MOSAIC MOMENTS

For Immediate Release: Franklin, TX- In 2004, Chandos J. Field (CJ) of Appleton, WI began considering adoption to expand her family and give her 7-yr-old son, Brendan a sibling to grow up with. She decided to consider adopting a child with Down syndrome, and began her search for information online. Field connected with a support system which provided her with numerous friendships and valuable information. Soon after, fifteen month old Emmalee became part of the family and CJ became part of a growing group of parents advocating for their children with Down syndrome.

Emmalee Field with The Traveling Afghan

Individuals with Down syndrome (Ds) can sometimes experience a variety of health conditions associated with the third copy of the 21^st chromosome that causes Ds. Some may be born with heart conditions, while others may have digestive problems, thyroid conditions or Leukemia. Most of the health complications associated with Down syndrome can be treated with proper medical care and individuals with Down syndrome are leading long, healthy lives because of these medical advances. However, it can sometimes be hard for a family coping with these conditions at the time.

While young Emmalee is relatively healthy, CJ noticed a lot of the little ones in her online circle going through many medical hardships. After teaching herself to crochet, CJ wanted to provide those children with an afghan to comfort them and let them know she was thinking about them and their families.

“This was my way to reach out to these families” says Field, “but there was not enough yarn or time to make every single child an afghan of their own.”

CJ decided to go a different route-one that would not only comfort the families, but also connect them in a very special way. Field decided to make one afghan that would travel throughout the world to reach all families of children with Down syndrome. The idea appealed to many families and in March 2009 “The Traveling Afghan” began its journey. When a family receives the afghan, pictures are taken to share on the website and the children are comforted with its soft fibers and bright colors before it is mailed to the next family down the line. But this is more than just a photo shoot. The Traveling Afghan has connected families of children with Down syndrome throughout the world in a very unique way that strengthens the bond between these families. It has also reconnected CJ with a child she provided foster care for during the child’s first three years of life. This child has now been adopted and has an afghan of her own specially made by Field.

Emmalee Field with The Traveling Afghan

In just the short few months that The Traveling Afghan has been moving from family to family, the project has grown so much that it now has its own website and has become a great tool of awareness for those with Ds. Families from all 50 states and 15 countries as far as Australia have added their name to the waiting list to receive their chance to share this common bond.

The Traveling Afghan will take a unique journey across the United States in July to reach the Down Syndrome Research & Awareness Conference-BUILDING BRIDGES FOR DOWN SYNDROME, being held in Cincinnati, OH on July 10-12. This International life-span conference is hosted by the Down Syndrome Association of Greater Cincinnati (DSAGC) and is being brought to the area by International Mosaic Down Syndrome Association (IMDSA). IMDSA’s president, Kristy Colvin will begin the journey with the afghan from her residence in Central Texas and make stops along the way to spread awareness about Down syndrome. Everyone attending the conference will have the opportunity to participate in the first largest photo shoot with The Traveling Afghan and then send it on its way to the next family to continue its journey. CJ Field has also generously donated another afghan which will be available at the conference’s Silent Auction that Friday evening. 

The project has become so popular among the families of children with Down syndrome that it has also branched off into “An Afghan of Their Own” in which CJ provides many children with their own afghan. To date, 24 children have received their very own afghan, in the same pattern as The Traveling Afghan in their choice of colors. To include your name on the growing list of families or make a donation so others can receive “An Afghan of Their Own” you can visit the website at www.thet21travelingafghanproject.com

For more information about the Down Syndrome Research & Awareness Conference- BUILDING BRIDGES FOR DOWN SYNDROME held in Cincinnati, OH, visit www.imdsa.org or call 888-MDS-LINK.

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International Mosaic Down Syndrome Association is a nonprofit organization designed to provide support, information and research to those affected by mosaic Down syndrome. Mosaic Down syndrome is a rare form of Down syndrome affecting 2-4% of the Down syndrome community. The Down Syndrome Research & Awareness Conference is a life-span conference held biennially to meet the needs of all families affected by all forms of Down syndrome.

 “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

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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

Last night the Discovery Health channel aired their Mystery Diagnosis “Black and Blue Baby” episode about Hannah Hannum and how she was diagnosed with a rare form of Leukemia called Myelodysplastic syndrome, then later it was discovered that the reason she had this rare form of Leukemia was the percentage of extra 21st chromosomes in her body that resulted in mosaic Down syndrome.

Hannah was lucky. She responded well the the chemotherapy that they were administering. However, if they had not discovered that she had mosaic Down syndrome, and gone ahead with the extra treatment they were planning, more than likely this would have been fatal for young Hannah!

Individuals with any type of Leukemia have a different kind of treatment than those without Down syndrome. This is because of the extra chromosomes and how they react to the chemotherapy. And without a diagnosis, individuals with mosaic Down syndrome can become very sick and even die because although most illnesses associated with mosaic Down syndrome are treatable, without knowing about the extra chromosomes they may not be treated properly or those illnesses may be left unnoticed until it is too late.

Dr. Peter Shaw from the Children’s Hospital of Pittsburgh was the doctor who treated Hannah Hannum and discovered the mosaic Down syndrome as well as a translocation of chromosomes 1 and 19. After this discovery, he recommended that all Leukemia patients who have acute myelogenous leukemia (AML) or Myelodysplastic syndrome (MDS) be evaluated for mosaic Down syndrome regardless if they had physical charateristics or other clinical features such as developmental delays associated with Down syndrome.

It is important to remember that mosaic Down syndrome is different in many ways from Down syndrome as much as it can be similar. Although individuals may not have the physical characteristics as one with Down syndrome or they may meet their milestones at an earlier age than those with Down syndrome, they still are at risk for certain health problems, developmental delays and learning differences.

Have a Question? Leave a Comment by clicking below on the comments link.

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.

Yesterday I told you about our great news about the Hannum family being on Mystery Diagnosis this Monday April 6th at 10pm EST. The twist to this story is when they taped the show they needed a person to play young Hannah in the reenactment. It didn’t take long to search for someone because Isabella Johnson lived in the same town as Hannah Hannum and she, too has mosaic Down syndrome.

Isabella has her own Mystery Diagnosis story (just not featured on the Discovery Health Channel) When Isabella was 4 months old her mom Sue noticed her pupil did not dilate in one eye and she also kept questioning the smallness of her daughter’s head.  Finally at 9 months of age she was referred to a Geneticist. After convincing the doctor to run test, it was discovered that Isabella had not only mosaic Down syndrome but also Triple X syndrome. (this is a extra copy of the X chromosome) 

Now, at 27 months old, Isabella is beginning to show some speech delays but her motor skills are doing great and she is the joy of her mom and dad’s life!

Isabella is also featured on the back cover of IMDSA’s “What is Mosaic Down Syndrome For The Professional”

For more stories of late diagnosis of mosaic Down syndrome, please visit IMDSA’s website by clicking here. 

Today was the beginning of a huge change in life as we know it! Years ago, I don’t really know when or how it happened, but all of the sudden someone finally said that it was WRONG to say the “N” word. Someone said, “Hey! That’s just not very nice!” Someone said “Enough is Enough!” And when that person began to spread around that using the “N” word was hurtful and demeaning and racist and wrong, people eventually caught on and decided that they too would no longer use that word anymore.

Now I am not naive enough to think that no one uses it. In fact, I know that many still do. But it is under hushed breath or spoken by the ones who were first called that hateful word and I suppose if you were the target of the word, then it is your prerogative to use it or not. However, I never-not even once-used that word and when I heard others use it, even as a small child, something in my heart broke and I felt very sad that people used the word at all!

So, today, is the beginning of a new era! Today, like so many years ago, people throughout the nation and throughout the world stood up and said, “Enough is Enough!” When a person uses the “R” word it is hurtful and demeaning and racist and wrong! Today people took that stand and from now on, people will continue to take the stand. 

And, today, as a person part of that movement, I want to challenge YOU!

Spread The Word To End The Word

When someone uses the “r” word, tell them why it hurts. Tell them that it is wrong. Tell them ENOUGH IS ENOUGH! Tell them that THEY can be part of history! And, then, Tell them to pass it on!

To find out more about this campaign click here .

It is time to “Spread the Word to End the Word,” and tomorrow, 31 March, events throughout the United States and around the world will make people stop and think about their hurtful and disparaging use of the word “retard.”

On Tuesday, March 31 people throughout the world will stand united to spread awareness that the time is NOW for the “r” word to end. 

Many don’t understand why this word is so offensive. However, this is considered a hate word, a racial slur, an intent to harm.

March 31 is also the last day for Early Registration for the Down Syndrome Research & Awareness Conference. On April 1st these prices will go up. Please visit our website by clicking here to find out more information.

The big news for the weekend was supposed to be all about World Down Syndrome Day. This very special day set aside to celebrate the lives of those with Down syndrome. People throughout the world who know someone with Down syndrome or have Down syndrome themselves celebrated in various ways and educated their communities about who people with Down syndrome really are.  When you google the topic of World Down Syndrome Day, you get 2,080,000 results. That is a lot of people spreading the word!

However, in the midst of all this celebration, US President, Barak Obama insulted those with Down syndrome and other special needs when making his comment about Special Olympics. When you google that, you get 3,730,000 results. Imagine if this had happened in the middle of the week! The results would have been much higher I imagine. 

It is important to remember that it doesn’t matter if you are for or against Obama being president. The fact is that he is president. A leader of a very powerful nation. Someone that many look up to. Someone who children want to be like. Someone who represents America. 

And, as a representative of America, I expect my representative to represent my feelings and my beliefs. My feelings and my beliefs are in line with what this country was founded on. That ALL people be treated equal. This does not just mean skin color, religion, or culture. This means ALL people. People with different abilities. People in wheelchairs. People with developmental delays. People who are Blind. People who are Deaf. People with extra chromosomes. People with missing chromosomes. People who are short. People who are tall. ALL people means EVERYONE.

Sure, that won’t happen all the time. Sure, there are many times when I disagree with what happens. And, yes, there is very little that I can do to change people’s perspectives.  However, I can make a difference one person at a time!

On March 31 everyone throughout the world will ban together to stop the “r” word. The Special Olympics has called for a National Day of Awareness for America to stop and think about their use of the R-word. The R-word is not “recession”, but something more hurtful and painful-”retard.”

Although Special Olympics is calling for this in America, I would like to challenge each of you, no matter what part of the world you are in to educate others in your country that words do hurt. Words do make a difference. And encourage them to stop using this word. Replace your “r” word for one much more accepting. Replace it with RESPECT. To find out more about this and purchase a Tshirt or button you can go here.

Last night, on The Tonight Show with Jay Leno, US President Barak Obama insulted millions of people throughout the world when comparing his poor bowling skills to those of the Special Olympics athletes.

Obama told host Jay Leno that his bowling score, with practice, had risen to 129.

“That’s very good, Mr. President,” Leno deadpanned.

It’s “like the Special Olympics or something,” the president replied.

The problem is, the majority of Special Olympic Athletes bowl far better than Obama’s measly 129 score. They are hard working athletes just like any Olympic athlete is and they take their sport just a seriously as any athlete does. 

A White House spokesman said the remark was not intended to disparage Special Olympics athletes, who have intellectual disabilities.

The president “thinks the Special Olympics is a wonderful program that gives an opportunity for people with disabilities from around the world,” said White House deputy press secretary Bill Burton.

The Special Olympics CEO, Tim Shriver said that Obama called him and “expressed his disappointment and he apologized I think in a way that was very moving. He expressed that he didn’t intend to humiliate this population, certainly did not want to embarrass or give anybody any more reason for pain or, just, you know, kind of, suffering I would say.”

During a Good Morning America interview, Tim Shriver said “Well I think it’s important to see that words hurt and words do matter, and these words that in some respect can be seen as humiliating or a put-down to people with special needs do cause pain and they do result in stereotypes. They do result in behavior that is neglectful and almost oppressive of people with special needs. This kind of language needs to be a teachable moment I think for our country. I would hope every parent who is at home this morning watching this show  could turn to their children and say this is a chance for us to recognize that when we talk about Special Olympics, when we talk about people with special needs, let’s make sure we talk about it in an affirming way.”

When people say things, no matter what the words or who it is about, this is something that is in their mind in the first place. Obama, no matter how hard he tries to back pedal his remarks, obviously views people in the Special Olympics as less than him. He obviously believes that people with special needs have disabilities instead of Abilities. Obama is sadly mistaken on the abilities of those with special needs-especially when it comes to bowling. But what is even more disturbing is when he goes home tonight to his two little girls, who are in the midst of all this whirlwind of celebrity status, he will continue on with his private views of those with special needs and continue to teach his daughters that these people-the ones who learn differently-are people less than them, that it is OK to make these people be the brunt of their jokes-as long as you don’t do it publicly.

Comments like those made by Obama are not “missteps” or “blunders”. Comments do not suddenly come from your mouth if they were not in your head in the first place. And when a comment comes from a powerful man that is leading a nation, what kind of example does that lead for this country and all the other countries throughout the world?