Timeline of Key Milestones
- The International 22q11.2 Foundation is officially launched. A name and mission are created at the organization’s family picnic and 501 (c) 3 status is 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 work together to launch The International 22q11.2 Deletion Syndrome Foundation, Inc.
- 1st Family & Friends fundraiser is planned and executed
- Contacts and networking take place at our first Wine and Cheese Social gathering.
- The first version of our promotional “trifold” brochure is published.
- The 1st Stocks Sweepstakes and 2nd Family and Friends Fundraiser give momentum to our fundraising
- The foundation welcomes Christine Moriconi, Paula Goldenberg and Brenda Finucane onto the board
- We become a proud sponsor for the The American Cleft Palate–Craniofacial Association (ACPA) pre-symposium.
- We Co-sponsor the Elwyn Conference in Media, Pennsylvania, USA and Family Fun Day, we expand our contactsBreaking ground as granters, the first travel grants are awarded to families for Victory Junction Hole in the Wall Gang Camp
- The second Bike Ride Fundraiser.
- Building on success, we present the 2nd Stocks Sweepstake and 3rd Family and Friends Letter Fundraiser.
- The medical advisory board was created which is comprised of specialists representing a broad spectrum of medical and science disciplines related to the 22q11.2 syndromes. The Boards responsibilities include helping to analyze critique and edit educational materials, develop papers on topics related to various areas of the syndrome. Represent the foundation at public forums, and provide strategic advice and counsel as requested by the Board of Directors.
- Important progress is made as many members of the Medical Advisory Board created Clinical Guidelines for the 22q Syndrome.
- The 22q community is proud for the recognition when we win design services from Hypno Design and Idea Lab of New Jersey providing 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 undertaken.
- The information booklet committee begins work on this key reference for families.
- The 5th International 22q11.2 Deletion Meeting is held in Marseilles, France in July. The Foundation is a sponsor with a grant of $10,000 for Young Investigators.
- Our efforts result in travel grants for Victory Junction Hole in the Wall Camp.
- Proud to be the co-sponsor for the Elwyn Conference in Atlanta, Georgia, USA.
- The Medical Research Fund is kicked off with a beginning sum of $2,000
- The 3rd Stock Sweepstakes and the 4th Family and Friends Fundraiser take off
- The first Fall Calendar Fundraiser is unveiled beginning a tradition of showcasing our loved ones that will continue for years to come.
- The Genetic Alliance Conference is held in Bethesda, Maryland, USA featuring a booth and brochures presented by the International 22q11.2 Foundation.
- The Foundation steps up to co-sponsor both the Elwyn Educator meeting in Baltimore, Maryland, USA and also in Sacramento, California, USA.
- A workshop on 22q11 and parent-professional partnership is offered at the Genetic Alliance meeting with Paula Goldenberg, Donna McDonald-McGinn and Lisa Jennings as presenters.
- The 2nd Annual Fall Calendar Fundraiser is well received
- The 4th Stock Sweepstakes and 5th Family and Friend letter took off with great success
- In 2007 the foundation welcomed Melissa Maisenbacher
- The foundation elects Paula Goldenberg as Chair
- The foundation welcomes Ed Moss on the board
- An International 22q1.2 Foundation grant of $10,000 supports the 6th International 22q11.2 Deletion Conference in Utrecht, Netherlands.
- The Foundation is a proud supporter of the Elwyn Conference in Davis, California, USA in March with a grant of $5,000
- We sponsor a booth at the American Society of Human Genetics (ASHG) in November in Philadelphia, Pennsylvania, USA with a grant of $4,000
- Our supporters take advantage of the 5th Stock Sweepstakes and the 6th Friends and Family Fundraiser.
- The foundation welcomes Lisa Jennings onto the board
- Our kids are the stars in the Third Annual Fall Calendar Fundraiser
- The Foundation awards a $5,000 grant 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 raises funds to support 22q research.
- The 22q/DiGeorge Walkathon in Chicago, Illinois, USA raises awareness of 22q with promotional items and branded shirts worn by the walkers.
- The Night in Venice Fundraiser raises $15,000 in Philadelphia, Pennsylvania, USA in September.
- The 22q community is pleased to see the October launch of the Foundation’s 22q Facebook Group.
- American Academy of Pediatrics meet in Washington, DC, USA in October featuring a 22q exhibit. The Foundation supports the gathering with a grant of $10,000. We place a half-page ad in the American Academy of Pediatrics ad book, reaching thousands of pediatricians and launching our medical community awareness campaign with the tag line “Have you seen this child?”
- We publish the Annual Fall Calendar, a fundraiser that features the faces of our beautiful children.
- More funds are raised with the 6th Stock Sweepstakes and 7th Friends and Family Letter Fundraiser.
- The What’s New With 22q Newsletter is published with rave reviews.
- The Foundation awards a grant of $5,000 to support the Elwyn Conference held in February in Gainesville, Florida. The conference targets behavior and learning in children with the 22q11.2 Deletion Syndrome.
- We launch our first Facebook Cause and pages and postings explode and proliferate around the web and the globe.
- We continue to provide information, resource ideas and moral support for countless parents and medical professionals who reach out to us by phone or e-mail as a result of finding us on the web.
- More than 800 complimentary parent binders are delivered into the grateful hands of individuals and hospitals where they are distributed to 22q families. The binders help families organize medical records, contact information and notes and includes the educational booklet – Birth to Five.
- The Foundation contributes significant financial support to the Dragonfly Forest Camp for a wonderful summer week of overnight camp dedicated exclusively to campers with 22q..
- The 7th Biennial International 22q Conference is held in Coventry, England and receives significant financial support from the Foundation. Several hundred parents and professionals from all over the world come together, including several members of our Board, to hear about new developments, share research, network, bond and plan.
- We produce 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 is known, we launch the Same Name Campaign.
- The foundation elects Carol Cavana as Chair
- The 1st 22q at the Zoo Worldwide Awareness Day is held in May to spread 22q awareness while bringing together families and friends at zoos all around the globe.
- We receive 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 is staffed in March 2011 at The Federation for Children with Special Needs Conference held in New England. Lisa Jennings and her troop of volunteers help raise awareness about the Syndrome by handing out brochures and binders.
- Parent grants are part of important support for the Elwyn Genetics 22q Conference in Indianapolis, Indiana. The conference is held in April.
- The Board welcomes new Board members, Sheila Kambin and Fred Weiner.
- The Foundation contributes 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 provides a fun-filled week of activities for parents and siblings while their child and sibling campers enjoy Dragonfly Forest Camp
- We kick off the Tell 22 About the 22q Campaign. The campaign is 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 awards a grant to continue our parent binder program.
- We produce our 7th annual awareness-raising Calendar featuring our faces sunshine
- Our New Name was launched – We are now known as The International 22q11.2 Foundation, Inc. Why the change? The words “Deletion Syndrome” are being dropped 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.
- The 8th Biennial International 22q11.2 Deletion Syndrome Conference is held July 6-10, 2012 at Disney’s Yacht and Beach Club Resorts in Lake Buena Vista, Florida, USA. Our Foundation is proud to be the lead sponsor and convening organization for the family portion of this conference.
- The Foundation cordially requests the pleasure of your absence at the 2012 No Show Valentine’s Ball. It is a great success thanks to friends, family members and donors who have a great time “not showing up.”
- The Tell 22 About 22q Campaign reaches over $10,000. Students from Maryland through New Jersey raise 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 22nd spanning more than 12 countries on four continents, including 65 cities.
- We produce our 8th annual awareness-raising Calendar featuring our faces sunshine
- The foundation elects Sheila Kambin as Chair
- April 2013, Julie and Paul Wootton from Max Appeal arranged a meeting at the British House of Commons for Parliament Members and invited speakers, including Board Member Donna McDonald-McGinn, MS, LCGC. 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 19th spanning 82 cities on 6 different continents. An estimated 10,000 participants attended.
- We produce our 9th annual awareness-raising Calendar featuring our faces sunshine
- The 9th Biennial International 22q11.2 DS meeting took place in Palma de Mallorca, Balearic Islands, Spain on Thursday June 19th to Sunday June 22nd. The 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 page was created in 2014 to help guide families and professionals to make a change and raise awareness by helping the foundation reach this goal! Our 22q Programming includes support and resources for families, and continued efforts towards bringing newborn screening to a reality, as well as 22q Awareness, especially 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 18th 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 sunshine
- The 5th Annual 22q at the Zoo Worldwide Awareness Day took place on Sunday, May 17th 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 raise 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 is supported by 22q Ireland, the 22q11.2 Society, and Max Appeal.
- The Ugly Sweater Run: During the holiday season the Foundation, Inc. raises awareness for 22q11.2 deletion and duplication syndromes with a family friendly 5K fun run/walk in 10 locations across the US
- The Foundation launches a new website. The website has 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: The Foundation publishes 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.
- We conduct an online survey as part an effort to better understand and meet the needs of the worldwide 22q community. Sadly, earlier in the year, two other national organizations for 22q closed. Understanding that the loss of these two organizations would have a significant impact of the flow of information to families, the International 22q11.2 Foundation prepared to adjust its priorities in order to address these changes within the 22 community. As part of our process, we created a 22q community survey. See the survey results here
- 22q11.2 Deletion Syndrome Featured in Leading Scientific Journal
- An extensive review of the 22q11.2 Deletion Syndrome was published on November 19, 2015 in Nature. Nature is a British interdisciplinary scientific journal which is highly regarded among leading researchers and has been ranked the world’s most cited scientific journal. This journal claims an online readership of about 3 million readers per month. This is exciting because it brings focus and education about 22q11.2DS to the scientific community. In addition, the article supports many of International 22q11.2 Foundation initiatives such as “The 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 raising 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 produce our 11th annual awareness-raising Calendar featuring our faces sunshine
- We create 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.
- Important progress is made as many members of the Medical Advisory Board initiate and create Clinical Guidelines for the 22q Syndrome.
- The International 22q11.2 Foundation, Inc., is the lead sponsor for The 10th Biennial International 22q11.2 Syndrome Family Conference in Sirmione, Italy. Families and medical professionals from around the globe attended the conference to get the most up to date research and information. The International 22q11.2 Foundation, Inc., Medical Advisory Board Members were among the highlighted speakers at the conference.
- May – The 6th Annual 22q at the Zoo Worldwide Awareness Day took place on Sunday, May 15th spanning 115 cities in the US and 24 cities internationally on 6 different continents. An estimated 10,000 participants attended.
- We produce our 12th annual awareness-raising Calendar featuring our faces sunshine
- Rock ‘N’ Roll and family fun series takes place in Philadelphia and Denver, USA
- The 7th Annual 22q at the Zoo Worldwide Awareness Day took place on Sunday, May 15th spanning 115 cities in the US and 24 cities internationally on 6 different continents.
- We produce our 13th annual awareness-raising Calendar featuring our faces sunshine
- Click here to view our infographic designed for our advocacy campaign
- International 22q11.2 Foundation welcomed Nicole Mark and Mindy Taylor onto the board.
- Ugly Sweater Run takes place in 10 locations around the USA as families, friends and professionals raise awareness during the holiday season
- 2.2 for 22q; Fun Ways to Fundraise Run, Swim, Bike, Walk, Ski, Hike, Skate or anything else? Take your favorite activity and turn it into a fundraising and awareness event for 22q. It’s easy. Just find an event already established in your community that you would like to join. Simply register for the event and encourage others to do the same.
- We create positions for the leads of our International collaborating organizations as affiliate board member. We welcome Julie Wootton from Max Appeal (England), Maria Kamper from 22q Australia & New Zealand (Australia), Anne Lawlor from 22q Ireland (Ireland), Giulietta Angelelli Cafiero from Aidel22 (Italy).
- The Foundation, is the lead sponsor for the family conference at the 11th Biennial International 22q1.2 Syndrome Conference in Whistler, BC Canada.
- We introduce our new tagline… “Detect – Know – Grow!” Having spoken with families and friends, we are proud to unveil the tagline which more accurately aligns with our organization’s focus to support families and share information about 22q11.2 deletion and duplication.
- The 8th Annual 22q at the Zoo Worldwide Awareness Day will take place on Sunday, May 20th.