MOSAIC MOMENTS

As you all know I have been crazy busy planning for our upcoming conference! I wanted to give y’all some important info so you don’t miss out. 

First of all, Next Friday, June 19th is the deadline for reserving your hotel room. We got a great room block at the Sheraton Cincinnati North Hotel & Indoor Water Resort. It is only $105 per night and for $12 per person you can enter the water park. You can book your hotel by going to our website. 

The conference registration deadline is Friday, June 26. After this, the fees will increase. You can register at our website.

Finally, please see below our press release. If you have a blog or an email list, please post this information for others to see. We are very excited to bring this to everyone and we would hate for anyone who would benefit from this conference to miss out!

See you in just a couple of weeks in Cincinnati!!

 
Keynote Speaker Congresswoman Cathy McMorris Rogers with husband and newborn son w/DS,  Cole

FOR IMMEDIATE RELEASE-June 11, 2009

Parents of children with Down syndrome (DS) are universally concerned about the wellbeing of their child’s health, future, and ability to connect with other DS families.  The Down Syndrome Association of Greater Cincinnati (DSAGC) hosts “Building Bridges for Down Syndrome”: the fourth biennial research and awareness conference presented by the International Mosaic Down Syndrome Association (IMDSA).

The term Down syndrome (DS) was named after Dr. Langdon Down, a British doctor who first described the condition in 1887.  This year marks the 50^th Anniversary of the discovery of the extra 21^st chromosome that causes Down syndrome.  DS is a genetic condition that occurs in one in every eight-hundred (800) births.  There are four types of Down syndrome:  Trisomy-21, Translocation, Mosaic, and Mosaic-Translocation. 

The Down syndrome community has leapt many hurdles in paving the way for future generations, but there is still a lot of work to do.  The attendees of this biennial research and awareness conference are empowered with information, hope for the future of all individuals with DS, and are given the opportunity to participate in various research studies being conducted onsite during the conference.  Teens and adults with DS, along with their siblings, will learn everything from how to manage a budget to relationships and friendships in the “Teen and Adult Conference.”  Children ages 2-12 with DS along with their siblings, will learn a variety of subjects: Acting and Puppetry to Bullying to Stranger Danger in the “Kid Konference.”  Students interested in professional careers pertaining to DS will supervise these youngsters; giving them a better understanding of what DS really means for these individuals.  Together, families and professionals will enjoy the “Friday Night Family Reunion & Silent Auction” with entertainment from The Amazing Portable Circus and self-advocates Sujeet Desai, Tim Colvin, and Casey Morton.

Some attendees of the 2007 conference held in Richmond, VA said, “At the IMDSA’s Conference, there’s a sense of family the moment you step through the doors, everyone is welcoming.  I’ve learned so many things from all the speakers!” 

Join IMDSA and DSAGC Friday, July 10 through Sunday, July 12 at the Sheraton Cincinnati North Hotel and Indoor Water Resort in Sharonville, Ohio for a fully scheduled weekend of information, family fun, socialization, and entertainment by Sujeet Desai, Dan Kulp, Tim Colvin, and Casey Morton.  Over 30 experts will discuss various topics that will beneficial to the betterment of all families of children and adults with DS.  This is a life-span conference with topics pertaining to all ages of people with DS.  Researchers and professionals will also benefit greatly by attending.  There will be many great activities, workshops, and sharing of information.  A sure highlight of the weekend will be the “Family Awards and Celebration Banquet and Dance” with self-advocate Jennifer Katz and comedian/musician Dan Kulp. 

Reservations are filling fast and space is limited, so register and reserve your spot today!  For more information on how to register, visit www.imdsa.org

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The International Mosaic Down Syndrome Association (IMDSA) provides support, information, and research to any family, individual, or professional whose life has been affected by mosaic Down syndrome. Its Research & Awareness Conference provides support, information and research to all forms of Down syndrome.

Contact:

Kristy Colvin

IMDSA President

Email: president@imdsa.org

Toll free:  1-888-MDS-LINK

Web:  www.imdsa.org

It is hard to believe that we have been planning for our Down Syndrome Research & Awareness Conference  for ten months now! No wonder I am so tired!

On April 1, 2009, the conference registration prices will go up. Not considerably so, but this is our early registration deadline and the price will change. 

Many ask, how much it cost to attend the conference.  Well, it depends on how many you have coming with you!

If you register before March 31 and you are a member of IMDSA, the registration for the main conference is less expensive than those who are not members. However, you can become a member for only $25 and this will give you a free subscription to our quarterly newsletter MOSAIC WORLD that is packed with information pertaining to not only mosaic Down syndrome but also Down syndrome. These articles are all very helpful in raising your child no matter how old or young they are. You also will receive discounts such as this and our information packet full of info and inspiration. If you wish to become a member, even for the discount, that is ok with us! You can click here for more details. 

To register, click here for details.

We realize that many people are struggling right now to make ends meet and we want more than anything for you to be able to attend this conference! We are, doing all we can to help make it as easy and affordable as possible.  To make this easier, we have compiled a list of possible organizations that may help you attend the conference. Don’t be shy about this! Many organizations have funds set aside to help you attend conferences such as ours! So, please utilize this list!

IMDSA is offering two (2) conference scholarships to IMDSA members. Please click here for more details.

DSAGC is offering scholarships to families in their immediate area to attend this conference. Please click here for more details.

There are many organizations that have funds set aside to help families like yours attend conferences that will enhance your parenting to your child with special needs. If you live within the United States of America please click these agencies below and ask them if they have financial assistance available to help your family attend this conference.

Down Syndrome Associations

The Lion’s Club

The ARC

United Way

Developmental Disabilities Council

Yellow Pages for Kids

If you live outside of the United States and have a current VISA or Passport contact the following organizations and ask them if they have financial assistance available to help your family attend this conference.

Down Syndrome Associations

The Lion’s Club

United Way

If you have not yet seen our presenter list you can click here for that.

I am very excited about our upcoming conference and I do hope that I can meet all of you there! If you have any questions, just ask!

Yesterday I tried to give you our presenter list for our Down Syndrome Research & Awareness Conference. Unfortunately, it just was not working out for me! Finally, I have held my mouth right apparently because this time it worked! Below is our list of our presenters for the Main Conference which will be on July 11-12. This does not include July 10 with our research appointments, Family Reunion, and Silent Auction. However, on that same day we are having a workshop for all DSA Board Members to share ideas and currently we are working on that and would be very interested in hearing ideas from DSA Board Members on what they need the most. This also does not include the list for our Youth Conference or Kid Konference. Hopefully we will have that soon. 

As you look at this list, you will see that we very carefully planned for this conference to ensure that most every topic pertaining to Down syndrome no matter what age, is discussed. If you need financial assistance, please email Becky@imdsa.org and she will be happy to help you!

Early Registration deadline is March 31st (after that the price will go up) So, if you haven’t yet registered please go here and you can get even more details and reserve your hotel as well.

                                  Speaker                                                       Topic

Joan Dostal is an OTR/L- Pediatric Clinical Specialist and has been practicing Occupational Therapy for 30 years and is a specialist in Sensory Integration.  She was one of the founding owners of the Cincinnati Occupational Therapy Institute and and is currently the Vice President of the Cincinnati Occupational Therapy Foundation.

Children with Down syndrome can sometimes experience a variety of sensory issues. Sensory Integration disorder is a neurological disorder that happens when the brain can not process the five basic sensory systems. (sight, sound, smell, touch, taste) I am sure that many parents have found that their child freaks out when there is a different piece of clothing because it feels different, or has trouble with different textures when eating or touching things. 

According to the Sensory Integration International (SII), these are some of the signs found in Sensory Integration Disorder:

• Over sensitivity to touch, movement, sights or sounds
• Under reactivity to touch, movement, sights or sounds
• Specific learning difficulties /delays in academic achievement
•  Tendency to be easily distracted / Limited attention control
• Difficulty in making transitions from one situation to another
• Activity level that is unusually high or unusually lo
• Social and/or emotional problems
• Difficulty learning new movements
• Delays in speech, language, or motor skills
• Physical clumsiness or apparent carelessness
• Impulsive, lacking in self-control
• Inability to unwind or calm self
• Poor Self Concept/body awareness

Joan Dostal will be attending our Research & Awareness Conference in Cincinnati in July to discuss these issues that sometimes happens to a child who has Down syndrome or mosaic Down syndrome and will give us all some great ideas on how to help our children with these problems.This will be a very interesting topic and something very important if your child is dealing with any of these issues! I personally have a few sensory issues myself and I can tell you first hand that I would love to be rid of them completely! Imagine if your child is experiencing this same thing and maybe they are just too young or do not have the communication skills yet to tell you how icky it feels to have Sensory Integration Disorder!

If you haven’t yet registered for the Down Syndrome Research & Awareness Conference, please don’t wait too long! March 31 is the early registration deadline and after that, the prices will go up! Also, the Sheraton Cincinnati North Hotel and Indoor Water Park is booking up fast, so be sure to reserve your room before they all run out! Just click here for all the information!

Dr. George T. Capone is a leading researcher at Kennedy Krieger Institute to better understand those with Down syndrome and Neurobehavioral disorders such as Autism.

Children with Down syndrome have a higher risk to have Autism than the general population. Considering that right now in America, Autism is quite high, because the population of those with Down syndrome is much smaller than the general population, the odds of having Autism increases. 

My son with mosaic Down syndrome also has Asperger syndrome, which is on the Autism spectrum. So, I know first hand what this world of duel-diagnosis is. 

Dr. Capone and his team of researchers are exploring the link between children with both Down syndrome and autistic spectrum disorder ages 3 to 4.5 years. Another, drawing from a population of individuals ages 15 to 35 years of age, seeks to better understand the relationship between Down syndrome and neuropsychiatric disorders (i.e., depression, obsessive-compulsive tendencies, movement disorder and cognitive decline). Another study involves males ages 5 to 10 years of age, for genetic difference in children with mental retardation. Dr. Capone is also studying children with Down syndrome and Congenital Heart Disease (CHD). 

Dr. Capone will explain more about his research on Down syndrome and all the Neurobehavioral disorders associated with it and help parents and professionals better understand what to do to help their child with these disorders. 

You can click here to read all of Dr. Capone’s research studies.We are still working out the details of the research at the conference, but I am pretty sure that Dr. Capone will be conducting research at the conference. So, be sure to indicate if you are interested in participating in research on your registration form, so we can set you up appointments prior to the event.

I have never had the opportunity to meet Dr. Capone, so I really look forward to hearing him speak at the conference. The more that I go through each of these speakers the more I am thinking that we really are going to have to have these workshops recorded! I want to be able to hear each of them and I know that you do too! So, we will have to look into those options and talk with a few friends who might can help out in that area. 

In this past week, we have had several more families sign up to attend our conference in July in Cincinnati. If you haven’t signed up yet and you are still waiting to hear if a certain person is coming or if you still are not sure, please ask me the questions that are on your mind! I will answer anything you want to know! Remember that you can go to our site by clicking here for more information on the conference and to register and reserve your hotel!

So I am telling you about all the great Down syndrome Experts who will be attending the July 10-12 Cincinnati, Ohio conference. The reason I am going through each of these, is to not only let you know what you can expect, but to also convince you that THIS IS A DOWN SYNDROME CONFERENCE! It seems that no matter how often I say that, there is, for some reason this question that hangs over us always asking if this conference is just for mosaic Down syndrome. The answer, of course, is no. This is a Down syndrome conference. People with mosaic Down syndrome experience the exact same delays and health issues as a person with Down syndrome, it may sometimes be at a different degree, but the same issues are still there.

One of our very favorite presenters will be once again bringing her fantastic information to our conference this year! Sara Rosenfeld-Johnson, M.S., CCC-SLP will present a two-hour workshop on Saturday to give you the most information and tips about Oral-Motor Therapy for speech and feeding problems. 

Sara has over 35 years experience as a Speech/Language Pathologist and is the founder of  TalkTools^®/ITI / Innovative Therapists International and the author of Oral-Motor Exercises for Speech Clarity, Assessment and Treatment of the Jaw-Putting it all Together: Sensory, Feeding and Speech, The HOMEWORK Book, the Drooling Program, Activities for Kids, Assessment and Treatment of the Jaw and other educational materials.

She has developed TalkTools^®  which is an assortment of horns, straws, brushes and other items that will help a child with Down syndrome or mosaic Down syndrome with their oral-motor problems, speech delays and feeding problems.

Every time we have ever had Sara I find families lingering after the workshop to find out more information and talk with Sara personally. She is a wonderful, down-to-earth person who truly cares about those with all oral-motor problems. Without TalkTools® children would not have all the great opportunities they have today to help those speech delays and feeding issues.

If you have a child, no matter what their age, who has any speech/language delays or feeding problems, you will not want to miss Sara Rosenfeld-Johnson’s great workshop!

To find out more about the conference, and how you can register, just go to our website by clicking here.

Don’t Wait! Early Registration ends on March 31st and the Hotel is filling fast!

Another fantastic Down syndrome expert who will be presenting at the Down syndrome Cincinnati conference in July is Dr. Libby Kumin. If you have never had the opportunity to meet Dr. Kumin, you are in for a treat. But even if you have heard her speak before, the information she is bringing to our conference is brand new and extremely helpful, especially for those who have teenagers and adults with Down syndrome and mosaic Down syndrome.

Dr. Libby Kumin, Ph.D., CCC-SLP, is the author of “Early Communication Skills in Children with Down Syndrome “, “Classroom Language Skills for Children with Down Syndrome “, “Helping Children With Down Syndrome Communicate Better” and “What Did You Say? DVD A Guide to Speech Intelligibility in People with Down Syndrome” She has also co-authored many books and papers and is the Director of the Graduate Program of the Department of Speech-Language Pathology/Audiology at Loyola College in Baltimore, Maryland, where she is also Founding Director of the Down Syndrome Center for Excellence.

Just recently, Dr. Kumin has begun a new adventure in the communication skills of individuals with Down syndrome and mosaic Down syndrome. In her recent and current research, Dr. Kumin has found the need for a real evaluation tool that will enable teens and adults with Down syndrome and mosaic Down syndrome to be evaluated according to their communication skills and match them with appropriate jobs in the future. She has discovered that by focusing on these specific communication skills as children and adolescents, it is possible to prepare them for adulthood and help individuals with Down syndrome and mosaic Down syndrome obtain true jobs that fit their skills. Additionally, she has developed a very special technology that is already being used to help individuals with mosaic Down syndrome and Down syndrome successfully use computers in the workplace.

Families of elementary age children, adolescents and adults with Down syndrome or mosaic Down syndrome will benefit  from this workshop. Dr. Kumin is a wonderful lady and a great person to know! She truly cares about people and has dedicated her life to help everyone with Down syndrome and mosaic Down syndrome. She is on International Mosaic Down Syndrome Association’s advisory board and not only does research for Down syndrome, but also does research on mosaic Down syndrome.During this workshop she will be letting everyone know about her new research findings as well.

To reserve your hotel and register before our Early Registration Deadline ends (March 31) just click here for all the details!

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Want to know a bit more about me and my family? Need some parenting advice? Just need a laugh after a long day? Visit my parenting blog at http://rememberwhen.today.com/

As you know, I have been planning for the past 9 months for our July 10-12 Down Syndrome Research & Awareness Conference. Early registration for the conference ends on March 31st. After that, the costs will go up some.

For the next few weeks I am going to tell you about the wonderful speakers we have coming to our conference. This will enable you to know what to expect, who will be there, and what you will miss if you don’t come!

If you need financial assistance, please email Becky at Becky @ imdsa. org and tell her your name, city, state, zip, phone number, email address, how many adults and how many children are coming and if your child has Ds or mDs. She has a great list compiled of places that may help you with your expenses and will be happy to help you! Also, if you are registered with your local ARC, contact them! THEY WILL HELP!

Did I mention that this conference will be at the Sheraton Cincinnati North Hotel and Cocoa Keys Indoor Water Resort?

The agenda for the weekend is as follows:

Friday July 10:

Research appointments with various researchers for all interested families with Down syndrome or mosaic Down syndrome.

Down Syndrome Board Networking Session

Family Reunion and Silent Auction

Saturday July 11 & Sunday July 12:

Research & Awareness Conference: 4 ongoing workshops throughout the day. This is a life-span conference so no matter how old or young your child/adult is, we have workshops for you! (Families of teens/adults: I know the system is broken and you feel left out there to do it alone. I have searched the country for speakers who can REALLY help! We have them!) The theme for this year’s conference is BUILDING BRIDGES FOR DOWN SYNDROME Together, we are bridging the gap between the Ds community, the mDs community and the general community.

Youth Conference: Youth ages 13-adult (sibs included) will have a blast with 3 ongoing workshop tracts to choose from! Recreation, Future Planning, Personal Growth The theme for this year’s conference is Finding N.E.M.O-NEW EXPERIENCES; MORE OPPORTUNITIES

Kid Konference: Children ages 2-12 (sibs included) will not want to leave as they are entertained by various presenters and learn all kinds of new and interesting stuff! Children will be divided into 3 age groups in separate rooms for maximum fun!

The children will be supervised by Genetic Counseling students, ST,OT, and PT students and student teachers as well. This program not only gives the parents peace of mind and the kids a great time, but also will educate the students way beyond what a text book can teach them!

 
don’t worry… after a few weeks in a nice quiet hospital they were fine!

Exhibitors will be present throughout the weekend!

Saturday Evening: 

Join us during our exciting banquet! This is more than just a meal together, this is an experience that will last a lifetime! We have two phenomenal speakers who will not only entertain you but also inspire you! We will give out awards at this time and recognize all the great volunteers. And, all self-advocate graduates will receive a special certificate of accomplishment for their great efforts! Additionally, you will be entertained by the Youth and special art projects will be on display from the Kid Konference!

After the banquet, don’t leave! We are having a Dance for All and this is the most exciting part of our conference weekend! Everyone has a blast!

So… that is just a little about the conference. Starting tomorrow, I will begin telling you about the presenters. Who they are. What they do. And what great information they can provide you with at our 09 Down Syndrome Research & Awareness Conference.

For more information, you can visit our website at: www.imdsa.org

Each day, I have many different visitors visit my blog for various reasons. Either you are a regular viewer (which I appreciate more than I can possibly express), or you have stumbled upon my blog in the midst of searching for information (possibly on Down syndrome or mosaic Down syndrome) with your search engine. Gone are the days when we waited for the Encyclopedia salesman to arrive with our new volumes of information for the year! Now, with the World Wide Web, information on anything you can imagine is at your finger tips! It is a wonderful thing for sure!  

Each day, I am able to look at statistics on how people have come upon my site and see what words they put in their search engines that brought them to my site. Some are quite interesting, some are downright strange and I wonder how they were directed to my blog with their search, and then others makes me say, “Wait! Come Back! Ask Questions!” because I would hate for these people who are looking for information to not be fully fed with the information they needed.

So, for the next several days I am going to answer these questions that have been addressed several times that visitors have asked through their search engines and because of their search, they were directed to my blog. These are the most frequently asked questions about Down syndrome, mosaic Down syndrome, disabilities, prenatal diagnosis, and programs for those with Down syndrome or other special needs.

In the midst of it all, if you have any questions PLEASE ASK! If you don’t ask you won’t know! You can leave a comment or send me an email if you would like to talk privately. There was a time, not too many years ago, that I had no information on Down syndrome or mosaic Down syndrome. My son was already a teenager and I was clueless! Then, I started asking questions-lots of questions! And before I knew it, I was the president of International Mosaic Down Syndrome Association and considered the most knowledgeable person in the world on mosaic Down syndrome! So, ask questions! It is the only way you will know the answers.

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Most of you already know who Yvonne Pierre is, but for those who don’t, Yvonne is an amazing woman who is always looking for new ways to help families with children with Down syndrome. She has a young son of her own who has Down syndrome and since his birth she has been working hard for all of the families throughout the world to be better informed about Ds.