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Archive for the 'Adult Information' Category

Jun 11 2009

“Building Bridges for Down Syndrome” 4th Biennial Research & Awareness Conference 2009

 

 

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!!

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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 50th Anniversary of the discovery of the extra 21st 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

 

 

 # # #

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

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Jun 10 2009

“Building Bridges for Down Syndrome” 4th Biennual Down Syndrome Research & Awareness Conference 2009

Parents of children with Down syndrome (DS) are universally concerned about the wellbeing of their child’s health, future, and connecting with other DS families.  The Down Syndrome Association of Greater Cincinnati (DSAGC) hosts “Building Bridges for Down Syndrome” the fourth Biennial Research & Awareness Conference presented by the International Mosaic Down Syndrome Association.  (IMDSA)

 

The term Down syndrome was named after Dr. Langdon Down a British doctor who first described the condition in 1887. This year marks the 50th Anniversary of the discovery of the extra 21st chromosome that causes Down syndrome.  Ds is a genetic condition that occurs one in every eight-hundred 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.  Attendees of this biennial research and awareness conference are empowered with information and 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 (and siblings) will learn everything from how to manage a budget to relationships and friendships in the Teen & Adult conference.  Children ages 2-12 with DS (and siblings) will learn a variety of subjects from Acting and Puppetry to Bullying and Stranger Danger in the Kid Konference. While students interested in a professional career pertaining to DS will supervise these youngsters to have a better understanding of what DS really means for the individual.   Together families and professionals will enjoy the Friday Night Family Reunion & Silent Auction with entertainment from The Amazing Portable Circus and Self-Advocate’s Sujeet Desai, Tim Colvin and Casey Morton.

 

At the 2007 conference held in Richmond, VA, attendees said, “IMDSA’s Conference is like no other I have ever been to.  You have a sense of family the moment you step through the doors.  Everyone is welcoming and I learned so many things from all the speakers!” 

 

Join IMDSA & DSAGC Friday, July 10 through Sunday, July 12 at the Sheraton Cincinnati North Hotel and Indoor Water Resort in Sharonville, Ohio for a full scheduled weekend of information, family fun, socialization, and entertainment by Sujeet Desai, Dan Kulp, Tim Colvin, & Casey Morton.  Over 30 experts will discuss various topics that are 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 DS and researchers and professionals will also benefit greatly by attending.  There will be many great activities, research, workshops, and the highlight of the weekend with the Family Awards & Celebration Banquet & 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 now!  To register and for more information, www.imdsa.org

For Main Conference Schedule click here.

 

For Teen & Adult Conference Schedule click here.

 

For Kid Konference Schedule click here.

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May 20 2009

Big News for Mr. Blue Sky!

In 2007, International Mosaic Down Syndrome Association was approached by the writer/producer of the movie Mr. Blue Sky. Mr. Blue Sky is a wonderful movie about three children (2 girls and 1 boy) who grow up together and face the obstacles that most children grow up with. One of the girls in this movie has Down syndrome.

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In the first of the movie, the boy’s mother kills herself. However we don’t really know why until the end of the movie. Because of this, the boy’s father (played by Home Improvement/Family Feud- Richard Karn) becomes an alcoholic.

As they grow up, the boy and the girl (without Ds) (played by Mary Kate Schellhardt) start dating but they really have too many differences to make it together. Then, the boy (played by the late Chaney Kley) winds up falling in love with the girl with Ds (played by Ashley Wolfe) and despite a lot of contriversy they wind up getting married.

IMDSA has been a major supporter of this movie from the beginning of its release. Although many feel as though this is unrealistic, we at IMDSA know that it is very possible for individuals with Down syndrome to marry individuals without Down syndrome because it happens within our community of mosaic Down syndrome quite often. (just ask Casey and Jennifer

You can purchase this DVD and see trailers of the movie by clicking here.

So….. our BIG NEWS  for the day.

I just got a message from Tom Lee-the writer/producer of Mr. Blue Sky

Kareem Dale, the Special Assistant to US President Obama for Disability Policy will be traveling to Serbia on June 10th. The living conditions for people with Down syndrome in Serbia is horrible with the life expectancy of these individuals only reaching 10 years old. It is because of the attitudes of those with disabilities that these individuals are placed in institutions with deplorable conditions and left to die.

It is Mr. Dale’s hope that by showing this movie to the government officials in Serbia, perspectives will change. They will see that individuals with Down syndrome are just like everyone else. They can grow up to be wonderful members of the society and add great value to their communities.

Our movie is truly making the difference that it was created for! To show everyone that people with Down syndrome have the same hopes, the same dreams, the same ambitions and with acceptance, they can reach those dreams and goals! It is just a matter of letting them do what everyone else does and not holding them back from all the can accomplish!

 

This is a huge step in the right direction and I pray that the government of Serbia can change their perspectives, even just a little, and realize that people with Down syndrome are PEOPLE!

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May 18 2009

23 years ago today…

23 years ago today I was lying on a narrow hospital bed waiting for my baby’s lungs to develop before delivery for the next day. The next day, was D-Day. This day would mark 32 weeks in my pregnancy. Throughout my pregnancy I had Placenta Previa-basically this means that my placenta was falling out. So, I was put on bed rest and when I continued to have trouble I was admitted indefinitely into the hospital and had been there for a month before my water broke-which marked my indefinite D-Day.

I was young-only 20 yrs old. It never occurred to me that babies died. It never occurred to me that having a premature baby was a dangerous thing. It never occurred to me that at 20 years old, I would come face to face with death-not just for my baby, but also for myself. And, it never occurred to me that my baby would be born with anything out of the ordinary.

Oh sure, I knew these things happened….to other people. 

So, 23 years ago today I lain on this hospital bed in a “semi-private” labor room in which I had various “room mates” for my three-day stay. I watched them come and go and it never occurred to me that within the next 24 hours my life would change forever. 

On May 19, 1986 I had a beautiful baby boy. I wasn’t able to see him till the day after he was born because I was too weak and far to sick from the loss of blood since I had refused a transfusion because of the high risk of AIDS in transfusions back then. 

Having a baby changes your life. This one definitely changed mine. I could say it was because I was near death. Or even because he was too.  But that is just where the story begins. It wasn’t life-altering at that moment. Probably because I was far too young to realize the true danger that we were both in. Even when my doctor came in to my room with tears in his eyes as he explained that I was dying and there was nothing more that he could do, it never occurred to me that I would actually die. And thankfully, only by God’s grace, I didn’t die. And neither did my baby.

The beginning of my life-altering moment came 2 years later with a blood test that revealed that my beautiful baby boy had a few extra chromosomes. The moment when they told me that he had mosaic Down syndrome and there was nothing in the literature; no book, no pamplet, not even a flyer, that could tell me what to expect with this diagnosis, my life changed. 

Many would think that my life changed for the worse. After all, I had no information, I had no one to talk to and compare notes, I had no support. But I had my “Mommy Instincts”. And as the years went by, I realized that raising a child with mosaic Down syndrome was no different than raising any other child really. Sure, we had to make up some rules as we went along! Definitely, I had a few Pity Parties throughout the years. But the thing I learned the most is, having a child with extra chromosomes is no different than having any other child. And I have others to compare it to! 

23 years ago tomorrow, my tiny 4 lb 4 oz baby boy was born via Emergency C-section. He had his Mommy’s dark brown eyes and was so tiny that his 6 inch high Teddy Bear was more like a Grizzly to his small frame. He loved to snuggle up to me and fall asleep while I rocked him gently in the squeaky old  wooden rocker in the “growers room” at NICU. I loved the way he would yawn and crinkle up his face like a miniature wrinkled old man. I loved the way he smelled when I held him and when I had to leave him I would smell my shirt for the rest of the day-just to try to stay close.

Now, 23 yrs later, that tiny baby is a grown man who takes care of his mom. He is always sensitive to my needs and jokes that he is amazed that I lived through his hyper-active years. He says that he is glad that he has mosaic Down syndrome because without it, he wouldn’t be the person he is today.

I know that if Tim did not have mosaic Down syndrome, I would not be the person I am today. I would not be as strong as I am. I would not have the knowledge that I do. I would not have the wonderful extended family that I have. And, International Mosaic Down Syndrome Association would not exist the way that it does. Families would still be left out in the cold wondering what this means for their children.

Tomorrow is my baby’s 23rd birthday. For this special day, I have a very important announcement that you may not want to miss.  

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May 02 2009

Changing Adult Transition for Down Syndrome

I have not posted in a while only because I have been swamped with conference planning! If you have not yet reserved your spot for the conference time is running out!

 


MySpace Countdowns

 You can find out how to register for the conference by clicking here

One workshop that we will be having at this conference is a Round Table discussion on Adult Transition and the things that need to be changed with this system in America. When an adult with Down syndrome finishes high school, there should be a transition team in place that will help the adult and their family to make decisions on what to do next. However, that system basically sucks. And, another problem many families are having is the emotional impact of “What do I do now?” Families have trouble letting their child grow up because they have been so focused on their well being for the past 20+ years and all the sudden all the support they once had is basically gone.

 

Tim at High School Graduation

It is time for a change. Just like back in the 70’s when families stood up and demanded that their children be allowed in public schools, families now need to stand up and pioneer this new step to a better future.

If you are interested in being part of this committee, would like to participate in the Round Table discussion in Cincinnati, or just have questions, you can send me an email at Kristy@imdsa.org and I will be happy to talk with you.

 

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Apr 06 2009

Mystery Diagnosis Tonight! Hannah Hannum

Tonight is the night! We have been waiting about a year for this day to arrive and it is finally here! Tonight at 10pm EST on Mystery Diagnosis we will have a small part of telling others about mosaic Down syndrome! This is a huge step for International Mosaic Down Syndrome Association as we will be able to reach so many more families whose children have mosaic Down syndrome and do not know that we are here to provide them with the support, information and research that we work so hard to provide to everyone!

Special Thanks goes to Holly Hannum for telling her daughter, Hannah Hannum’s story of being diagnosed with Myelodysplastic syndrome.(MDS) and later mosaic Down syndrome (mDs). Also, special thanks to Sue Johnson for offering her daughter Isabella to play the part of young Hannah! Not many times on Mystery Diagnosis do you get the opportunity to have 2 individuals with the same diagnosis and both were diagnosed later in life. These families did a great job of telling the story and if there is anything left out we will totally leave that in the hands of editing at the Discovery Health Channel.

If you would like to discuss this story after the show, I will be on Twitter (if I can figure it out enough! lol) You can find me on twitter by just clicking the box to the left of this post that says “follow” on Twitter.  To find out more and read more stories look below.

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On April 6, 2009 the American station, Discovery Health, highlights one of our families’ stories on Mystery Diagnosis. Hannah Hannum is one of thousands of individuals with mosaic Down syndrome who was diagnosed later in life.

 

The average age for individuals to be diagnosed with mosaic Down syndrome is 1-4 years of age. The most common reason for this late diagnosis is the lack of knowledge in the medical field on this rare form of Down syndrome. However, many individuals can go undiagnosed up into adulthood and there are still thousands who never receive a diagnosis.

For more information on mosaic Down syndrome please visit our FAQ’s of MDS

 

 

If you feel that you or a loved one may have mosaic Down syndrome, please contact us and we will be happy to answer your questions.

We invite you to meet some of our families who have received this diagnosis later in life.

Meet Hannah diagnosed at age 3*

 

Meet Isabella diagnosed at age 10 months*

 

Meet Ryan diagnosed at age 3

 

Meet Allison diagnosed at age 5

 

Meet Tim diagnosed at age 2

 

Meet Christina diagnosed at age 25

 

Meet Rachel diagnosed at age 6 months

 

Meet Emily diagnosed at age 18 months

 

Meet Aidan diagnosed at age 2

 

*featured on Mystery Diagnosis

International Mosaic Down Syndrome Association provides support, information and research to all individuals and families touched by mosaic Down syndrome. IMDSA is a nonprofit organization, and is dependent completely upon generous donations to continue its mission of helping families and individuals with MDS. All donations are tax-deductible to the fullest extent of the law.

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Apr 05 2009

What does the future hold for children with mosaic Down syndrome?

The most asked question of all young parents of children with mosaic Down syndrome and for that matter parents of children with any form of Down syndrome is “What will my child’s future be like?” As parents, we all have that stigma embedded into our brains and the worry follows close behind.

Of course, there is no way to predict any child’s future. For me, and many others, we just take it day by day. There is a scripture in the bible that says, “Don’t worry about tomorrow, because today has enough trouble of its own. Matt. 6:34″ This is something I have lived by, or at least tried to, throughout my children’s lives. They have taught me that there are no certainties. There are no guarantees. You just do your best and give your children the most opportunities possible, you don’t hold them back and they will blossom to whatever that may be!

About 7 years ago, my friend Susan did just that. Her daughter Melissa graduated High School, got married to her sweetheart, moved all the way to Maryland (from Texas) and she and her husband Adam opened a cafeteria that they still run today. Melissa has mosaic Down syndrome. Her husband, Adam is Blind. 

I held my breath!

I couldn’t imagine my child moving across the country away from me. I guess I am a worrier. I admired Susan for being able to let go the way she did and let Melissa live her life. 

A few years passed and Melissa and Adam had their first child-a girl! Marianne is beautiful and Melissa is a fantastic mother and Adam is a great dad! 

Your first question…. I know…. No… Marianne does not have Down syndrome. Melissa’s affected cells are not in her reproductive organs.

In 2007, Melissa and Adam came to our Research & Awareness Conference where Melissa was our keynote speaker for the banquet.  Last year, they began making plans to attend this year’s conference! However, their plans were changed. 

Like I said…. You never know what the future will hold!

Instead of attending the conference they will be taking care of their new son Adam John. Little AJ was born Friday April 3rd at 9:22am. He weighed 8 lbs and 12 oz and was 21 inches long. Mother and baby are both doing good. AJ has a bit of jaundice and a small Cleft pallet, but he is simply beautiful and already very alert for a newborn! Marianne is loving her new baby brother and everyone is very happy and proud to have him in the family!

I promised Melissa that I would not share pictures of her right after birth! I know what I looked like after my kids were born and although I think Melissa looks beautiful even right after giving birth, there is no way that I would do that to any mother! So, here is a picture of Melissa and Adam at our 2007 conference at our after banquet dance.

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The picture I am dying to share with you is this one! 

Marianne with her new baby brother AJ.

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No one knows what the future will bring. But with opportunities ANYTHING is possible!

Congratulations Adam and Melissa! You have the most beautiful children! I wish you all the best!

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Apr 02 2009

Big News Revealed!

This week, I have been giving clues each day on Twitter and Facebook about some very good news that would impact International Mosaic Down Syndrome Association and families of children and adults with mosaic Down syndrome.

When I began at the first of the week I gave the clue, “Once upon a time there was a little girl…”

Then Tuesday I realized that we had TWO major announcements instead of just one! But, both began with “Once upon a time there was a little girl…” so we were still good.

So, Wednesday I had two clues I had to give….

Clue # 1: this little girl got very sick & no one knew what was wrong with her. After testing, they found out she had…

Clue # 2: this little girl had mosaic Down syndrome but that didn’t stop her from following her dreams. After high school she married &

Then Thursday I gave these clues:

Clue # 1: After testing she had..Leukemia and began chemo. During chemo they found the real reason for the leukemia cells.

Clue # 2:  After high school she married & they moved away and opened a restaurant. Then they had a little girl.

So, now I have some final clues and will let you all know what all this means!

Final Clue # 1:  The reason this little girl had Leukemia was because she had mosaic Down syndrome. But no one knew about it!  And, without knowing about these extra chromosomes, the doctors were giving her what is considered toxic levels of chemotherapy for someone with mosaic Down syndrome or Down syndrome. Under most circumstances a person with mosaic Down syndrome or Down syndrome will die with the chemotherapy given under normal circumstances. For those with this extra 21st chromosome, a different protocol is followed. The good news is, this little girl survived and is in remission! But, that is not the exciting news I am sharing! So… stay with me here and keep reading…

Final Clue #2: Their little girl did not have extra chromosomes. This is not a huge surprise because people with mosaic Down syndrome have a percentage of cells with the extra 21st chromosome and the remaining cells are unaffected. If the cells are not in the reproductive organs, the chance of having a child with Down syndrome is much less.(not impossible, just much less) Last year, this couple attended IMDSA’s 2007 conference in Richmond Virginia and Melissa Bishop (this individual) was our banquet speaker. Last year, the found out that they were expecting another baby!

 

Conclusion and Finally the Reveal!

Big News for Clues #1: Hannah Hannum’s story is a very interesting one and a very important story to share with others. There are numerous cases of undiagnosed individuals and their lives could be in danger simply because they do not know they have mosaic Down syndrome.

This Monday, April 6th, The Discovery Health Channel will air Hannah Hannum’s story on Mystery Diagnosis at 10:00pm EST. We at International Mosaic Down Syndrome Association are very excited about this story airing! We hope that others will hear Hannah’s story and many lives will be saved from medical mistakes that can be avoided. In addition to Hannah Hannum on this show, Isabella Johnson will play the younger Hannah in the reenactment. This was a luck of the draw without a doubt! Hannah and Isabella-both having mosaic Down syndrome which is seemingly rare-live in the same city and were able to do this taping together.

 

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Hannah Hannum

As I write this, we are finalizing IMDSA’s home page for information on these stories as well as many other late or misdiagnosis stories. So, please click here and if it isn’t on at the time check back because it will be up soon!

 

 

 

Big News for Clues # 2: Friday, April 3 Adam and Melissa Bishop are expecting their second child-a son! AJ is scheduled to come by C-section and hopefully tomorrow I will have more updates on The Bishop’s and their new bundle of joy!

 

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Adam & Melissa Bishop

Congratulations Adam &  Melissa! I can’t wait to see pictures of AJ!

 

 

 

 

 

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Mar 29 2009

Youth with Down syndrome & mosaic Down syndrome

On July 10-12 the Down Syndrome Association of Greater Cincinnati will host IMDSA’s Down Syndrome Research & Awareness Conference . This is actually 5 conferences in one.

 

  1. Families and Individuals  participate in research with various Down syndrome researchers (by appointment)
  2. Down Syndrome Association Board Members workshop allows DSA board members to network and learn more to help run their DSA’s.
  3. Research & Awareness Conference allows families and professionals the opportunity to learn from over 30 experts in the Down syndrome field through 4 ongoing breakout sessions throughout the weekend.
  4. Children ages 2-12 (sibs included) have fun at Kid Konference while students get hands on experience to enhance their careers.
  5. Teens ages 13-adult (sibs included) enjoy themselves while learning great things at the Youth Conference

With our early registration deadline quickly approaching on March 31st I want to be sure that I tell you as much as I possibly can concerning the conferences.

Many have asked about the Youth Conference. This is for ages 13-adult and siblings are included and will also learn and have fun!

We have broke this into three themed tracts and youth can choose which workshops they wish to attend. We are still working on the finalization of this conference schedule, but to give you a general idea of the topics we are looking to be addressed, here are just a few of them:

Tract 1 Recreation and Leisure:

  • Social Networking
  • Acting and Movement
  • Sports - Special Olympics
  • Yoga
  • Karate

Tract 2 Planning for the Future:

  • Independent Planning
  • Self-Advocacy
  • Leadership opportunities
  • Transitioning to College
  • Money Management

Tract 3 Personal Living:

  • Self Defense and Community Safety
  • Special Friends Online
  • Relationships
  • Music and Singing
  • Jobs & Careers
  • Hygiene and Personal Care

The folks at Starfire U have been fantastic at planning this Youth Conference for us! I am very excited about all the possibilities for our Youth Conference this year and from past experiences, the youth who attend our conference not only learn very valuable information to help them with their lives, they also form lasting friendships that carry over far after this conference has ended!

To find out more information about the Down Syndrome Research & Awareness Conference and how to get financial assistance to attend, please click here to visit our website.

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Mar 28 2009

Children’s Conference for Down Syndrome Research & Awareness Conference

Many people have asked about what they can do with their children during the Down Syndrome Research & Awareness Conference in Cincinnati in July. International Mosaic Down Syndrome Association holds a very special Kid Konference for children ages 2-12 and Youth Conference for ages 13-adult.

 

When we first began our conferences back in 2004, we saw two needs that needed to be filled.

 

First, our parents and family members needed to be able to listen to workshop presenters, and ask questions that are sometimes difficult and uncomfortable in front of children. These families needed to be able to relax and not worry about what their children were doing and that they were safe. And, the children didn’t need to be bored during these hours the parents were away.

 

The second need that we saw was that geneticists, teachers, nurses, doctors and therapists were learning only the basics in their schooling about Down syndrome and very few had even heard about mosaic Down syndrome. These students were only learning what their books told them and they didn’t have a real perspective on what it truly meant to have extra chromosomes for the family and for the individual.

 

So, we combined these needs and developed our Kid Konference. Children ages 2-12 with Down syndrome, mosaic Down syndrome and their siblings are divided into three age groups. 2-5, 6-9 and 10-12. Within these groups, we invite students who are learning in a field that will put them in places where children with Down syndrome and mosaic Down syndrome will be. We do background checks on each student to ensure the children’s safety and the students supervise the children on Saturday and Sunday during their workshops. This enables students to learn what it really means to have Down syndrome or mosaic Down syndrome and gives them hands on experience with the children. Every student who attends this program also is allowed to attend the workshops of their choice to further enhance their careers and each receive a certificate of participation at the end of the conference. Every student who has attended this program has said that it has truly changed their lives and it is something that they will always remember.

 

Currently, we are still working on finalizing this schedule for our Kid Konference and each presentation will be geared towards the age group. But to give you a good idea about what is in store for the children, we are planning on the following topics:

  • Music Therapy & Fun
  • Art Lesson (will be displayed at banquet)
  • Yoga for Kids
  • Karate Moves for Fun
  • Sports
  • Everyone Can Cook
  • What to do about Strangers
  • How to deal with Bullies
  • Tumble Bus
  • Magician
  • Clown
  • Coloring with Coco the Bird (The Coco Keys Water Resort Mascot)

I hope this gives you a good idea about the Kid Konference! The cost is only $10 per child and this includes 2 snacks on Saturday and 1 snack on Sunday. 

Early Registration ends on Tuesday, March 31st!  After this prices for the main conference will go up. For more information on this and how to register, click here.

Tomorrow I will give you a little insight on what to expect for the Youth Conference!

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