22q in the News

• Ryan Dempster named Chicago Cubs nominee for the 2011 Roberto Clemente Award
• Mt. Bierstadt climb - increasing 22q awareness in Colorado
• 22q at the Zoo! YouTube video
• Coverage of the 22q at the Zoo event, Blacktown Advocate, Australia
• 22q at the St. Paul, MN Zoo
• Foundation chairperson, Carol Cavana, spreads awareness on CBS News, Philadelphia, US

Collaborative Group Marches on Washington, DC to Promote Newborn Screening for 22q!
In an historic moment on January 26, 2012, groups from throughout the United States, Canada, and the UK 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. In an interesting turn of events, the Committee had already predetermined that the application to add 22q11.2 screening to the current federally mandated list of newborn screening studies be denied, prior to any public comments or proponent group presentation, based on a lack of pilot study evidence to support the proposal. However, following an extremely convincing and eye opening presentation by the Newborn Screening Proponents, the Committee agreed to re-hear the proposal once such pilot data is submitted into evidence. To this end, the collaborating parent organizations (The International 22q Foundation, Max Appeal, and the Dempster Family Foundation - with hopes that other such organizations will join in the very near future) have agreed to begin a rapid and restricted fund raising campaign to allocate the necessary funds for such an endeavor. With that said, please consider making a donation to any of the respective funds as soon as possible.

2012 Awareness Calendars
Buy calendars for friends, family, and co-workers. Get one for your child's doctor, teacher, or therapist. Each calendar month features a fabulous photo of a person with the deletion. The Foundation calendar is a great way to spread the word about 22q!
See the list of 2012 photo contest winners and order your calendar online today

8th International 22q11.2 Deletion Conference - July 7-10, 2012
The Foundation has made a significant commitment to become the lead sponsor and convening organization for the
8th Biennial International 22q Conference to be held at Disneyworld, Orlando, Florida.

Call for Abstracts for Professional Papers - 8th International 22q11.2 Deletion Conference
The conference organizing committee invites professionals to submit their best work for consideration and inclusion in the conference prgram. Learn more

22q at the Zoo! Worldwide Awareness Day 2012
Organized and developed by The International 22q11.2 Deletion Syndrome Foundation, 22q at the Zoo! Worldwide Awareness Day will take place on Sunday April 22, 2012 at zoos all around the world. This fabulous event is aimed at raising the public profile of chromosome 22q11.2 deletion syndrome. Get the scoop - organize an event at a zoo near you!

22q11.2 Deletion Syndrome Conference on Behavior and Learning
Once again, the Foundation provided financial support for a family-friendly conference on the educational and behavioral aspects of the 22q11.2 deletion syndrome. The latest conference, sponsored by Elwyn Genetics in collaboration with Children's Hospital Colorado, took place in Aurora, Colorado on October 1 - 2, 2011. The Foundation has supported similar Elwyn conferences at sites around the US over the past few years. Access handouts from the conference

The Dempster Family Foundation 2011 Awareness Tour
Chicago Cubs Pitcher Ryan Dempster’s Family Foundation hit the road from August 18th to August 29th to spread awareness about the 22q11.2 deletion syndrome. During this two-week period, the Dempster Family Foundation 22q Awareness Tour lit up the social media scene (including daily posts from the road and online video blogs) — all to drive awareness of 22q. Learn more

Dragonfly Forest Summer Camp and Family Activity Week
Once again this year, Dragonfly Forest offered kids with the 22q11.2 deletion a fabulous week of overnight summer camp, completely free of charge, made possible in part by the generous support of The International 22q11.2 Deletion Syndrome Foundation.  The camp took place at the beautiful Westtown School in West Chester, Pennsylvania from June 29^th – July 4, 2011, and the campers had a blast! Concurrent with the summer camp, a special 22q Family Activity Week was held near Philadelphia for parents and siblings of the campers.

Nebraska Proclaims 22q11.2 Deletion Syndrome Day
The Nebraska state legislature formally recognized May 22, 2011 as "22q11.2 Deletion Syndrome Day." Congratulations to all the families who worked to make this happen! See the proclamation

Foundation Launches the Same Name Campaign
One of the Foundation's main goals is to increase awareness about the 22q11.2 deletion syndrome among professionals and the general public. A major barrier to awareness is the use of several outdated names for what we now know to be the same condition. Genetically, there is no difference in the microdeletions found in people with VCFS versus those with DGS or the other related syndromes - they are all manifestations of the same diagnosis: the 22q11.2 deletion syndrome. Having several different names further divides our small 22q community and presents a significant obstacle to public and professional awareness. This year, the Foundation is pleased to launch the "Same Name Campaign", an outreach effort that educates professionals and families while uniting us all for a common cause. Won't you help? Learn more about the Same Name Campaign

Frightful Fun at 22q and Boo!
Families and supporters of the Foundation laughed the night away at our recent 22q and Boo fundraising event in Philadelphia. Many thanks to our major sponsor Dietz and Watson and to the many volunteers who made this event possible. Check out these photos from the event

7th International 22q11.2 Deletion Conference, Coventry England

Treatment As We Move Into A New Decade" was the theme as families and researchers from around the globe gathered in attendance for the 7^th Biennial International 22q11.2 Deletion Syndrome Meeting hosted by Max Appeal in Coventry, England from July 29^th – 31, 2010 and supported in part by the International 22q11.2 Deletion Syndrome Foundation.  Highlights included presentations on clinical practice guidelines, cutting edge research, family support, and international collaborations.  Next up – the 8^th International Meeting to be held in Orlando, FL from July 7 – 10, 2012 at the fabulous Disney Yacht and Beach Club.  Mark your calendars as it is sure to be an event not to be missed!

Colorado Declares 22q11.2 Deletion Syndrome Awareness Week
In June, the Colorado General Assembly adopted a joint resolution (10-043) proclaiming the week of August 22-28, 2010 to be "22q11.2 Deletion Syndrome Awareness Week." This is a monumental moment for all patients, families, and professionals who have been working tirelessly to bring awareness of this common but frequently unknown diagnosis to the public forefront.  The Foundation hopes that Colorado is the first of many forward thinking states to adopt such a resolution, as we partner to spread the word about this diagnosis throughout the US and beyond.

Cubs Pitcher, Ryan Dempster, Greets 22q Families in Philadelphia On May 19th, Chicago Cubs pitching ace, Ryan Dempster, signed autographs and gave out t-shirts to fans at The Children's Hospital of Philadelphia ((34th & Civic Center Blvd, Philadelphia, PA 19104). The pitcher was in Philadelphia with the Cubs who were playing the Phillies that week. Ryan Dempster, along with his wife, Jenny, founded the Dempster Family Foundation, after their daughter Riley, was born with the 22q11.2 deletion in 2009. For more information, check out their website at www.dempsterfoundation.org

22q Gets Positive Exposure
On December 14, 2009, photographer Rick Guidotti gave a very special presentation in Media, Pennsylvania about his inspiring work photographing people who have genetic conditions. His talk was followed by a photo shoot for children and adults with special needs. Rick has held photo shoots for 22q families in Atlanta and Sacramento over the past few years, and he is largely responsible for the gorgeous photos on this website. To learn more about his work, visit www.positiveexposure.org

22q Foundation Increases Awareness Among Pediatricians
In October 2009, the Foundation placed a half page ad about the 22q deletion in a publication of the American Academy of Pediatrics, reaching thousands of pediatricians. We also hosted an exhibit at their annual convention in Washington, DC. Foundation administrator, Tom Bell, and Board member, Terry Ferrari, personally spread the word about 22q to hundreds of pediatricians who visited our booth. Tom and Terry sent them home with brochures and goodies, including bright red 22q
tape measures, in the hope that they will always remember to "think 22q" in their practice. Click here to see the ad.

A Night in Venice
On September 12, 2009, over 130 people turned out for a fun evening of food and entertainment on behalf of the Foundation.
The event was held at Finnegan’s Wake in downtown Philadelphia. Guests enjoyed great food and drinks while trying their luck at gaming tables and auctions — all with the goal of supporting the Foundation's efforts toward detection, care, and cure.
Many thanks to board members Donna McDonald-McGinn and Carol Cavana for their amazing efforts on this fundraiser!

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