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International Mosaic Down Syndrome Association

PO Box 321, Stow, MA 01775

1-855-IMDSA-21

News

We at IMDSA feel as though it is important to those whom we serve to stay up-to-date with the latest news and information. Whenever an issue arises within our world concerning those with mosaic Down syndrome or Down syndrome, IMDSA is there to advocate for those individuals.

Additionally, we want to celebrate our individuals who are in the news!

Included here are some of the issues we have become involved in over the years.

If you are aware of an issue, event, or are concerned about governmental legislation, please contact our Legislative Officer and let us know how we can help

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  • 12 Sep 2009 6:04 AM | Anonymous
    IMDSA Position Statement on US Health Care Reform
  • 09 May 2009 6:00 AM | Anonymous
    The National Down Syndrome Congress and National Down Syndrome Society
    released a press statement in regard to People First Language in hopes to educate
    the media more about Down syndrome since the resent appointment of Sarah Palin
    for US Republican Presidential nominee John McCain.
    International Mosaic Down Syndrome Association stands with NDSC and NDSS in
    these positions and encourages all individuals throughout the community to use
    People First Language at all times.

  • 06 Apr 2009 8:00 AM | Anonymous

    Three Year Old is Diagnosed With Two Mysterious Conditions 
    Franklin, TX 3,April 2009 For Immediate Release-- On 6, April 2009 at 10pm EST, American's Discovery Health Channel's Mystery Diagnosis will air a story concerning a family who had two mystery diagnosis in one.

    2 yr old, Hannah Hannum began getting unexplained bruises throughout her body while exhibiting increasing infections that were easily explained away with childhood illness. Her mother Holly Hannum continually brought her concerns to her doctor, but it was not until young Hannah became lethargic that doctors took notice. 
    Just days before Hannah's 3rd birthday, she was diagnosed with a rare form of Leukemia-Myelodysplastic syndrome.(MDS) Although children with Down syndrome are at a higher risk of developing this, and other forms of Leukemia, young Hannah was not diagnosed with Down syndrome, so therefore the cause of the Leukemia was unknown. "We spent the next few months in and out of The Children's Hospital of Pittsburgh (CHOP) with blood and platelet transfusions , chemotherapy stays then home to recover and back for more chemotherapy and remain for her counts to recover." recants Holly Hannum "Then we began looking for bone marrow matches to give Hannah a transfusion." 

    In preparing for the bone marrow transplant, The oncology team at CHOP discovered not only the mystery behind Hannah's rare Leukemia, but also an almost fatal mistake in their treatment protocol. Hannum was diagnosed with mosaic Down syndrome . Mosaic Down syndrome occurs when a percentage of the cells have an extra copy of the 21st chromosome and the remaining cells are unaffected. Because individuals with mosaic Down syndrome have a percentage of these extra chromosomes, they are at risk for the same health problems that may occur in those with Down syndrome. Individuals with Down syndrome who have Leukemia are treated with a different protocol than those without this extra chromosome. When using the same chemotherapy treatments, the levels are considered toxic to the body and many patients will die with the wrong treatment. "It is fundamentally important to identify those with AML/MDS who have mild or normal phenotypes associated with DS for clinical diagnosis and management" The CHOP oncology team reported. Kristy Colvin, president of International Mosaic Down Syndrome Association (IMDSA), expressed her enthusiasm on the upcoming Mystery Diagnosis episode. "We at IMDSA are excited about the airing of this show. Mosaic Down syndrome is quite often undiagnosed and the average age for this diagnosis is 1-4 yrs. We hope that with this episode many more will get diagnosed to help with not only developmental delays, but more importantly the health risks associated with mosaic Down syndrome." 
    Because people with mosaic Down syndrome often do not exhibit the physical features associated with Down syndrome individuals often go throughout their adulthood unaware of this chromosome anomaly. A blood and/or skin test is required to discover these extra chromosomes and IMDSA recommends that at least 100 cells are analyzed to discover the two cell lines, instead of the typical testing that only analyzes 2-5 cells. 
    Check your local listings for all times of Discovery Health's Mystery Diagnosis episode "Black and Blue Baby" International Mosaic Down Syndrome Association (IMDSA) provides support, information and research for those affected by mosaic Down syndrome throughout the world.

  • 11 Aug 2008 6:06 AM | Anonymous
    IMDSA
    PO Box 1052
    Franklin TX 77856
    979-828-4177
    www.imdsa.org

    For Immediate Release: August 11, 2008

    Franklin TX: International Mosaic Down Syndrome Association stands united with all
    disability organizations in the United States concerning the boycott of the film “Tropic Thunder” to be released in theaters Wednesday Aug. 13, 2008.
    “Tropic Thunder” is a big-budget, R-rated summer comedy made by DreamWorks/Paramount and directed and co-written by Ben Stiller, who also stars. The movie plot centers around a group of pampered actors who are lost in the jungle while making a war movie. Stiller’s character, Tugg Speedman, is presented as a fading action hero who earlier failed in his bid for Oscar glory while portraying Simple Jack, a character with an intellectual disability. Speedman’s portrayal of Simple Jack is featured as a movie within the movie.

    A conversation in the film between actors Ben Stiller and Robert Downey Jr., use the word “retarded”, “retard” and the phrase “go full retard” in the movie over sixteen times.

    In response to language and scenes degrading to those with cognitive disabilities a national coalition of disability advocacy groups met last Wednesday, Aug 8 with DreamWorks to discuss their concerns.
    Gail Williamson of the Down syndrome Association of Los Angeles was one of the
    representatives in this meeting. “People with Down syndrome are easy targets everyday while just minding their own business because their face announces their disability. I can imagine my own son being called “Simple Jack” or “Full Retard” by someone “vulgar” as my son Blair who has DS refers to people who use this language.” Said Williamson.

    The national coalition of disability advocacy groups object to the frequent use of the word “retard” in “Tropic Thunder” and its promotional materials. Early promotion of the film described Simple Jack as a “retard” and an elaborate DreamWorks marketing website that was taken down last week in response to complaints carried the tagline “Once upon a time … There was a retard.”

    Although DreamWorks agreed to take the scenes of “Simple Jack” from their trailers, the words used in the film will still be present upon the release of this film Wednesday Aug 13.

    Kristy Colvin, president of International Mosaic Down Syndrome Association (IMDSA) joins with this nationwide boycott. “Words such as these used in this film allow for others to bully those with developmental disabilities.” Said Colvin “DreamWorks must understand that words do hurt and to use these words and portray a character with developmental disabilities in this manner is not only highly offensive, but also sends a message to the community that people with disabilities do not matter.”

    International Mosaic Down Syndrome Association stands with thousands of others who plan to picket this film on Wednesday in hopes to send a message to the community that words such as these are offensive to the disability communities and will not be tolerated.
  • 12 Jun 2008 6:12 AM | Anonymous

    Christi and Austins Engagement Notice

    Thanks Mum Judie for Sharing...Congratulations Guys!!!!!


  • 28 Feb 2008 5:29 AM | Anonymous

    Catholic New York - "Pass it On" - February 28, 2008

    'Pass It On' Students at Mahopac school turn small sums into big lesson on giving ~ By JULIANN DosSANTOS

    When a fifth-grade teacher at St. John the Evangelist School in Mahopac gave each student in her class $10, she showed them more than the value of a dollar.

    The teacher, Mrs. Valerie Nicholls, gave each of the 20 students in her class $10, and an assignment-do something for a needy cause. "I want them to realize how important stewardship is for later on in life," she said.

    The ongoing project is called "Pass-It-On."

    One student wrote a letter to Build-A-Bear, and received a box of bears, which she then donated to Birthright, an organization for single mothers and mothers in need.

    Another student sold "dress down days" and raised $775 to donate to the Mosaic Down Syndrome Association .

    Yet another sold chocolate lollipops for Valentine's Day and donated more than $300 to the American Heart Association .

    Two students, Matt Witkowsky and Jarett Rooney, held a coat drive for Open Arms homeless shelter in White Plains. They collected 293 coats for men and women. "We picked coats because it was going to be really cold in the winter," Matt said. The two students asked for donations around their neighborhood, at their school and church, and at the local chiropractor.

    They also received some $100 in donations for the shelter. "I learned that not only do you have to do this for a project, you can do it and do it all your life and pass it on like the project says," Matt said. "We had a really fun time doing the project and it was really nice because we got to help others and do really nice things," he said of his class.

    Mrs. Nicholls told CNY that the response from the students was overwhelming. Students were responsible for taking charge of the project on their own. They wrote letters to various organizations and came up with projects they could do on their own. "They were so enthusiastic," she said. Principal Paul Henshaw said, "As a school we are trying to get the kids to think more of service to others. We appreciate their creativity for coming up with concepts that they could manage." Mrs. Nicholls said she came up with the idea after watching an episode of "Oprah" on which each person was given $1,000. From there, she said, the idea just took off. "It's unbelievable how generous people are and how the children came up with all these ideas," she said.

    "They've really done a great job."

  • 11 Sep 2007 6:24 AM | Anonymous
    Local News Cincinnati.Com » Community Press & Recorder » Annual Buddy Walk is Saturday Tuesday, September 11, 2007

    Get your walking shoes on for the Down Syndrome Association of Greater Cincinnati's sixth annual Buddy Walk.
    The Down Syndrome Association of Greater Cincinnati's Buddy Walk (DSAGC) will be at 9 a.m. Saturday, Sept. 15, at Newport on the Levee, a local family entertainment complex. 
    It is a one mile walk and the community is welcome to participate in this event.
    This year, there is a new partner in town walking for awareness and fund raising for two research scholarships.

    International Mosaic Down Syndrome Association (IMDSA) will partner for the first time with DSAGC and walk under the name "Team Mosaic." IMDSA is a non-profit organization designed to provide support, information and research to those touched by mosaic Down syndrome. Mosaic Down syndrome is a rare form of Down syndrome where a percentage of cells have the extra 21st chromosome that causes Down syndrome and the remaining cells are unaffected. About 100 to 200 individuals are born in America each year with mosaic Down syndrome. Because of the rarity of this birth defect, there is very little known about it or how it can affect an individual.

    "Since our members are spread across the world, it is difficult for us to have a large fund-raising event. The best idea seemed to be to collaborate with an organization that already had an established fund raiser. Since the research we will sponsor also benefits those with Down syndrome, we looked to DSAGC and its well-known Buddy Walk," said IMDSA research chair Kristen Lipscomb Sund.

    "Our goal is to raise money for two $500 scholarships to support master's level research projects on mosaic Down syndrome/Down syndrome," she said.
    Last year alone, more than $6.5 million was raised nationwide for local and national education, research and advocacy programs through the Buddy Walk program.
    IMDSA invites everyone to become a part of Team Mosaic. For more information on how you can become a walker for the team or become a "Virtual Walker," visit IMDSA's Web site www.imdsa.com and click on Buddy Walk or give IMDSA a call at: 1-888-MDS-LINK. All financial donations are tax deductible and can be sent online or by mail to: IMDSA, P.O. Box 1052,
    Franklin, TX 77856.

    IMDSA will give a portion of all donations to the DSAGC for their generosity in letting them join the walk. For more information on the 2007 DSAGC Buddy Walk go to buddywalk.kintera.org
  • 08 Sep 2007 6:27 AM | Anonymous
    Little Dylan Loden of Austin, Texas probably doesn't realize how his photogenic baby face is making a big impact in raising awareness for mosaic Down syndrome.
  • 29 Aug 2006 6:19 AM | Anonymous
    Franklin TX, August 29, 2006- International Mosaic Down Syndrome Association (IMDSA) was stunned to hear the news that the radio station Q92.5FM outside of Canton, Ohio has a regularly aired program titled “Mongoloid Mike.”
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