That number includes:			Country of Origin:
•	182	adults	•	87	United States
•	48	grandparents	•	7	Canada
•	172	children	•	2	Denmark
•	99	diagnosed children	•	1	Australia
			•	1	Germany
			•	1	Ireland
			•	1	United Kingdom
• Ohio had the largest number of families attending with eight, followed by California and Florida with seven each. Georgia sent five families and four states sent four families.

Celebrating its 4^th Anniversary this year, the 22q13 Deletion Syndrome Conference offered skill building and networking opportunities for medical professionals and parent advocates alike. Our Conference Planning Program Committee organized around 5 key workshop paths: medical, research, fundraising, legal and educational. Attendees could follow one specific conference path or create their own schedule with workshops from different tracks. Our mission: serving our family membership by providing an opportunity for scientific education and informational exchange.

The conference started off Friday morning (Thursday evening for newbies), with an Informal Family Welcome. Parents had the option of using child-care services throughout the weekend in order to concentrate on conference meetings. Saturday and Sunday, July 21-22^th the conference topics discussed pertained to issues such as chromosome studies, clinical characterisics, molecular overview, communication, medical research, toiliet training, educational advocacy, fundraising and sensory processing.

Throughout the conference, families had the opportunity to take breaks and socialize over lunch and dinner. Saturday evening, parents and children were once again reunited to eat dinner and indulge in a family baseball event. Sunday morning opened with a Faith Sharing gathering followed by a general session discussing business, updates and conference planning for 2008.

THANK YOUS ARE IN ORDER!
On behalf of the 22q13 Deletion Syndrome Foundation, we would like to thank everyone for making the 2006 Conference in Greenville, SC a huge success! So many people contributed to turn this event into a smooth running meeting with many very interesting presentations and family oriented atmosphere for discussion and networking. With your insightful feedback and comments, we look forward to continued improvements in 2008. It was extremely gratifying to see the "original families" giving of their wisdom to the benefit of the newcomers.

To our Sponsors:

We would like to thank the Greenwood Genetic Center. Your sponsorship and contributions made this event possible. Your continued support and dedication to the research of the Phelan McDermid Syndrome/22q13 Deletion Syndrome has been invaluable. We gratefully acknowledge the significant monetary aid of the Mikel Foundation and Bill & Carol Danielson. They have been with us since the beginning and have helped us flourish. We also wish to thank the Md7 Corporation in San Diego, CA, K.C. Tools in Shawnee, KS and A-1 Toyota in New Haven, CT for their significantly generous support.

Last but not least, we thank the families, individuals and businesses that have contributed through donations and purchasing of our tote bags, T-shirts and other 22q13 Deletion Syndrome accouterments. You have helped improve the lives of all those effected. We trust that the conference was as fulfilling for you as it was for us. Once again, thank you all for your support and we hope to see you all at the next biennial conference!

To our Invited Doctors & Speakers:

Again, thank you… you selflessly gave of your time to share ideas, best practices and experience. Your time and passion are most valued. We especially would like to show our appreciation to Dr. Katy Phelan for organizing the first Support Group Meeting years past and continued dedication to our families. You are an inspiration. We thank Dr. Robert A. Saul for his participation, direction and medical advice. We also thank, Dr. R. Curtis Rogers, who has donated his time at every conference and continues to be an active Board Member. Dr. Mike Friez deserves a thank you for his time and detailed, yet comprehensive medical and research information for our families. To Gail Stapleton, for being such a tireless helper with organizing the childcare and many behind the scene details. Also, thank you Dr. Steve Shaw for undertaking such an exhaustive study of our children and continuing your efforts with interviewing more families in the name of research.

A concerted indebtedness and thanks to all the speakers that embraced our families. We thank Sue Lomas (President, Board Member), for welcoming all of us and making us feel at home. Nick Assendelft (Vice-President, Board Member), for writing and maintaining the 22q13 Deletion UPDATE Newsletter and enlightening us with his jocular personality and making us laugh. Judith Coucouvanis, MA, APRN, BC. For 30 years, she has specialized in the treatment of children with developmental disabilities. Thank you for sharing your expertise on your insightful toilet training techniques. We also thank, Debra Deshur, Mom to “Ali”, for her role in presenting her profoundly exceptional communication lectures, past and present. Rory Jones (Secretary), thank you for continuing your leadership role with the heartfelt "Dads to Dads" session. Randy Riddle (Research Committee, Board Member), thank you for maintaining the indispensable Yahoo Support Group and organizing the Faith Sharing portion of the conference. An additional thank you to Rick Wood (parent and attorney) for his continued legal assistance and discussion concerning "Guardianship, Conservator and Special Needs Provisions." This difficult topic was handled beautifully. Last but not least, thank you Marty Zonca, OTR for your in depth discussion on sensory processing and how it relates to our children.

The feedback has been extremely encouraging and many people commented that they came away with new knowledge and a renewed sense of conviction in advocating for their children both medically and educationally. Congratulations! You have re-energized all of our families and we could not have done it without you!

To the Embassy Suites Hotel Greenville Golf Resort & Conference Center:

What a wonderful venue! Beautiful and stunning grounds with exceptional facilities to showcase our proud sponsors and speakers and a hustling family audience brimming with questions and learnings, and a staff that went out of their way. Thank you once again, for accommodating us and going that “extra mile” to make this an event to remember.

To all of the "Behind the Scenes" Helpers:

Without your assistance - be it in the organization, assisting at the 22q13 item table, manning the boxed lunches, childcare volunteers, or the greeters at registration - the event would not have been as complete, fulfilling or successful without you. A thanks goes out to Amelia Woo for her help with the "Sibling Sessions." There were many "unsung heroes," but believe us, we truly appreciated all of your hard work. A big round of applause to the Elizabeth DeRosa for designing and presenting such a professional and beautiful Foundation Brochure, Diana Lockaby-Cotter for designing and maintaining our new website and Trey Homan, once again for doing such a wonderful job with the family directory. We also deeply appreciate the fundraising efforts of Kurt & Denise Koester and its profound impact on the Foundation.

Final Thanks:

We would like to give particular acknowledgment to the following people for donating their time and expertise to conference planning. It is with their dedication that helped make this conference a success and has allowed the Phelan-McDermid Support Group to grow: Sue & Rich Lomas, Nick & Ruth Assendelft, Vicki Camarillo, Eric & Amy Youngquist, Gail Stapleton, Dr. Katy Phelan, Randy Riddle, Rory & Judy Jones, Veronica Frunzi, Sheila Huggins, Kurt & Denise Koester, Elizabeth DeRosa, Trey Homan, Patrick & Diana Lockaby-Cotter, Debra Deshur, Rick Wood, Vicki Guidry, Sheryl Mowrey, Dan & Cindy Currell, Doug Bramson, Luis & Joey Pedraza, Susan Jackson, and Leah Gehling of Helms Briscoe.

Special recognition and congratulations are extended to Penny Walker for all of her efforts in branching out and hosting the 1^st 22q13 Deletion Syndrome Conference in her homeland of Australia, this past July! We also welcome her as a new member onto the Board of Directors.

Everyone's efforts, no matter how unglamorous, were instrumental in making this conference possible. Your hard work oiled the wheels each day and your support was essential and very much appreciated: thank you. Not only are we grateful for the help of those whose roles were pre-arranged, but also we are particularly appreciative of those of you who, unasked, just pitched in and helped wherever you saw a need.

We trust you enjoyed the conference and look forward to providing another enjoyable symposium in the summer of 2008.

Sincerely,
The 22q13 Deletion Foundation Family


Archived 2006 Conference Agenda