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Summer 2008 a Quarterly Newsletter for Families and Friends Vol CHARGE Accounts Summer 2008 A Quarterly Newsletter for Families and Friends Vol. 18 No. 2 CHARGE Syndrome: CHARGE has four major features - SPECIAL ISSUE CELEBRATING Coloboma, Choanal atresia, Cranial nerve abnormalities,and Characteristic ears i i i i i i More information on website CHARGE Syndrome CHARGE SYNDROME i i i i FOUNDATION, INC. Foundation’s BOARD OF DIRECTORS i i i i i i President: Neal Stanger 15th Anniversary Vice-President: James Thelin Secretary: Lisa Weir Treasurer: John Wynne 1993 - 2008 Directors:- Lacey Friedman Donna Lacey - Matt Murray Marilyn Ogan - Pamela Ryan Brownie Shott - Lori Swanson i i i i SPECIAL ADVISORS 18th Year i TO THE BOARD i Meg Hefner i i of i i Kathy McNulty CHARGE Accounts EXECUTIVE DIRECTOR Marion A. Norbury ADMINISTRATIVE ASSISTANT Lori Bookstaver i i i i EDITORIAL STAFF Marion A. Norbury i i Meg Hefner, M.S. Marion Norbury’s i i 75th i i CORRESPONDENCE & MAILING Marion A. Norbury Birthday 2004 Parkade Blvd Columbia, MO 65202 1-573-499-4694 (voice/fax) 1-800-442-7604 [email protected] In this Issue . ANNUAL MEMBERSHIP Calendar....................... 11 Fundraising Account Family $15 Conference Account Fundraising in a Box .........11 Professionals $20 Program Plans................. 10 The Hearts Project...........12 Organizations, Institutions, & Libraries $30 Foundation Account Order Form/Resources ...... Insert Marie Patterson Is Honored ........13 Special Account WEBSITE Personal Note .................. 9 Birthday Greetings ...........8 www.chargesyndrome.org No CHARGE Corner ............ 9 CHARGE Foundation Story ....2 Some of Lacey’s Favorite Books . 13 Milestones..................3 © All rights reserved CHARGE Syndrome Foundation Inc. Thank You’s.................14 2008 ! ! ! Deadline for the Fall Issue - September 8 ! ! ! The CHARGE SYNDROME FOUNDATION’S STORY Marion is 75, CHARGE Syndrome Foundation is 15 Meg Hefner This issue of CHARGE Accounts is a celebration of major milestones for the Foundation and one of it’s founders. We have notes from Neal Stanger, Foundation President, Jim Thelin, who was in on all of this from the beginning and Marion herself. I mostly just pulled this stuff together and found some photos to go with it. Since the beginning of CHARGE Accounts, I have been an editor. For the early issues, I gathered the professional information and helped Marion pull together and edit the family Personal Accounts. It was truly a joint effort. As I got busier with “day job” and family, Marion took over more and more. These days, I still edit, but it’s more proofreading than pulling it all together. This issue I am again pulling much of it together. One thing I noticed in reading the accounts from Neal, Jim and Marion, is that each has their own memory of who came up with ideas and how they were carried out. And my version would be different yet again. I was quite amused by this, and decided to leave many of the discrepancies in. When we do an official History of the Foundation, we will go back to the records and argue with one another about which version is closer to the actual events. I noticed Jim left out the part about my making him proofread the booklet as he lay in a hospital bed, recovering from broken ribs! It was a sledding accident and a wonderful thing, as it got him to quit smoking. He wasn’t doing anything else – why not some light reading? It is really hard to get across the significance of Marion’s involvement. At first, she offered her house as the mailing address for inquiries about the booklet and helped coordinate the printing and mailing (we mailed one to every genetic counselor in the country back then). Back in those days, she knew a lot about hearing loss, but not about CHARGE. Fortunately for us, she really did not know what she was getting herself, her house and her husband in to. If we had told her it would take over an entire room of her home, many hours on the phone every week, a full mailbox, and on and on, I doubt she would have agreed. And she just happened to have a husband who was knowledgeable about non-profits from his work with Kiwanis, Habitat for Humanity and having worked for the IRS. The Foundation would not have happened without Lee’s help, too. But the CHARGE families are just so wonderful – the stories, the phone calls, the letters – they are so wonderful that we all just got sucked right in and went along for the ride! Somehow we don’t mind this adventure taking up so much of our time and energy. You all make it worthwhile. Marion, Jim and I all thank you for making this a wonderful journey. Marion, Jim and Sandy 1995 Portland Conference Meg, Marion, and Sandy 1995 Portland Conference p. 2 CHARGE Accounts Summer 2008 The CHARGE SYNDROME FOUNDATION’S STORY A FEW OF THE MAJOR MILESTONES 1987 - CHARGE Syndrome: A booklet for Families is published 1988 – CHARGE Questionnaire was developed to determine needs of families 1989 - First issue of CHARGE Accounts is published 1993 - The CHARGE Syndrome Foundation, Inc. is established in Columbia, Missouri First International CHARGE Syndrome Conference in St. Louis, Missouri (220 people) 1994 - A toll-free telephone number is available 1995 - Second International CHARGE Syndrome Conference in Portland, Oregon (300 people) This conference included a clinic, from which the revised diagnostic criteria originated 1997 - Third International CHARGE Syndrome Conference in Boston, Massachusetts (350 people) Expansion of the Board to 12 members 1999 - Fourth International CHARGE Syndrome Conference in Houston, Texas (400 people) CHARGE Syndrome: A Management Manual for Parents - Part 1 is published Marion Norbury becomes the Foundation’s Executive Director The Lee E. Norbury Memorial Scholarship Fund is established The first Stars in CHARGE Awards are presented The CHARGE Syndrome website is established 2001 - Fifth International CHARGE Syndrome Conference in Indianapolis, Indiana (500 people) Part 2 (Developmental sections) of the Manual is published Spanish Version of Manual - Part 1 is published First CHARGE Syndrome Awareness Week 2002 - Spanish Version of Manual - Part 2 is published New Parent Folder 2003 - 10th Anniversary of the Foundation 1993-2003 Sixth International CHARGE Syndrome Conference in Cleveland, Ohio (500 people) Second CHARGE Syndrome Awareness Week Translation of the Manual into Japanese 2004 -CHD7, the CHARGE gene, is identified by researchers in the Netherlands. They contacted the Foundation with the news before it was published. 2005 - Seventh International CHARGE Syndrome Conference in Miami Beach, Florida (540 people) Website is upgraded and updated 2007 - Eighth International CHARGE Syndrome Conference in Costa Mesa, California (625 people) 2008 - 15th Anniversary of the Foundation 1993-2008 Professional Packet of Information Summer 2008 CHARGE Accounts p. 3 The CHARGE SYNDROME FOUNDATION’S STORY President’s Note Neal Stanger It seems as if I just left California last month off the high working in the office with Marion as a volunteer for the of what I feel was our best conference yet. I still can’t believe Foundation; she has always been ready to give a hug when it was a full year ago already. Now I look one year ahead to Marion needed one and she also gave her opinions to Marion our next conference in Bloomingdale, Illinois. How do we top whether they were asked for or not. Marion started collecting that last one? I’ll tell you how! We have Brownie Shott information about CHARGE syndrome in 1983 under a small chairing the conference. We have Jim Thelin doing the grant from the Quota Club. When that funding ran out, she program. We are strongly considering adding another day to kept doing the work out of her house anyway. In the late 80’s the conference for professionals on Thursday, July 23rd. We and early 90’s Marion had a vision of putting together a small are most probably going to have our 1st golf outing on outing in St Louis for family members to get together. As you Wednesday, July 22nd. We have the Texas CHARGE Family are all aware now, this turned into the First International support group running our Saturday evening entertainment CHARGE Syndrome Conference in 1993 with more than 200 (and you WILL be entertained. I just can’t tell you how yet). people present. It was such a success that the foundation has We will have a wonderful, professional day care system set up been doing it every 2 years since. On a personal note, I am for the kids, along with a miniature golf tournament on the glad Marion is there pushing me as a Board member to do grounds. There will be many more things going on as well; more and more every year. I have known Marion for about 13 check the website often for more info on the conference and years and my respect for her continues to grow annually. I promise you that you will not be disappointed. Now let me tell you about some exciting things that the Now that I teased you with a little bit about 2009, you Board has done since you saw us last. We had a Board should know that I am busy with a site selection committee to meeting in Bloomingdale, IL in April, where we had a choose our location for 2011. We are looking at many east strategic planner come in to work with our full Board, coast locations for this conference, and we are already starting employees and special advisors. We had a full weekend (30+ to look at west coast locations again for 2013. hours of meetings over two days) where we all worked with you in mind to become a greater Foundation and a smoother As you know in this issue we are celebrating Marion running corporation and I would like to thank Kathy McNulty Norbury, but I feel we also need to celebrate the power behind of NCDB for arranging this for us.
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