continue for years to come.
  • The Genetic Alliance Conference was held in Bethesda, Maryland, USA, featuring a booth and brochures presented by the International 22q11.2 Foundation.

2005

  • We became a proud sponsor for the The American Cleft Palate-Craniofacial Association (ACPA) pre-symposium.
  • We co-sponsored the Elwyn Conference in Media, Pennsylvania, USA and Family Fun Day. We also expanded our contacts.
  • Breaking ground as granters, the first travel grants were awarded to families for Victory Junction’s Hole in the Wall Gang Camp.
  • The Bike Ride Fundraiser took place for the second time.
  • Building on success, we presented the 2nd Stocks Sweepstake and 3rd Family and Friends Letter Fundraiser.
  • The Medical Advisory Board was created. It which is comprised of specialists representing a broad spectrum of medical and science disciplines related to the 22q11.2 syndromes. The Board’s responsibilities include:
    • Helping to analyze critique, and edit educational materials;,
    • Developing papers on topics related to various areas of the syndrome;
    • Representing the foundation at public forums; , and
  • Providing strategic advice and counsel as requested by the Board of Directors.
  • Many members of the Medical Advisory Board began the process of creating a set of Important progress is made as many members of the Medical Advisory Board created Clinical Guidelines for the 22q11.2 deletion Ssyndrome.
  • The 22q community is was proud for of the recognition when we win won design services from Hypno Design and Idea Lab of New Jersey. They provided us with a new logo, printed brochures, letterhead, and a new web page design…
  • With an eye on improving our image and disseminating quality information, webpage additions, updates and references are were undertaken.
  • The information booklet committee begins began work on this key reference for families.
  • We welcomed new member Karlene Coleman to the Board.

2004

  • Family members of Board member, Missy Disibio awarded us $10,00 to establish our first restricted programmatic fund, The Disibio Fund.
  • Contacts and networking took place at our first Wine and Cheese Social gathering.
  • The first version of our promotional “trifold” brochure was published. Design and acceptance of Our initial logo is featured on our first stationery printing.
  • We launched our initial website, which included the number of our dedicated 22q phone line.
  • Our Foundation took formal steps to achieve organizational credibility by obtaining Directors and Officers Insurance.
  • Many Board Members attended the International/ VCFSEF10th Annual International Meeting of the Velo-Cardio-Facial Syndrome Educational Foundation, Inc., and the Fourth International Conference for 22q11.2 Deletions in Atlanta, Georgia, USA where two members made presentations to the body.
  • The first Bike-Ride Fundraiser was a success.
  • The 1st Stocks Sweepstakes and 2nd Family and Friends Letter Fundraiser gave momentum to our fundraising.
  • We welcomed five new Board members: Paula Goldenberg, Brenda Finucane, Christine Moriconi, Kelly Thompson, and Lois Downey.
  • Several Board members spoke at Parents Night at the 22q and You Center at Children’s Hospital of Philadelphia, Pennsylvania, USA.

2003

  • In February, Mark Abissi extended an invitation to interested parties to attend a meeting to develop ideas for our new non-profit group.
  • The International 22q11.2 Deletion Syndrome Foundation was officially launched.
  • A name and a mission were created at our organization’s family picnic and the 501 (c) 3 status is was granted. Founding board members Mark Abissi (Chair), Dottie Specht (Vice-Chair), Missy Disibio (Secretary), Wendy Rose (Treasurer), Donna McDonald-McGinn, Mark Weinberg, and Carol Cavana worked together to launch The International 22q11.2 Deletion Syndrome Foundation, Inc.
  • 1st Family and Friends Letter Fundraiser was planned and executed.

Donate Today

At the International 22q11.2 Foundation we help families that need important resources and information to meet the needs of loved ones with 22q.

Donate