MOSAIC MOMENTS

I have said many times that Family isn’t just who you are born into, it is who you meet along the way. Family is someone who you share with, you laugh with, you celebrate with, and you cry with. Family is someone you can lean on when you need a shoulder, and someone you know you can depend upon to be there with you for not only your happy moments, but also the most devastating.

I am fortunate to have a family of 1000+ through International Mosaic Down Syndrome Association as well as the entire Down syndrome and mosaic Down syndrome community.

Last October, I told you about one of our family members, Gideon,  in my 31 for 21 series. Gideon was born with mosaic Down syndrome. You can read that story here. 

We all fell in love with Gideon and his infectious laughter and sparkling eyes! Our family began following Gideon and his milestones through the Youtube channel his mom, Marriah, set up to chronicle his life.  You can see all these videos by clicking here.

Then, in March, Gideon took his first steps and there was a shout of triumph throughout the world among our family because like all families, we rejoice with every step, no matter how big or small. You can read more about that here

Just weeks after Gideon’s first steps, he was admitted into the hospital with heart and lung complications. Gideon’s heart problems were more complicated than typical heart problems associated with Down syndrome. He had several heart surgeries, but continued to struggle.  You can read more about that here.

Since this time we have all been holding our breath and saying our prayers for Gideon and his mom Marriah.  Gideon has had quite a battle in his two years of life. And although a Mighty Warrior, Gideon decided that he was through fighting this battle. 

Together, our family is grieving the loss of our mighty warrior, Gideon. On Oct 7,2009, sweet little Gideon got his angel wings. As a family, we are all grieving. Not for Gideon as much as for Marriah. God has a plan that sometimes there is just no way for us to understand. I am glad that we had Gideon to show us what mattered most in the world, if only for 2 years. For such a tiny little warrior, he had the power to make a difference in hundreds of lives and we are better people for have knowing him. 

Our thoughts and prayers are with Marriah and the rest of their family. We are hoping to set up a donation fund for them, so you can help Marriah with expenses. I will be posting that as soon as it is available. 

Imagine wearing this dress to the prom this Spring! Or a Quinceanero or Sweet 16 party. Or maybe you have a formal outing or special Holiday party. But of course, you could not afford this brand new Davinci Original designed with silver embroidery and sequence. Its worth $800 and not many can afford an $800 dress!

The good news is, you CAN afford this dress! And, you also will be donating to a great cause in the process! The Soto family in Michigan has decided to raffle off this beautiful dress for only $20 per chance. Proceeds will go to International Mosaic Down Syndrome Association . The raffle ends on October 15th and you can purchase your chance to win at http://www.firstgiving.com/dress 

Even if you don’t need a dress like this, you can sell it on ebay or somewhere else after you win and imagine the profit you would make! Your donation is tax deductible, and no one can get a dress this beautiful for $20!

For the past several months, IMDSA has been monitoring the proposed US Health Care Reform. The way the current wording is, in this proposed bill it is not certain that individuals with developmental delays, medical conditions, or genetic conditions would receive health care, the therapy services that they currently receive, or adult and elder care such as assisted living or nursing care.

Our first priority is always our families. With many of our families living in the US, we realize that this is a deep concern for you. We want to assure you that we are in contact with many of the legislators and we do not plan to allow this bill to pass with its current wording.

This coming Wed, Sep 16th, a press conference will be given in Washington DC with many concerned families along with Congresswoman Cathy McMorris Rogers. In the press package that will go along with this press conference, we ask for families to include stories of their loved ones and how this bill would affect their loved ones in its current vague wording. This story needs to be by American families and must be no more than one page in Word and a picture needs to be included on the page. Because of our quickly approaching deadline, all stories must be received no later than this Sunday afternoon.

Please send your attached story to my email address at Kristy@imdsa.org with the subject line Health Care Story.

I know that many of you have questions regarding this bill. We have those same questions. We will keep you updated as we receive new information.

Many ask the question of why research for Down syndrome and mosaic Down syndrome is so important. Some argue that their child “isn’t a guinea pig” and they don’t want them to be poked and prodded and examined by every doctor that comes along. I used to be one of those parents. I was tired of everyone grabbing my son’s hands as we walked along the corridors of the pediatric wing of the hospital looking for the non-existent simian crease that would explain his extra chromosomes. I wanted him to just have a “normal” life where people didn’t look at him differently. And, NO, he wasn’t a guinea pig!

However, I think back to those 20+ years ago and I wonder if I had been more cooperative would we have more information on mosaic Down syndrome now? What about complete Down syndrome? Do my son’s mixed chromosomes hold the key to the questions we all ask about our “chromosomally enhanced” children? 

Imagine a different world. One without any research at all. Your child is born and they discover that there is a difference in their physical characteristics. That alone allows them to tell you that your child has Down syndrome. However, this is as far as they can go with their information because there is no research on Down syndrome, so there is no information. Yes, they can tell you of the other babies that were born with this. And, they can tell you that more than likely your child will not live past the age of 10, since there is no treatment or surgery for the heart defect or the thyroid condition that your baby was born with. They tell you to put your child in an institution to die and forget you ever had that tiny bundle of joy. Because since there is no research, the doctors don’t know about the treatments, the surgeries or the benefits of keeping your child at home to raise and love and teach. And, without the research, these children do die by the age of 10, if not far before that.

And, of course, without any research, a child with mosaic Down syndrome would never have a diagnosis. They would go on with developmental delays just slight enough to not get the important therapy that they need, and like the children with complete Down syndrome, most would not live past the age of 10. 

Imagine being told that your child has a genetic disorder that they know nothing about. Imagine being told that there is no treatment, no help, no ideas, and no future for your child. This is what life would be like if there was no research for Down syndrome. This is what it was like for me two decades ago when my son was first diagnosed with mosaic Down syndrome. 

Thankfully, in this new 21st century, there is research for Down syndrome and mosaic Down syndrome. Thankfully, we do know more about this extra chromosome than we have ever known before. Unlike most Advocacy organizations, we don’t look for a “cure” for Down syndrome, instead we look for “treatments” to help those with these extra chromosomes live long, fulfilling lives. 

Although we do know more than we ever have before, there is still a lot more to know about the 21st chromosome and all that it holds. Without more research, we will never know more and we will never find the right treatments to help these individuals.

But with YOUR help we can do this! 

International Mosaic Down Syndrome Association funds important research studies that focus on both complete and mosaic Down syndrome. We carefully seek out research that we know is important to the growth and development of individuals with this extra chromosome and their families. You can be a part of this cause by making your own personal page telling your friends and family why Raising for Research is so important to you. This page allows you to add pictures and videos, you own personal story, and raise money for this important cause. Raising for Research ends on Oct 31.

Please Click Here to make your page today!

International Mosaic Down Syndrome Association (IMDSA) is about to enter its 9th year as a nonprofit organization. Before IMDSA, there was very little information and virtually no support for those with mosaic Down syndrome. For parents of children with mosaic Down syndrome who are less than 9 yrs old, this is a hard image to grasp. For them, the online support group has always been in place, answers to their questions have been just an email or telephone call away. But for those parents whose children are over the age of 9, they remember what it was like before IMDSA.

As a parent myself, I was searching for information. I wanted to connect with someone who could provide support and information. For the first 14 yrs of my son’s life, I didn’t have that kind of outlet. Instead, I took things as they came. I raised my son the best I could with absolutely zero information on what mosaic Down syndrome meant for him.  Which sometimes is not a bad thing, but if I had had the information and support when he was young, I would not have felt so alone in raising him. 

This is how IMDSA was born. Several parents and I got together online and continued to talk with one another about our children. Finally, I suggested that in order for us to all have the answers that we needed, we would need a nonprofit support group that would provide not only support, but also information and research to everyone throughout the world interested in mosaic Down syndrome. We knew nothing about non-profits, we knew nothing about mosaic Down syndrome, we knew nothing about running an organization. The rest….as they say…is History!

For the past 8 years I have been serving as IMDSA’s president. I have had the honor and privilege to learn among families and professionals and have become one of the very few top-most experts in mosaic Down syndrome in the world. If you have a question about mDs, regardless if you are a parent, individual with mDs, or a professional, I can more than likely answer your question. I am glad that I have been able to help others. This is what I was born to do! This is why my son has mosaic Down syndrome-so I could help others who are now walking in the shoes that I have worn out on both sides!

In November, IMDSA will have its elections for the 2010-2011 Board of Directors. No one has ever even attempted to be nominated for the role of president for IMDSA. I think they assume that they could not do the same job that I do. Maybe they think they don’t know enough, or that they could not fill my shoes.  Maybe they think I would stop helping if I were not president. Or, maybe they just don’t realize that this position is available.

So, I am putting this out here now, in case you didn’t know.  All positions are available for nomination. If you have good organizational skills and can devote a few hours a week, if you have compassion for those with mosaic Down syndrome, if you understand that holding a Board of Director position with this organization means commitment, dedication and passion, then you could be part of IMDSA’s Board of Directors for the next two years!

There are many positions available at IMDSA! Please click here and read each position and find out which one might be right for you!

If you have questions, I have answers! Email me

Many who have followed me for a while know that I had to step back from my daily blogging during the last months of planning for our Research & Awareness Conference “Building Bridges for Down Syndrome”. All the planning and lack of sleep was worth it in the end!

We have families and professionals come as far as Australia and England and many throughout the US and Canada as well. This was, by far, our largest conference with over 350 in attendance. 

I received numerous emails after the conference saying what a wonderful time the families had and how much information they received from our 30+ speakers in the main conference. I am so glad that those who were able to attend did so! I really enjoyed meeting with everyone and getting to know the families better. 

Out of all the emails I received, there is one that has touched me the most that I really want to share with you. Many months ago, I shared a story with you about Scott and Beth and their expected baby, Elijah. You can read that inspirational story here.  

Well, Scott and Beth and Elijah’s grandparents attended our conference to gain as much information as possible about Down syndrome even before Eli makes an appearance in this world. The following was written by Elijah’s grandma, Debbie and of course…Eli.

To All

I have just returned from the Conference in Cincinnati and I would like to thank you and your entire group for the wonderful conference you had.  I learned so much and would like to take this opportunity to thank you on behalf of Eli (due in August.)

You have helped my mother, father and my grandparents so much.  Now they will have the knowledge and insight to know what I am capable of.  I have learned how to develop into a great person.  I can now eat, drink, sleep,not get lost, be safe in my home and not wander off, and best of all they will have insight from the benefit of your conference to know what I can and will be able to do.

I have wonderful parents and they are doing everything they can to make my life better. 

So please know you and your volunteers are the best.

Thank you again

Eli Miller  D.O.B.  08/25/09

The Miller’s were not the only family in attendance expecting a baby with Down syndrome or mosaic Down syndrome. I think it is wonderful when a family receives this diagnoses, even before their baby makes his or her way in the world, and are already seeking out information to help their baby become the best person that they can be.

When Tim was first diagnosed with mosaic Down syndrome, I asked “Why Me?” and “Why my son?” Now, 20 years later I know the answer to that question. It was so that I could bring information to wonderful families like the Miller’s and all the other families I have the opportunity to talk with, but also and more importantly, if my son was not diagnosed with mosaic Down syndrome, I would not have found all these wonderful families throughout the world who have taught me so much more about life than I could ever teach them!

Thanks to everyone who helped with the conference, presented, volunteered, and attended. We have, without a doubt, began Building Bridges for Down Syndrome!

Conference photos coming soon!

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

 # # #

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.