MOSAIC MOMENTS

Hi everyone,it’s Garrett again. Mom is really busy with the conference planning, so I’m writing this for her. I’m wanting to write this story to remind you how d.u.i drivers hurt other lives and for you not to drink and drive.

This is a fictional story.

Best friends stick with you to the end no matter what . You be with them, you get in trouble with them, sometimes you even live with them. But sometimes you mess up. You call them names, they get a bloody nose, or even a black eye. Well not my three best friends: Jake, Cal, and Tom. We do everything together…mostly. 

I wake up every morning praying to God for me to be safe and my friends. I ride to school and i see that my three best friends are not there. I ask one of my other friends if he saw them last week…he didn’t. They are probably still tired from our party on Friday. I don’t know how, I’m feeling good though. It was on a Friday,today is Monday. Oh well, it’s just going to be a normal day.

Something is different about this day. Usually the preps are walking and laughing over God knows what and a nerd is reading a book. None of those things were happening. Actually everyone was quiet. You would just hear footsteps. I walk in to my bi-polar teacher’s classroom and she ask for our homework. She isn’t really bi-polar, but sometimes we wonder. Like I would do homework over the weekend. Usually she starts screaming at us and tell us how bad we were. But there was no sign of anger.  She just frowned and turned away. What is going on?

School was over and me and Jake were suppose to go and play at the school, but since he wasn’t at school today he wouldn’t be able to come. I go to my other friend’s house, Dylan, to see if he wanted to chill at the school. “You wanna chill at the school since Tom , Jake, and Cal are sick?” And with the same expression as he had at school, he just frowned and shut the door. Look I’m sad that they’re gone, but come on it’s not that sad that they are sick. I’m sure they will be at school by tomorrow..I hope.

I hope that they’re here today. I wait in the classroom for them to get here, but the bell just rang. Class started and usually the teacher ask ” where is so and so” , but she didn’t this time. After she taught us what to do on the paper, I went up and asked the teacher where Cal was because she was his mom. She said,” Aw baby…” and she started to get choked up.” Come with me. I have to show you something” We were on the top part of the school and we looked out the window, and then my whole life flashed before my eyes. There I stand and I see three wooden crosses with leis on them. I run down there and it was for a fact that my best friends were killed by a drunk driver. My teacher told me how it happened. They were riding bikes to come and get me and a drunk driver hit them. Now I know why they never came and got me. I just didn’t bother calling back. I’m glad I didn’t. My face was as red as a strawberry and I could of made a river with all my tears all I thought was that the last thing I said to them was”See you tomorrow”. But I never did…

 I hope you liked my story and I hope to write y’all again and I hope that you remember to never drink and drive!

See you in a few weeks at the Down Syndrome Research & Awareness Conference in Cincinnati! I can’t wait!!!

-Garrett

Note from Mom: Wow! Garrett told me he had a story he wanted to share tonight with everyone and since I am working on conference planning and have not had time to write, I said, “Sure! Go ahead!” As parents, we hope and we wonder if we are getting through to our children. We worry that they will make the wrong choices in life and we pray that they will live through their teenage years. Garrett turned 13 just a few months ago. I cringe when I think of what I was doing at 13! I am so blessed to have the fantastic sons that I have and every now and then, they say something like this and I realize, maybe I am not doing such a bad job after all!

Don’t drink and drive people! You heard it from my son!

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

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.