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 this significant conference.
The Foundation launches the 22q Shoppe on site at the Disney Conference and on-line.
The Foundation launches its new version of 22q.org with help from a grant from The Robert Wood Johnson Foundation.
Our New Name: 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 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 event raises more than $3,000.
April 22 kicks off our 2nd Annual 22q at the Zoo Worldwide Awareness Day, spanning more than 12 countries on four continents, including 65 cities. This unique event gives 22q families a chance to socialize and network while raising the public profile of these common but poorly recognized conditions. The event kicks off in Sydney, Australia at 11am and continues westward, around the globe.
The Tell 22 About 22q Campaignreaches 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.
The 7th annual, awareness-raising 22q Calendar waits for our family’s best photos. The2013 Calendar will feature gorgeous faces of 22q-affected children. To enter, email a photo, along with the signed consent form, by September 30, 2012 to info@22q.org. The consent form can be downloaded at www.22q.org.
Paula Uccello and Colleen Ciak, parents of affected children join our Board bringing extensive public relations and fundraising experience.
Dr. Anne Bassett is welcomed to the Board and as Chair of our Medical Advisory Board.
Our new logo is designed and launched evolving the original awarded design.
2011
We receive $7,500 from the Robert Wood Johnson Foundation to significantly 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 supportfor theElwyn Genetics 22q Conference in Indianapolis, Indiana. The conference is held in April.
The Board welcomes new Board members, Sheila Kambin and Fred Weiner.
The 1st22q at the Zoo Worldwide Awareness Day is held on April 22to spread awareness about the chromosome 22q11.2 Syndrome while bringing together families and friends at zoos all around the globe.
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 the Deletion. The kids enjoy the week from June 29 to July 4.
22q Family Activity Week provides afun-filled week of activities for parents and siblings while their child and sibling campers enjoy Dragonfly Forest Camp the week of June 29.
We kick off the Tell 22 About the 22Q Campaign in June to raise $222,000 in a year-long fundraiser. 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 us a significant grant to continue our parent binder program.
2010
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.
A Strategic Planning Meeting with Nancy Smythe, ACPA takes place in May.
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 the Deletion.
The 7thBiennial 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.
On the heels of the 7th Biennial Conference, we make a significant commitment to become the lead sponsor and convening organization for the 8th Biennial International 22q Conferencescheduled for July 6 -10, 2012 on the Disney property in Orlando, Florida, USA.
We produceour 6th annual awareness raising Calendar featuring gorgeous faces of 22q-affected children.
In an effort to clear up the confusion over multiple names by which the Deletion is known, we launch theSame Name Campaign. (Look for more information about this ongoing challenge and the awareness campaign in the enclosed newsletter and on our website.)
We begin to plan two fund and friend raisers. 22q and Boo! is the best Halloween party of the season and a chance to come together in support of the Foundation. It is held on October 30 at Finnegan’s Wake in Philadelphia, Pennsylvania, USA. The goal of our expanded annualStock Market Contestis to create an opportunity for friends and families to reach out to 22 friends and family members. Donors are able to access the contest through the website for the first time.
2009
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 tournament is held during a mid-summer weekend.
The 22q/DiGeorge Walkathon in Chicago, Illinois, USA takesplace in August and raises awareness of 22q with promotional items and branded shirts worn by the walkers.
The Foundation awards a $1,120-grant to support a conference on educational and behavioral aspects of the 22q11.2 Deletion Syndrome. It is held in Wyomissing, Pennsylvania, USA in September.
The Night in Venice Fundraiser raises $15,000 in Philadelphia, Pennsylvania, USA in September. Finnegan’s Wake is transformed into an Italian bistro.
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?”
For the fourth year 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 to rave reviews.
2008
Our slogan,Detection. Care. Cure, promoting early detection and the best care possible, is created.
A 22q Foundation grant of $10,000 supports the 6th International 22q11.2 Deletion Conference in Utrecht, Netherlands.
Information binders for 22q families are compiled and distributed.
Our kids are the stars in the Third Annual Fall Calendar Fundraiser
Our supporters take advantage of the 5th Stock Sweepstakes and the 6th Friends and Family Fundraiser
A big step is taken to hire our first part-time, Foundation Administrator, giving us the support we need beyond the excellent efforts of our volunteers.
We sponsor a booth at the ASHG in November in Philadelphia, Pennsylvania, USA with a grant of $4,000.
The 22q Foundation Board welcomes Lisa Jennings as a new member
Funding for Medical Research Fund reaches $4,000.
The Foundation is a proud supporter of the Elwyn Conference in Davis, California, USA in March with a grant of $5,000.
2007
The informational booklet - Birth – Preschool, goes to press.
We welcome four new Board members: Ed Moss, Melissa Maisenbacher, Marilyn Cohen and Terry Ferrari.
Board members receive a newly created Board packet and families have access to the Parent-Family information packet.
Strategic Planning takes place along with Rusty Long.
The 2nd Annual Fall Calendar Fundraiser is well received as is the 4thStock Sweepstakes and 5th Family and Friend letter.
The Board proudly votes for Paula Goldenberg to serve as Chair.
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 Foundation steps up to co-sponsor both the Elwyn Educator meeting in Baltimore, Maryland, USA and also in Sacramento, California, USA.
2006
Proud to be the co-sponsor for the Elwyn Conference in Atlanta, Georgia, USA.
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.
We raise awareness with an eye-catching car magnet featuring the 22q logo.
Our efforts result in travel grants forVictory Junction Hole in the Wall Camp.
A grant application is developed and posted on our webpage to encourage research and programming.
The 3rd Stock Sweepstakes and the 4th Family and Friends Fundraiser take off.
The Genetic Alliance Conference is held in Bethesda, Maryland, USA featuring a booth and brochures presented by the 22q Foundation.
The informational booklet committee finalizes the format and content of this valuable resource.
The MedicalResearch Fund is kicked off with a beginning sum of $2,000.
The 22q Foundation is a proud participant, featuring a booth with brochures, at the Stratesburg VCFSEF Conference.
Important progress is made as many members of the Medical Advisory Board initiateClinical Guidelines for the 22q Syndrome.
The first Fall Calendar Fundraiser is unveiled beginning a tradition of showcasing our kids that will continue for years to come.
The 22q brand and image gets a boost with the production of the 22q Book Bag.
2005
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 webpage design, all at no cost to the Foundation.
The creation of our Medical Advisory Board is an important milestone.
We become a proud sponsor for the ACPA pre-symposium.
As co-sponsor of the Elwyn Conference in Media, Pennsylvania, USA and Family Fun Day, we expand our contacts.
Setting goals and objectives takes place at the first Strategic Planning Meeting in February.
The Bike Ride Fundraiser takes place for the second time.
The Board welcomes Carol Cavana as Secretary.
Breaking ground as granters, the first travel grants are awarded to families for Victory Junction Hole in the Wall Gang Camp.
Building on success, we present the 2nd Stocks Sweepstake and 3rd Family and Friends Letter Fundraiser
An every-other-month conference call keeps us connected and communicating.
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.
We welcome Karlene Coleman to the Board.
2004
Family members of Board member, Missy Disibio award us $10,00 to establish our first restricted programmatic fund, The Disibio Fund.
Contacts and networking take place at our first Wine and Cheese Social gathering.
The first version of our promotional “trifold” brochure is published.
Design and acceptance of our initial logo is featured on our first stationery printing.
The initial website goes live including the number of our dedicated 22q phone number.
The Foundation takes formal steps to achieve organizational credibility by obtaining Directors and Officers Insurance.
Many Board Members attend the International/ VCFSEF conference in Atlanta, Georgia, USA where two members make presentations to the body.
The first Bike-Ride Fundraiser is a success.
The 1st Stocks Sweepstakes and 2nd Family and Friends Fundraiser give momentum to our fundraising.
We welcome five new Board members: Paula Goldenberg, Brenda Finucane, Christine Moriconi, Kelly Thompson, Lois Downey.
Several Board members speak at Parents Night at the 22q and You Center at Children’s Hospital of Philadelphia, Pennsylvania, USA.
2003
The 22q Foundation is officially launched in December as 501 (c) 3 status is granted. We align ourselves with a lawyer, an initial bank account, flyers and bylaws and the Board begins to meet every other month.
The Foundation is launched informally in July when the name and mission statement are created at the organization’s first family picnic.
The first Family & Friend’s Fundraiser is planned and executed.
Founding Board members Mark Abissi (Chair), Dottie Specht (Vice-Chair), Missy Disibio (Secretary), Wendy Rose (Treasurer), Donna McDonald-McGinn, Mark Weinberg, and Carol Cavana come together to launch The International 22q11.2 Deletion Syndrome Foundation, Inc.
In February, an invitation is extended by Mark Abissi to interested parties to attend a meeting to develop ideas for our new non-profit group.
