Report of President, Stephanie St-Pierre
From June 27th to 30th, 2004, hundreds of parents, children and professionals, came together in San Antonio Texas for the first ever World Congress on Chromosome Abnormalities. From the perspective of a parent, I was overwhelmed with the emotional connection felt with those who attended. Meeting so many beautiful children, and hearing the stories of the families was simply amazing. From the perspective of someone who runs a parent group, my head is still buzzing with a million ideas, prompted by the coming together of so many others with vast pockets of knowledge. The plans and dreams I have for C22C are far too numerous to mention!
One of the highlights of the conference for me (and there were SOOO many) was a presentation by photographer Rick Guidotti - http://www.rickguidotti.com - of Positive Exposure. This inspirational man, a former fashion photographer, left the likes of Vogue and Cosmo behind him to focus on promoting the beauty found in people everywhere with difference. He brought me and others to tears, as he emphasized that there is beauty everywhere, not just in those society decides are the "perfect ones". He took photos of many of the children, including some of our members. Thank you, Rick, for being such an amazing and inspiring person.
At this conference, Dr. Beverly Emanuel and Donna McDonald McGinn, M.S., CGC, who are professional advisors for C22C, gave presentations. Dr. Emanuel covered Mechanisms of Genomic Disease, which included the 22q11.2 deletion and 11/22 translocation among others, and Donna presented an excellent overview of the disorders of Chromosome 22. I am indebted to these two amazing people, who gave of themselves so freely to many of the parents filled with questions. It is people such as these, who help change the very unfortunate negative and unsupportive experiences many of our group members have faced in the medical world, as they search for information and answers that they need to help their very special children. No longer should we have to hear from professionals, "We have no information, there is nothing we can do," for we know that is simply not true. The dreams of every person at the conference is for all parents with a newly diagnosed child to have access to immediate information on their child's disorder, in easy to understand terms, access to immediate support of other families, and what all parents dream of, hope. Thank you Beverly and Donna for giving us that hope, you are honestly two of the most supportive and giving women I have ever known and I am honoured to know you both and grateful beyond belief for what you do for our families.
Thank you seems such an inadequate word to the organizers of the World Congress. To Gloria Ellwanger, Claudia Traa, Linda Koehler, thank you for your tireless efforts, and to so many of the other organizers who made this all happen. And above all, to Dr. Carey, Dr. Hale and mostly, Dr. Jannine Cody, whom I have the utmost respect for, as a parent and professional for what she has accomplished, who had the vision to hold the bar higher, bring us all together, and give us the opportunity to share, learn and grow. Thank you from the bottom of my heart for making this opportunity available to C22C. I am forever grateful.
And more than anything, I would like to thank all the families who came from so far, and offered so much support to our group. This is what C22C is all about.
To our Speaker/Room hosts, Carl, Sarah, Lisa and Murney, thanks for a great job! To Tina, Dave, Chris, Cassie and Cameron, thank you for joining us and offering to become California representatives for C22C!
To the newest members of the C22C family, Susan and Ted, what a wonderful surprise to find a new family to share with, I hope I get to meet Margaret one day!
To Liana and Takoda, I wished I could have spent more time with you, Takoda is a sweetheart!
To Jackie, thank you for making the trip - it was awesome to get to know you and maybe next time we can bring our children face to face.
To Marla and Greg, thank you for bringing your sweet children Jaime and Matthew, who are so charming and wonderful. I loved seeing you all again.
To Linda and daughter Anna, the only other Canadian group members to attend, from my former province of Alberta, it was awesome to connect. You are both so warm and wonderful.
To Isabel and Nikki - I am so grateful I had the privilege to meet you both, Nikki is a beautiful young lady.
To James and Jayme, it was a pleasure to meet you both, and I know we will be seeing more of you now. Please keep me up to date....
To Elizabeth and Trey, I was so happy to get to meet both of you and Jacob.
To Yamile, who I share such a connection with, I love you like a sister...., thanks for coming along Yesenia!
To Patty, Leslie and Shelly, for joining us again - I loved seeing you!
To the Patch family, James, Betty, Anastasia and Sarah, who will be planning our 2005 conference near/around Boston Massachusetts in conjunction with Lisa Clewes, our rockin' fundraiser extraordinaire (I love you guys and cannot thank you enough)
To Carl, for the extra special treats to me and unwavering financial support he gives to C22C.
To Nikki and Wright - one of the cutest little guys! Nikki, I am so fortunate to have met you, I think you and I might be seeing a bit more of each other in the future - you are a terrific lady!
To Judith, thank you for joining us, it was lovely to get to know you.
To Lisa H., I was so happy to get to see you again! Thanks for coming!
To Meredith and Gib, you know I love you like family...thanks for all your support and inspiration....
...and more than anyone, to Murney, my crutch and co-president, I am so incredibly privileged to know you and grateful to have you by my side in this organization. I couldn't do this without you.
And a note to the sweet mom I met for the first time from San Antonio with the boy with 22q11 del - I have misplaced your contact information and name (I'm so sorry!!). Please contact me so that I can send you your video and newsletter!
To everyone else who was unable to come - there are plans to possibly hold another World Congress in 4 or 5 years from now, and as I mentioned, our Family Conference will be held in/near Boston next summer. More details will be provided as I learn more. The World Congress was more than I ever imagined it would be, and I felt overwhelmed with emotion so many times. I have been working on building this group for the past 8 years, and I hope that when the next Congress arrives, our group will be able to participate again, and possibly be able to help fund it in some way.
The one thing I learned from this conference is that money is difficult to obtain, and if we as parents want things to change in the world so that our children can have the best opportunities and to be all that they can be, we are going to have to do it ourselves. We need to raise money to be able to help support such conferences, to be able to offer immediate support and information to parents, to educate the doctors who treat our children, because they can only do and know so much - it is the parents that need to make this happen.
We are our children's voices. We need to make those voices loud and clear around the world - to join in numbers to help the researchers who work tirelessly to understand and decipher the mysteries held within our children, and to be the best advocates we can be. One day, and I hope I live to see it, no parent will leave a doctors office with more questions than answers.
I extend a request to all families who read this - to join us and help us achieve our dream. If you know people who are not members, encourage them to join. There is strength and power in numbers. If many people do even just a little bit to help, we can achieve our goals. I believe with all my heart that we all can make a difference.
Stephanie St-Pierre, President, C22C
and most importantly, mother to Maia, age 9, Emanuel Syndrome.
PLEASE VISIT OUR PHOTO GALLERY FROM THE CONFERENCE
World Congress on Chromosome Abnormalities Website
Chromosome 22 Central Homepage