MOSAIC MOMENTS

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.

Comedian ventriloquist, Jeff Dunham has made audiences laugh for decades with his circle of friends, Peanut, Walter, and Jose Jalapeno on a Stick. The majority of his act pokes fun at all races and religions, however Dunham is quick to remind his dummy counterparts that the remarks are politically incorrect and often hurtful to those hearing them. 

On Friday, Sep. 4th, Dunham and “friends” made their appearance to College Station, TX as the headliner of Texas A&M First Yell kick off. As expected, the large stadium was filled almost to capacity with the great anticipation of the laughs the evening would produce. However, the laughs faded when Jeff Dunham and his dummy Walter began a conversation that would demean those with intellectual disabilities.

Walter is depicted as a grumpy, white, old man known for his opinionated sarcasm and often puts down those of other races. During his “conversation” with Dunham, he said that Dunham was a “Retard” and made reference to Dunham riding “The Short Bus”. After Walter used the word “Retard” twice, instead of correcting Walter (as Dunham does all of his puppets when they use hurtful words) he too used the word “Retard” and laughed it off.

However, the majority of the audience was not laughing. 

The past few years, there has been a growing movement to “End the “R” Word” by advocacy leaders and youth who agree that the use of this word is cruel and offensive and considered “Hate Speech” just as any other slur. In March of 2009, the Special Olympics created a national day to “Spread The Word to End The Word” and thousands followed to make this type of language stop.

As a Jeff Dunham fan, my family and I were very excited to attend this evening of laughs. Before we left, I had reminded my 13 yr old son that some of the things said may be inappropriate for his young age. He asked me what I would do if anyone performing used the “R” word during their act. Cringing inwardly, I jokingly told him that I would rush the stage and give them a lecture on the spot! Of course, I didn’t expect the headliner to be the one to use this language. When it happened, both of my children looked at me worried what I might do.  As English author,  Edward Bulwer-Lytton wrote in 1839, “The pen is mightier than the sword”, or in this case….”the keyboard is mightier than rushing the stage”

I wrote Jeff Dunham regarding the act and why using this word is not only offensive, but also opens doors for bullying in the school and the workplace. I educated him on the growing number of advocates backing the Special Olympics to end the “R” word.

I did not ask Mr. Dunham to stop his act. In fact, I didn’t even ask him to quit saying the “R” word. Instead I encouraged him to use this as an important tool to teach his audience the importance of words and how hurtful they can become. I asked him to do what he does when any of his dummies say something that might offend someone.  I asked him tell Walter that using the “R” word is hurtful and hateful and that it is not right to use words that will make fun of those who can’t speak up for themselves.

I hope that Mr. Dunham heeds my suggestions. If you would like to suggest the same you can email him at fanmail@jeffdunham.com

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!