MOSAIC MOMENTS

Yesterday marked a very sad day for our family at IMDSA.  Last week we heard of a family who had received the news that their baby would have Down syndrome. Like any family receiving this news, they were shocked and afraid.  They were not unfamiliar with Down syndrome completely. They had an adult niece with mosaic Down syndrome. But in their minds, having a child with complete Down syndrome would be just unbearable. Last week, they went to a counseling session, but for some reason the father was not allowed in the room. So, this mother, scared and confused, talked with the counselor without her husband about the future of their baby. After the meeting she was resolved to abort this baby. Yesterday, although her husband was against it, sadly she followed through with her resolution and ended her four month pregnancy.

Many people may feel outraged that this mother choose to abort her baby. Some may not even care. I am not here to judge, but I do want to address why people abort their babies when discovering they may have Down syndrome.

Mainly it is out of fear. Fear of the unknown. Fear that raising the child will be too difficult. Fear that they will fail as parents. Fear that having a child with Down syndrome will “change their life”.

Unfortunately, this fear is fueled by the doctors and counselors delivering the news of this diagnosis. The majority of these professionals never know anything about Down syndrome outside of what their outdated text books tell them. They have never had the opportunity to get to know a person with Down syndrome. Yes, they deliver babies that have Down syndrome, but within a few days those babies go home to be with their families. They don’t see their first smile. They don’t hear their first laugh or first words. They don’t witness the absolute joy of the baby’s first steps. And they don’t watch this child grow up to be an adult who later finds a job and eventually falls in love.

Instead, they tell the parents that having a child with Down syndrome will be a burden to their family. They tell the parents of all the worst case scenarios. They paint a picture of a very ill child who will need constant medical care that would skyrocket the family’s financial limits. They tell the parents that their child will not read or write. They tell the parents that the child will require so much care that their other children would suffer. They tell the parents that the strain will be far too much to bare and their marriage may crumble under the burden of this child. Then, they “suggest” (strongly) that the parents abort the baby and try again later.

Doctors are supposed to be right. They are, after all, the “professionals”. And, in a lot of cases, doctors are right. But in this case, they are wrong. 

People with Down syndrome can have health problems. They can be born with heart defects. They can have Thyroid disease, digestion problems, and even Leukemia.

Of course, so can everyone else in the world who doesn’t have Down syndrome. When a child is born with a heart defect sometimes surgery isn’t even needed. If it is needed, most children bounce back pretty quickly after surgery. If they have Thyroid disease, a simple pill a day will keep that under control. Digestion problems? It depends on what the problem is. Most of these can be controlled with diet, some require surgery or medicine. Leukemia? The good news is, if your child has Leukemia and has Down syndrome, they have a much higher survival rate than those without Down syndrome. Will it cost you more to have a child with Down syndrome as opposed to having a child without Down syndrome? Read Here about those real statistics.

Children with Down syndrome usually do require extra help in school, but that doesn’t mean they can’t read or write.  It may take them a little longer to get it, but they will get it.

Will your other children suffer?  Actually, current research suggests that siblings of children with Down syndrome are more positively affected than negatively. You can read that research here.

Without a doubt, having a child with Down syndrome will change your life! But not in the ways that most people think.  Having a child-with Down syndrome, mosaic Down syndrome, or no syndrome at all, WILL CHANGE YOUR LIFE! Because having a child makes you a completely different person than you were before. You are responsible for another human being. And that is a big responsibility. The child will look to you for guidance, shelter, nourishment, and love.

And, if you happen to have a child with Down syndrome, then you may learn things a little differently than you would if your child does not have Down syndrome. Please make note that I said, “you may learn things a little differently”. Having a child is a learning experience. It doesn’t matter if they have Down syndrome or not. You will screw up along the way. You will NOT be the perfect parent. Your child will not be the “perfect child” either. There are no guarantees in life.

If you find out that you are pregnant and that your child may have Down syndrome or mosaic Down syndrome and you feel as though you can not be a parent to this child. That is Ok too. Some people just don’t feel like they are cut out to be a parent of a child with Down syndrome. But before you go through with your abortion, please keep in mind that there is a two-year waiting period for families who want to adopt a child with Down syndrome.

Why is there such a long waiting period?

Because over 90% of babies with Down syndrome are aborted each year and over 90% of families want these children more than any other child in the world!

No one will blame you for putting your child up for adoption. In fact, they may admire you just a little bit more for the extreme courage it took for you to say, “I want the very best for my child.”

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

Parents of children with Down syndrome (Ds) are universally concerned for the wellbeing and treatment of their children. In 2008 The National Institutes of Health (NIH) developed a research plan to advance understanding of Down syndrome and speed development of new treatments for the condition, the most frequent genetic cause of mild to moderate developmental delays and associated medical problems. The plan set research goals for the next 10 years that build upon earlier research advances fostered by the NIH. This goal will help families and individuals with Ds. However, with the busyness families of children with Down syndrome experience from therapy and doctor appointments to school activities and after school sports families rarely have the opportunity to participate in Down syndrome research.

The Down Syndrome Association of Greater Cincinnati (DSAGC) is hosting “Building Bridges for Down Syndrome” the fourth Biennial Research & Awareness Conference presented by the International Mosaic Down Syndrome Association (IMDSA) on July 10-12 in Sharonville, OH at the Sheraton Cincinnati North Hotel & Coco Keys Indoor Water Resort. Families will have the opportunity to participate in various survey and non-invasive research activities with many leading researchers in the Down syndrome field.

Kristy Colvin, President of IMDSA explained, “Families are busy and researchers have too few participants. By bringing families and researchers together in one place to participate in these studies, we are enabling both communities to come together to learn more about Down syndrome.”

        Connor Gifford

In addition to the research, families and professionals will have the opportunity to learn more about all aspects of Down syndrome throughout the weekend. Over 30 of the nation’s top Down syndrome experts will be on hand to present various workshops in this life-span conference. The event will kick off with Keynote speaker Self-Advocate/ Author  Connor Gifford and Congresswoman Cathy McMorris Rogers who began the Congressional Down Syndrome Caucus after her son, Cole was born 2 years ago with Down syndrome.

Congresswoman Cathy McMorris Rogers and Family

As a family event, children with DS (and siblings) ages 2-12 will have the opportunity to learn from a variety of presenters who will offer fun and learning activities from Tumblebus and Karate to Stranger Danger and Dealing with Bullies. Children will be supervised by students in IMDSA’s Student Learning Program. This program allows university students interested in a career that serves those with Ds the opportunity to learn what their text books do not teach them about Down syndrome. Teens and Adults with DS (and siblings) will have the opportunity to learn a wide variety of topics from budgeting and relationships to Tae Kwon Do and Art with 20 interactive workshops throughout the weekend to choose from.

Additional events for the weekend will include 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 and the Family Awards & Celebration Banquet & Dance with self-advocate Jennifer Katz and Comedian/Musician Dan Kulp.

Early registration will end on June 26^th. Late registration will be available at the door.  For more information and how to register for this event visit www.imdsa.org or call IMDSA at 888-MDS-LINK or DSAGC at 513-761-5400

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

 # # #

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

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 50^th Anniversary of the discovery of the extra 21^st 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.

Sometimes there are some advantages to having A.D.D. I tend to hop from one place to another when I am looking for something online and just like when you go to the store for one thing and come out with a special treasure you never knew even existed, most of the time when I am surfing on the web, I often find a special treasure here and there that I never knew was even there!

Just recently, I happened upon such a treasure and if you are a parent of a child with Down syndrome or Autism or any learning disability or developmental delay, I think you will agree that this is a fantastic find! Over the weekend, I had the opportunity to talk on the phone to the founder of Get IEP Help, Yael Cohen, and we had a great conversation about all that Yael does to help parents understand the whole IEP process.

Yael says,  “When things just aren’t going so well with your child at school, you want to know why, what to do, and how to get it. I have over 30 years experience doing just that. Along with helping parents successfully advocate for their children’s educational needs, I also directly help children with learning challenges to read, spell, and learn other academic skills and strategies. I have a B.A. in Speech Pathology and an M.A. in Special Education, with an extensive background in reading, math, and writing instruction. Parents like you seek me out for my expertise, but also because I can help you not only figure out what will work for your child, but where you find the local resources. I am a true believer that your child deserves a great education. With the right kind of instruction, every child can learn - yours included. In my spare time, I enjoy the gorgeous Colorado mountains. I have adult twin children, who finally(!) sleep through the night, and I live in Boulder, Colorado. I look forward to assisting you and your child.”

She has a great deal of information available at your fingertips on her website  and she offers FREE TELESEMINARS ,(next one this Tuesday!) a FREE PHONE CONSULTATION, several books and products to help you with IEP’s and help you with your child’s learning problems,  and if you need a little extra help, Yael will help you with that Second Opinion . As a professional she can help you with your IEP and take some of the anxiety and tears away!

Consider this….

Does your meeting seem like Debra’s in Florida?

“I sat in that IEP meeting with my heart throbbing.  There were at least a dozen people, most of whom I had never met, sitting on the other side of the table, telling me about my child’s numbers.  They kept smiling at me while they spoke ― mostly in what sounded like Greek.

“They gave me lots of papers and told me I should sign.  Although they said I’m their partner, I seemed to be the only one who didn’t speak Greek or understand what the numbers meant.   I was still trying to grasp what they said about something being wrong with my child.  They asked me questions, but didn’t ask more about my suggestions or write down what I said.  I thought I knew my child, but suddenly, at that meeting, I felt stupid and left out.”

Or , does your IEP meeting seem more like Susan’s, in Colorado?

Susan’s son, Doug, was so learning disabled, that in the spring of his first grade year, he could not read anything, not even his name!  He cried in class when the teacher said, “You don’t really need my help!

You can do it if you try.

“Nightly, Doug confided to his mom, Susan, that he was clearly the stupidest kid in 1st grade.  Finally, the school agreed to test Doug. Susan was both anxious and excited on the way to the first IEP meeting. She thought that for sure the school would figure out what Doug’ problems were and how to solve them.

“Susan was in shock as the meeting unfolded.  The school team used gigantic words that she didn’t understand and kept spewing out numbers that made little sense.  They blamed her for the fact that Doug couldn’t read and even suggested a change in visitation between her and Doug’s dad.  In her gut, little that they said felt right to her. 

“Over and over, the staff kept asking Susan to trust them and to sign the forms. But when she asked what they would be doing to help Doug, the answers were again full of foreign-sounding words and numbers. She refused to sign.  Instead, Susan took the paperwork home and tried to do some quick research on the internet, but there was just too much she didn’t understand.  In tears, she called an old friend of hers who had help from an advocate for her child.”

Here’s what Susan said afterwards…

“It was just what I needed.  Yael, the advocate my friend recommended, explained everything to me in plain English, showed me what the testing meant, and analyzed the IEP (Individual Education Plan) document for me, letting me know which parts made sense and which parts did not.  She asked me questions and offered solutions.

She gave me a plan to follow for the next meeting and then convinced the school to use a research-based reading program for Doug.  She helped us to find a dyslexia specialist to help him outside of school.  She is a walking encyclopedia, who gave us so many resources!

Over time, Yael has taught us how to advocate effectively for our child.  No longer do I feel stupid in the meetings about my son.  And on top of that, my son now is a avid reader!  I’m really excited she’s offering these online conferences for parents, because all parents of kids with special needs to know the secrets of how to get through!

You Don’t Want To Miss This Online Conference: How To Sign Up

Go Now To www.GetIEPHelp.com/spedteleseminars.html and Register for Free Online Seminars for Parents of Kids With Learning Challenges.

This week’s online/phone seminar on Tuesday is on How To Break Down Academic (and

Household) Tasks So That Your Child Can Learn How To Do Them.  To sign up for this and other Get IEP Help free online parent seminars, go to:  www.GetIEPHelp.com/spedteleseminars.html

When you get the conference info, you’ll also get a link to the last online conference Yael did, which is free online for just a few more days.  You’ll also have an opportunity to ask a question for this conference.

What Else You Can Discover:

You might want to check out Yael’s other services while you’re on www.GetIEPHelp.com  –  She offers a whole “Get IEP Help System” which helps you do it yourself, 2nd Opinions on your upcoming or last IEP,

and even a super online reading program for beginning or struggling readers.

Folks, it doesn’t have to be that bad – check it out today!

 Please check out Yael’s website by clicking here.

I know that it has been a while since I have posted a blog and I apologize to my devoted readers for my lack of writing. I have been incredibly busy with the planning of our Down syndrome Research & Awareness Conference and just have not had the time to write any more. Today, I announced our schedule for the main conference and we should have that on our site in a few days. Within a few weeks we should have our Kid Konference and Youth Conference schedules ready to go and I will publish them then.

If you have not yet registered for the conference in Cincinnati, time is running out!

Online Event Registration - Powered by www.eventbrite.com

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.

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.

In the research study conducted by VCU/MCV that we just recently posted on International Mosaic Down Syndrome Association’s website, a very interesting finding occurred. When comparing those with mosaic Down syndrome and Down syndrome researchers found that individuals with mosaic Down syndrome had a more frequent occurrence of congenital heart defects compared to those with complete Trisomy 21 Down syndrome.  Additionally, the found that individuals with mosaic Down syndrome had some specific heart defects that are not commonly found in those with complete Trisomy 21 Down syndrome.

As they continued to research this, they found that those with a higher percentage of Trisomy 21 cells in their blood had an increased risk of congenital heart defects compared to those who have lower percentages in their blood. 

I am sure hearing this for the very young parent or perhaps a parent who is prenatally diagnosed, at this point you are about to freak out completely! 

Take a deep breath……

First of all, I have found that there is a common misconception about these heart defects. Congenital means they are born with it.  You can not develop a congenital heart defect. Either it is there or it isn’t. 

For those who know their baby does have a congenital heart defect…. I know this is scary to think about. Heart problems are a huge thing! Our heart is very important! However, the majority of these heart defects that occur in children with Down syndrome and mosaic Down syndrome either ‘fix’ themselves as the child grows the hole closes or the problem disappears.

Then, there are others who do require surgery.  But now, because of the extreme advances in medicine, heart surgery is not near the issue it used to be. Most children are up and running around way before the doctor thinks they should be and they rarely experience any complications after the surgery. (depending on what it is)

This is the chart included in this study to demonstrate the heart defects found in those with mosaic Down syndrome compared to those with Trisomy 21 Down syndrome. 

 a Number of people having heart defect (number surgically corrected).
b Several subjects had more than one heart defect. Thus, the total number of specific defects is greater than the total number of individuals having a congenital heart defect.

I hope this helps you to understand this some. If you have questions feel free to leave a comment.

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.

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.

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.