Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Please forgive the length of this message, but the information is very important. In the past 4 years we have provided information and support to over 500 families, physicians, students, teachers, therapists and other professionals. During this time we have seeked out this information during countless hours on the computer and telephone. Before we began IMDSA there was very little information on MDS and very few people knew it existed. Now, because of our continuous volunteer hours, we have contacted researchers to have studies done so we can provide more information on MDS. We have contacted small countries where MDS was never even heard of and now is being diagnosed through guidelines we have sent to these areas. We have contacted genetic counselors to teach them how to recognize MDS and have spoken to them on personal cases of families touched by MDS. We have educated students of genetics, education, OT, ST, and PT through our conference sitter program, as well as, taking time to visit with them and answer their questions. And, we have spoken to countless families who were afraid and felt very alone because they had just received the diagnosis of MDS for their child or grandchild and their doctors were unable to give them any information on it. And, without IMDSA, they never would have received that support and information they needed to help them raise their child. In 1988, my son, Tim, was diagnosed with MDS. The doctors said this is what he has and we have no information on it, sorry….good luck! I wanted more than anything to connect with families who were going through the same things that I was. I wanted information desperately, so I would know if things that were happening with Tim were typical. I hated that the doctors had no information on MDS and I felt as though I was horribly alone in raising him because he wasn't accepted in the Ds community and he wasn't accepted in the typical community and there was no one in my area who had a child with MDS. Then, later, as years passed, I learned on my own what was best for Tim in raising him and when I realized how wonderfully he was doing and how well he was succeeding, I wanted to be able to tell others that the diagnosis of MDS is NOT the end of the world! That children with MDS can become successful adults! And, I wanted to provide support, information and research, so that families would not have the same experiences that I had in 1988. I realize that many of you think that the Mosaic Down syndrome e- group is what IMDSA is all about. And, that is a big part of how we provide support and information to you. For the past 5 years I have researched and studied everything there is to know about MDS. This way, when you have a question, I can usually answer it. When there are times that I can not answer a question, I immediately go to one of our Advisory Board members to be sure that all of your questions are answered correctly. But, that is not the only thing that we do! We write a quarterly newsletter. This takes many hours to complete and then more hours to get it in PDF form and sent to all of our members. We have scheduled Ask the Expert meetings. This takes lots of time talking with the experts and working around their schedules to get them online to answer questions to our members. Most professionals require a fee to answer questions in this format, so we have to talk the experts into meeting with you free of charge. Then, we put that meeting on our site so everyone can get those answers they need. We send out information packets. First, we had to gather that information. A lot of it, I wrote myself, because there isn't enough information out there. Do you know we are the ONLY organization who recognizes MTDS? Do a search online; we are the only ones you will find. We have to print this material and then mail it. Most printing is done now on our personal computers because we no longer have our free printing service, and we can't afford the cost of printing. Our web site is visited by approximately 65 new people a day. Our secretary pays for this site out of her own pocket, so IMDSA can focus its funds in other places. We have a conference. Last year, we spent almost every waking hour for over 6 months preparing for our 2005 conference. It took a lot of time and it took a lot of money. This is why we have decided to wait until next year to do another one. We just recently obtained a toll free number. Since our new number, we have helped a great number of people including a US Army officer in South America who we were able to connect with doctors and researchers to go out and study a cluster of 200 individuals with Ds in the same community. These are just a few of the things that we do! There is no way to list them all, but in every volunteer hour spent, we have come one step closer to learning and teaching more about MDS. And, in the long run, this all benefits You and your family. Last week, you received an email from our Vice President, Easterly. Some of you may have read it; some of you may have not. She briefly explained what we are doing at IMDSA to benefit you and also told you about our 2006 budget of $1500 for operational costs. She explained to you that we are an all-volunteer organization. None of our board members, including myself, get paid for what we do. We just do it to help all of you. She sent you a plea for donations to IMDSA to help continue the efforts and help us reach our goals. Because our goals are for you and your family. But now, it is time for me to be blunt. Professionally, I am not a very blunt person. But, because this affects you and your family, I feel that I am responsible to let you know exactly where we stand. Currently, we are way under our budget amount. If we do not get an increase in membership and donations, our organization may have to come to a close. This would mean that you would no longer receive the benefits of IMDSA. You wouldn't have the support that IMDSA provides. You wouldn't have the conferences that we carefully plan to meet the needs of each of our families at a very affordable price (NDSC and NDSS are more than double what we charge and do not recognize MDS in their conferences). You wouldn't have the research that provides you with the information on MDS, because the researchers come to IMDSA for participants. You wouldn't have the BI-monthly Ask the Expert meetings where you can talk with experts from the comfort of your own home. You wouldn't have our quarterly newsletter MOSAIC WORLD that gives you great information and inspirations. And, you wouldn't have our information packet or web site to refer to for information. With all this said, if you are not a member of IMDSA, it only costs $25 USD a year to join. http://www.imdsa.com/reg.htm. Please join! We would love to offer you all the benefits of IMDSA! If you are a member, maybe you have an extra $10 you would like to donate to help us continue our cause. As had said in her previous email, if you do not want all of the benefits, we will honor any donation of $10 or more with our quarterly newsletter MOSAIC WORLD. We have all worked very hard to bring IMDSA to this point. We are increasingly becoming a recognized organization in the genetic world. I would hate for us to have to quit at this point, but seriously, we will have to stop providing this information if we do not get more funds to do it. I appreciate your continued support and hope that together we can continue to provide information throughout the world, so one day, MDS is known everywhere and all families will have information readily available to them and know that they are not alone! Kristy Colvin IMDSA President IMDSA PO Box 1052 lin,TX 77856 USA 1-888-MDS-LINK www.imdsa.com UNITING UNIQUE PEOPLE IN A UNIQUE WORLD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Thank you for your kind words. I am so glad that we are able to provide these services to you and your family! Kristy Colvin IMDSA President JESSICAJEM1977@... wrote: In a message dated 2/20/2006 4:09:05 PM Eastern Standard Time, imdsapresident@... writes: www.imdsa.com I dont know what I would do without this site. Thank you for all your hard work. I just joined and I should of done it sooner. It was fast and simple. Keep up the good work, I am grateful for yor services. and ( MTDS 5 months old ) Quote Link to comment Share on other sites More sharing options...
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