Accomplishments

Throughout the years, The International 22q11.2 Foundation has made strides in the 22q community. After officially launching in December of 2003, the foundation has worked hard each year to ensure families have a place to turn in regards to becoming educated about 22q11.2 Chromosome Syndrome. Between hosting a variety of fundraisers to participating in worldwide conferences, members of the Foundation work hard to spread the word about 22q11.2 awareness. Take a look at our many accomplishments over the years and see how we’ve grown.

2016 News

Sirmione, Italy 22q Conference

July 2016: Sirmione, Italy

The International 22q11.2 Foundation, Inc., was the lead sponsor for family meeting in Italy at the 22q conference. Families and medical professionals from all over attended the conference to get the most up to date research and interventions information. The International 22q11.2 Foundation, Inc., Medical Advisory Board Members were among the highlighted speakers at the conference sharing their information.

22q at the Zoo

In 2016 zoos around the world witnessed an extraordinary gathering of 22q families. The 5th 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.

This very special awareness day and friend-raiser gives families touched by 22q a chance to socialize, network and raise the public profile of 22q.

In 2016, the international event kicked off at 11am in Sydney, Australia and continued westward around the world

GOAL FOR 2017: EVERY STATE IN THE U.S. REPRESENTED

Please join our cause. We need you. Please email info@22q.org for more details.

Ugly Sweater Run

During the 2016 holiday season the International 22q11.2 Foundation, Inc. raised awareness for 22q11.2 deletion and duplication syndromes with a family friendly 5K fun run/walk!

This occurred in 11 locations across the US!

December 3, 2016                                                                         

  • Atlanta, GA
  • Hartford, CT
  • Seattle, WA

December 4, 2016

  • Cleveland, OH

December 10, 2016

  • Boston, MA
  • Chicago, IL
  • Dallas, TX

December 17, 2016

  • Baltimore, MD
  • Denver, CO
  • Philadelphia, PA
  • Washington, DC

2016 Rock ‘N’ Roll and Family Fun Run Series

  • Runners, walkers, and volunteers raised awareness for 22q11.2 deletion and duplication syndromes by participating in the Philadelphia and Denver, USA Rock ‘n’ Roll Half Marathon (22k) or Fun Run (5k or 10k) series.

“My Child has 22q”

February 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.

Resources for Teens and Adults

February 2016: Many potential challenges exist for parents as they help guide their adolescent or young adult child who has a 22q11.2 syndrome. The goal is to have him or her become capable and competent in making good life choices. New Transition Fact Sheets are designed for both parents/caregivers and other family members, including those with 22q11.2. The Fact Sheets cover Mental Health, Sexual Health and Alcohol. View and download the Fact Sheets here

Girl Scout Gold Award About 22q

January 2016: Special Education Girl Scout creates a PSA about 22q Deletion Syndrome. She hopes to expand awareness about 22q and help families, educators and clinicians. Watch here

Faces of 22q 2017 Calendar

On behalf of the entire International 22q11.2 Foundation, Inc., it is our distinct pleasure to announce the children to be featured in our 2017 “Faces of 22q” Calendar. This year was particularly challenging as so many wonderful photos were submitted, we have included as many entries as possible throughout the calendar as well as the following youngsters representing their respective months:

January – Bella P., from Anchorage, Alaska and Arya F., from Las Vegas, Nevada

February – Tyler A., from Atlanta, Georgia

March – Ella T., from Sparta, Michigan and Claire M., from LaGrange, Georgia

April – Zoe Serafina B., from Tigard, Oregon and Scarlett G., from Marlton, New Jersey

May – Elysiana P., from Gibraltar, Michigan

June – Jolie L, from Perry, Ohio

July – Jackson A., from Thibodaux, Louisiana, Zachary A., from Alpharetta, Georgia and Benjamin N., from Levittown, Pennsylvania 

August – Scarlett L., from Cherry Hill, New Jersey and Amelia S., from Pinehurst, North Carolina

September – Bruno J., from Sydney, Australia, Luke J., from Waxhaw, North Carolina,  Jonivin M., from Commerce City, Colorado and Svetlana C., from Rochester Minnesota

October – Daryhani H., from Tampa, FL

November – Dougie B, from Coal City, Illinois, Willa Mena P., from Orefield, Pennsylvania, Colby D, from Lake in the Hills, Illinois and Sarah Grace P, from Sevierville, Tennessee

December – Davey Jean P., from Fresno, CA

…and the 2017 Cover goes to Sonia K., from Altadena, CA, Amaya A., from Loxahatchee, FL and Link H., from Pensacola, FL

Many thanks to all who submitted photos and we very much hope you enjoy the calendar as well as all of the beautiful faces of sunshine throughout the New Year!

This calendar is a great way to show your 22q pride and support for 22q. Additionally, this item makes a lovely holiday gift; so don’t forget to order to ensure all orders can be filled.

All proceeds benefit The International 22q11.2 Foundation, Inc. so please feel free to order early and often!!!

Same Name Campaign

Because of the way our understanding of the 22q11.2 deletion evolved, several different names continue to be used for what we now know to be the same condition. These older terms include DiGeorge syndrome (DGS), velo-cardio-facial syndrome (VCFS), conotruncal anomaly face syndrome (CTAF), Opitz G/BBB syndrome, and Cayler cardiofacial syndrome.

Unfortunately, having a syndrome that is called by several different names can lead to negative consequences, not to mention the general confusion it creates among parents and professionals The Foundation launched the Same Name Campaign, an educational effort aimed at professionals and families, with the goal of establishing consistent terminology for the 22q11.2 deletion syndrome. The Foundation will of course continue to link our website to all related groups indefinitely, regardless of what name they choose to use for this condition, to make sure that anyone searching for information has the best chance of locating it.

The Campaign

The Foundation’s efforts include:

  • Presentations at regional, national, and international meetings for genetics and other professionals involved in diagnosing the deletion.
  • Distribution of a descriptive postcard encouraging consistent use of the 22q11.2 diagnosis instead of older names. Postcards will be sent to genetic counselors and geneticists throughout the US, included with materials sent to new families contacting the Foundation, and distributed at professional conferences through our traveling exhibit.
  • Working toward consensus among professional and support organizations throughout the world. We are pleased to already have the enthusiastic endorsement of Max Appeal, and The Colorado c22c Group; each of these groups supports the use of the 22q11.2 deletion designation and will inform their members about the campaign.
  • Encouraging publishers of professional journals to adopt consistent standards for naming the syndrome in all published articles.

How You Can Help

  • Think 22q! – Make the switch to 22q, even if you have used an older name for years. It may seem tough at first, but over time, “22q11.2 deletion” will seem like second nature.
  • Educate health care providers, including genetics specialists, about the effort to adopt a single name. – Since most families meet with a genetic counselor or geneticist at some point in their journey, these specialists represent a crucial gateway to diagnosis. Getting the word out to these key professionals will ensure that newly-identified children and adults go home with the right diagnosis name!
  • Support the Foundation’s work – Your tax deductible donation to the Int’l 22q11.2 Deletion Syndrome Foundation allows us to fund this and other initiatives that benefit people with the deletion and their families. You can donate online to help the foundation.
  • Pass it on! – Tell others in your 22q network about the Same Name Campaign.

What’s New with 22q?

2015 In Review

22q At The Zoo: In 2015 zoos around the world witnessed an extraordinary gathering of 22q families. 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.  An estimated 10,000 participants attended.

This very special awareness day and friend-raiser gives families touched by 22q a chance to socialize, network and raise the public profile of 22q.

In 2015, the international event kicked off at 11am in Sydney, Australia and continued westward around the world.

Dublin 22K for 22q Rock and Roll Half Marathon: On August 2, 2015 on the beautiful Emerald Isle 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).

This collaborative venture was supported by 22q Ireland, the 22q11.2 Society, Max Appeal, and our very own International 22q11. 2 Foundation, Inc.

 2015 Ugly Sweater Run! : During the 2015 holiday season the International 22q11.2 Foundation, Inc. raised awareness for 22q11.2 deletion and duplication syndromes with a family friendly 5K fun run/walk!

This occurred in 10 locations across the US!

On December 12, 2015                                          

  • Boston, MA
  • Chicago, IL
  • Colorado Springs, CO
  • Sacramento, CA
  • Washington, DC

On December 19, 2015

  • Atlanta, GA
  • Baltimore, MD
  • Denver, CO
  • Philadelphia, PA
  • Tempe, AZ

 International 22q11.2 Foundation New Website: This summer the International 22q11.2 Foundation launched a new website.

The new website has a new design and layout that helps users to navigate through the site faster and easier so they can locate the needed information they are searching for.

Family Support Network: The International 22q11.2 Foundation is pleased to provide this list of family support organizations within the United States. Do you know of or have a 22q11.2 organization? If so, let us know at info@22q.org. (We are rebuilding the network, so if there is not a group or contact in your state or area, please consider helping to start one! If you are listed, but the information needs to be updated, let us know that too.) Visit here

2.2 mile Run/ Walk for 22q: On Friday, October 23, 2015, 2.2-mile run/walk was held at the NSGC (National Society for Genetic Counselors) Conference in Pittsburgh, PA.

200% of the race registration went directly to The International 22q11.2 Foundation:

  • 100% is donated directly
  • 100% is matched by Natera

2015 Survey Results: Summary of 22q11.2 Community Survey Results

In October of 2015 the ­International 22q11.2 Foundation published 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

November 2015: 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’s initiatives such as “The Same Name Campaign”, early diagnosis, including newborn screening, and the importance of early intervention strategies.

Learn more here

22q Faces of Sunshine Calendar Contest Winners: On behalf of the entire International 22q11.2 Foundation, Inc., it is our distinct pleasure to announce the children to be featured in our 2016 “22q Faces of Sunshine” Calendar.  This year was particularly challenging as so many wonderful photos were submitted, but we have managed to include the majority of entries throughout the calendar as well as the following youngsters representing their respective months.

Here is the list of beautiful faces that have been chosen for individual months:

January – Sarah Grace H., from Fairhope, Alabama

February – Josephine Jean M., from Pittsburgh, Pennsylvania

March – Nathan M., from Whangarei Northern, New Zealand

April – Celeste & Alexia M., from Marysville, California

May – Sophia V., from Plymouth Meeting, Pennsylvania

June – Jaden R., from New York Mills, New York

July – Tazia L., from Palm Harbor, Florida

August – Kenlie W., from Salem, Missouri

September- Chad R., from Old Bridge, New Jersey

October – Connor C., from Palmyra, Pennsylvania

November – Grace L., from West Monroe, Louisiana

December – Louis C., from Matawan, New Jersey

…and the 2016 Cover Guy is Luke S., from Delta, Pennsylvania

Many thanks to all who submitted photos and we very much hope you enjoy the calendar as well as all of the beautiful faces of sunshine throughout the New Year!

Calendars may be ordered at our website.

 All proceeds benefit The International 22q11.2 Foundation, Inc.

 22k for 22q: Do your own 22k for 22q event. Take your favorite activity and turn it into a fundraising and awareness event for 22q. Find an event already established in your community that you would like to join. Register for the event and encourage others to do the same.

Create your own 22q team and fill out the official registration form and we will post your event on the 22q website. We will supply you with the materials you need to help organize your event including fact sheets and “Ask Me about 22q” buttons for the day of the event. Your team will have their own web page to raise money and awareness for 22q.

Funds will go directly towards efforts to raise awareness of 22q. 22q doesn’t discriminate. It affects the people we hold most dear, our children, grandchildren, siblings, nieces, nephews, cousins, aunts, uncles, and friends. We have an incredible task ahead of us and we need your help. Be part of the momentum and start today.

 

 

 

  • 22q At The Zoo – In 2014 zoos around the world witnessed an extraordinary gathering of 22q families. 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. This very special awareness day and friend-raiser gave families touched by 22q a chance to socialize, network and raise the public profile of 22q.
    In 2014, the international event kicked off at 11am in Sydney, Australia and continued westward around the world.
  • Philadelphia RocknRoll Half Marathon – On Sunday, September 21, 2014 in Philadelphia the International 22q11.2 Foundation, Inc. – 22K for 22q was one of the main official charity partners for the Rock ‘n’ Roll Philadelphia Half Marathon. We had 33 runners in the event wearing our 22K for 22q singlets and many dedicated volunteers at the charity tent helping to raise awareness for 22q.
  • The 9th Biennial International 22q11.2 Syndrome Meeting –The 2014 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 first two days Thursday June 19th and Friday June 20th were devoted to the International Professional Program that included a wide range of topics; from research findings and clinical care to educational and behavioral strategies. The next two days, Saturday June 21st and Sunday June 22nd, were devoted to the International Family Program that 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 deletion syndrome and their families.
  • “2.2 for 22q” at the NSGC Conference – On September 19th, 2014 we helped to organize an awareness run for 22q at The National Society for Genetic Counselors Conference in New Orleans. This fun run helped educate the genetic counselors about 22q, increase awareness, promote early diagnosis, and raise money for 22q.
  • 22q Faces of Sunshine Calendar Contest Winners – It was our distinct pleasure to publish the 2015 “22q Faces of Sunshine” Calendar. It was particularly challenging as so many wonderful photos were submitted, but we managed to include the majority of entries throughout the calendar as well as the following youngsters representing their respective months.

Here is the list of beautiful faces that were chosen for individual months:

  • Cover: Clara F. From South Jordan Utah
  • January: Zander V. From Columbia, Illinois
  • February: Trinity W. From Rawlins, Wyoming
  • March: Julia U. From Colchester Connecticut Lily H. From Brisbane, Australia and Riley H. From Cincinnati, Ohio
  • April: Aniyah F. From Philadelphia, Pennsylvania
  • May: Zachary M. From St. Peter’s, Missouri
  • June: Elizabeth N. From Axtell, Texas
  • July: Emma W. From Waller, Texas
  • August: Sofia Van C. From Plymouth Meeting, Pennsylvania
  • September: Tate R. From West Chester, Ohio
  • October:  Joseph F. From Fort Pierce, Florida
  • November: Keira W. From Hampshire, United Kingdom
  • December: Brogan P. From Cardff, South Wales
  • 22q At The Zoo – In 2013 zoos around the world witnessed an extraordinary gathering of 22q families. 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. This very special awareness day and friend-raiser gives families touched by 22q a chance to socialize, network and raise the public profile of 22q. In 2013, the international event kicked off at 11am in Sydney, Australia and continued westward around the world.
  • 22k for 22q – 22k for 22q was kicked off on October 6, 2013 at the Smuttynose Rockfest Marathon/Half Marathon located at Hampton Beach New Hampshire. Do your own 22k for 22q event. Take your favorite activity and turn it into a fundraising and awareness event for 22q. Find an event already established in your community that you would like to join. Register for the event and encourage others to do the same. Funds will go directly towards efforts to raise awareness of 22q.
  • 22q Faces of Sunshine Calendar Contest Winners – This year was particularly challenging as so many wonderful photos were submitted, but we have managed to include the majority of entries throughout the calendar. Many thanks to all who submitted photos and we very much hope you enjoy the calendar as well as all of the beautiful faces of sunshine throughout the New Year! Calendars may be ordered via our website. All proceeds benefit The International 22q11.2 Foundation, Inc.
  • The International 22q11.2 Foundation, Inc. has a new logo – Over the past several years our Foundation has grown in many ways and we thought it was time for a new look. So, we have refreshed our logo to reflect who we are today and symbolize our dynamic future. As the magnifying glass is a tool to view small objects, it is meant to represent our overreaching goal of bringing awareness to this poorly recognized condition. Please be assured that our mission remains as true as ever.
  • VCFSEF, 22q International Foundation, and Dempster Family Foundation College Scholarship Winners – The Velo-Cardio-Facial Syndrome Education Foundation (VCFSEF) joined the 22q International Foundation and Dempster Family Foundation in providing two $500.00 scholarships to individuals who are either in college or graduating from high school and begin college in the Fall, 2014. The Scholarship Committee of the Cleft Palate Foundation oversaw the scholarships. (cleftline.org)
  • International Group Happenings – The VCFS 22q11 Foundation Australia has been busy updating our website lately www.vcfs22q.org.au. We have changed the format to include local information for each state. These tabs include links to services and government assistance. We have also included and international tab, so if you have anything you want included please email president@vcfs22q.org.au.
  • The 9th Biennial International 22q11.2 Syndrome Meeting will take place in Palma de Mallorca, Balearic Islands, Spain from Thursday June 19th to Sunday June 22nd. The venue is the Meeting Center of the Hotel Meliá Palas Atenea, located on the Paseo Marítimo of Palma, the seaside main boulevard of the city with an enormous choice of cafes and restaurants, and, (of course!) magnificent views to the Mediterranean. For More Information * To Submit an Abstract * To Register Online * To Make a Reservation * Please Visit www.22q11mallorca.com.
  • Philadelphia Rock ‘n’ Roll Half Marathon – The International 22q11.2 Foundation, Inc. – 22K for 22q is an official charity partner for the Rock ‘n’ Roll Philadelphia Half Marathon. This event takes place on Sunday, September 21, 2014 in Philadelphia.
  • Newborn Screening Campaign – In April, 2013, The International 22q11.2 Foundation sent a representative to the British Parliament to partake in an impressive and inspiring event hosted by Max Appeal. Donna McDonald-McGinn, CGC presented a compelling argument for newborn screening and was quoted in the British newspapers.
  • Same Name Campaign – Because of the way our understanding of the 22q11.2 deletion evolved, several different names continue to be used for what we now know to be the same condition. These older terms include DiGeorge syndrome (DGS), velo-cardio-facial syndrome (VCFS), conotruncal anomaly face syndrome (CTAF), Opitz G/BBB syndrome, and Cayler cardiofacial syndrome. Unfortunately, having a syndrome that is called by several different names can lead to negative consequences, not to mention the general confusion it creates among parents and professionals The Foundation launched the Same Name Campaign, an educational effort aimed at professionals and families, with the goal of establishing consistent terminology for the 22q11.2 deletion syndrome. The Foundation will of course continue to link our website to all related groups indefinitely, regardless of what name they choose to use for this condition, to make sure that anyone searching for information has the best chance of locating it.
  • 22q Orlando Conference Special  Newsletter
  • Spring 2012 Newsletter
  • 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 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.
  • The 7th annual, awareness-raising 22q Calendar waits for our family’s best photos. The 2013 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.
  • Summer 2011 Newsletter
  • Fall 2011 Newsletter
  • 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 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 1st 22q at the Zoo Worldwide Awareness Day is held on April 22 to 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.
  • Summer 2010 Newsletter
  • Fall 2010 Newsletter
  • Winter 2010 Newsletter
  • 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 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.
  • 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 Conference scheduled for July 6 -10, 2012 on the Disney property in Orlando, Florida, USA.
  • We produce our 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 the Same 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 annual Stock Market Contest is 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.
  • Summer 2009 Newsletter
  • 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.
  • Fall 2008 Newsletter
  • 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.

 

  • 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 4th Stock 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.

 

 

  • 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 for Victory 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 Medical Research 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 initiate Clinical 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.

 

  • 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.
  • 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.

 

  • 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.

 

Also in about the foundation