Enewsletter January 2010
 
 

 

 

MCDSIG Upcoming Events

  1.  MCDSIG Meeting Friday, February 19th from 6:30-8:30pm-The meeting will be an opportunity to discuss IEP’s and to learn from parents who have school age children with IEPs, more details to follow soon.
     

  2. Save the Date-MCDSIG Spring Fling on Friday, May 7th –This is a free event held at the Trinity Lutheran Church social hall.  There will be food and entertainment.  More details will follow in the spring.
     

  3. Age Group Socials-We usually try to have a social event or events in March or April in order to provide an opportunity for families who have children of similar ages to get together.  In the past, we have had families host these get togethers in their homes for a specific age group.  If you would be interested and willing to organize and host an event, please let us know.  It could be held at your house or you could plan an event in the community.  You can choose which age group you would like to include based on the age of your child. 

 Upcoming Events

  1. Indian Creek Foundation 2010 Celebrity Event will feature Food Network Star Alton Brown The event will be held on Friday, February 19 at Calvary Church in Souderton. Proceeds from the event support Indian Creek Foundation’s programs for children and adults with intellectual and developmental disabilities. Ticket costs are $50 for adults, $25 for students (up to age 18) and $140 for a Family Four Pack (two adult and two student tickets). For the ultimate fan there are two options this year. Indian Creek Foundation will host a meet-and-greet prior to the event starting at 6pm, this exclusive engagement will allow you to get up close and personal with Alton. Tickets for the meet-and-greet, which cost $150, include access to a private heavy hors devours buffet, and preferred seating at the event. Also for $75 you can purchase a ticket with preferred seating for the event. For your $25 tax-deductible donation, this ticket will ensure that you have seating in the front of the venue. https://indcreek.org/spage.php?id=Spring_Event
     

  2. Dementia in Adults with Down Syndrome Webinar - Register for this webinar regarding the connection between Down syndrome and Alzheimer's disease. There is no fee to register, but you will be responsible for long-distance charges on your phone. The webinar, Dementia in Adults with Down Syndrome, will be held Wednesday, January 20 from 1 to 2pm Eastern, and the speaker will be Dr. Wayne Silverman from the Kennedy Krieger Institute.  
     

  3. Help a fellow affiliate receive funding by casting your vote in this online program. The Up Side of Downs of Greater Cleveland has a chance to win $10,000 in this "Power a Bright Future" program sponsored by Clorox:

    http://apps.facebook.com/brightfuture/causes/3630
     

  4. Reminder about those research surveys you've been meaning to take:

    http://www.surveymonkey.com/s.aspx?sm=L84S2xUFk5RDz9KUGppMEg_3d_3d 

    and
    https://surveys.ksu.edu/TS?offeringId=148766

     

  5. Inclusion Assembly Presented by: 
    Eric J. Pollock, Pediatric Physical Therapist-owner Little Wonders

    Eric firmly believes children need to be made aware that all kids are unique and all need friends.  Children need to be educated about Autism, Asperger's, Developmental Delays, Cerebral Palsy, Down syndrome, etc.  If a child has an understanding, they are likely to be compassionate and befriend a child that they may have otherwise, Teased/Bullied.

     

    This presentation will focus on:
    1) What are Special Needs? Provide a brief understanding of all types of disabilities, and special needs.
    2) Interactive activities to simulate the limitations of a child with Special Needs.
    3) Show a video to display that children with all abilities can smile and have fun, but some may need assistance.

    Most Importantly, this demonstration will allow students to gain a general understanding that all children are UNIQUE & SPECIAL!

    For a brochure with more information and pricing,
    please call 610-275-KIDS(5437).
     

  6. The Joseph P. Kennedy, Jr. Foundation: Public Policy Fellowship Program 2010-2011-The Joseph P. Kennedy, Jr. Foundation is seeking exemplary professionals and/or family members of persons with intellectual or developmental disabilities who are currently working or volunteering in the field of inclusive services and supports for people with intellectual and developmental disabilities for an intensive one-year Public Policy Fellowship in Washington, D.C. The purpose of the Fellowship is to prepare both early career and veteran  leaders to assume leadership in the public policy arena in their home state and/or nationally. During this one year Fellowship, the successful applicant will learn how federal legislation is initiated, developed, and passed by the Congress, as well as how programs are administered and regulations promulgated by federal agencies.  Click here to learn more.
     

  7. Nominate a Self-Advocate to be the NDSS Advocate of the Year! As you know, the Buddy Walk on Washington will take place this February.  As you also know, self-advocates are at the heart of advocacy in the Down syndrome community. 

    Self-advocates are an integral part of all legislative and policy initiatives.  To this end, NDSS would like to recognize an outstanding self-advocate who has distinguished him or herself in the area of public policy as the NDSS Advocate of the Year at the Buddy Walk on Washington this in Washington D.C. Currently, we are requesting nominations from our affiliates.  Click here to learn more.

    Join the National Down Syndrome Society for the Buddy Walk® on Washington February 24th and 25th, 2010 The Buddy Walk on Washington will be a powerful way for advocates in the Down syndrome community to:

     -Send a strong message of advocacy from the Down syndrome community about important national policy priorities

     -Meet and create positive relationships with policy makers; relationships which can become long term partnerships

     -Connect with other Down syndrome advocates from around the country

     -Learn new strategies for successful advocacy

     -Educate elected officials about the strengths and needs of their constituents with Down syndrome

    To register, call Vanessa Quick at 800-221-4602.  The fee for registration, which includes a ticket to the Reception and Award Ceremony, is $25.  The deadline for registration is January 13th.  To arrange your stay, contact the conference hotel, the Washington Plaza Hotel by clicking here or call 1-800-424-1140.  The hotel is located in close proximity to the offices on Capitol Hill.  Please let the reservation agent know you will be attending the Buddy Walk on Washington to receive the special conference rate (Single and Double rate is $199, Triple rate is $219 and Quadruple is $239). Click here to learn more about the Buddy Walk on Washington.
     

  8. Down Syndrome Education International starts new web seminars and online courses early in the new year. These new services will offer information and advice direct to education professionals, therapists and families in an interactive, engaging and convenient format.

    Our new web seminars offer detailed information and advice, tips and techniques to help teachers, therapists, and families provide effective support for learning and development.

    Convenient, engaging and interactive

    You can attend web seminars from the comfort of your own home, or without needing to leave your school. Our online seminars deliver presentations from live speakers, along with rich video content direct to your web browser. You can follow along, and join in and ask questions just like attending a seminar in person. All you need to join in is an Internet connection, a compatible browser and (optionally) a telephone line.

    Putting you in touch - wherever you live

    Our web seminars put you directly in touch with expert practitioners and researchers. Each seminar lasts for 90 minutes and includes 30 minutes for questions from participants, offering lots of opportunities to get the information and advice you want. Downloadable handouts and resources lists are also provided to seminar participants.

    ·         Find out more...

    ·         Book online today...

  9. D.A.D.S. National would like to let you know that we have started a National facebook Group for D.A.D.S. We encourage you to join the group to keep updated on important D.A.D.S. communications and other news, as well as continuing the mission of D.A.D.S. The group can be found at: http://www.facebook.com/group.php?gid=110288739806 For more about D.A.D.S. visit http://www.dadsnational.org/ or e-mail at: info@dadsnational.org or by phone at (317) 925- 7617.
     

  10. The Zachary Wallace Fund is offering $300 scholarships to children that could benefit from Therapeutic Services/Group Activities at Little Wonders Child Growth & Development Center, Inc.-We are reaching out to families with children with special needs to announce the generosity of the Zachary Wallace Fund. The Zachary Wallace Fund is offering $300 scholarships to children to participate in classes at Little Wonders Child Growth & Development Center, Inc.

    The Zachary G. Wallace Fund is dedicated to the memory of four year old Zachary Wallace, who died in January 2005 after suffering from an undiagnosed blood and immunological disease. His illness caused a spinal cord injury which resulted in extensive physical damage when he was two years old, included paralysis from the waist down and blindness. He fought for two years to walk again and did so through daily physical and occupational therapy.

    To Find Out More... Click Here.

    If you are interested in receiving this scholarship, please forward information for the child that you feel would benefit from these services to one of the following email addresses or call 610-275-KIDS (5437).

    dana@littlewondersc enter.com

    Zacharywallacefund@ yahoo.com

    Please include the following information:

    1) Child's name

    2) Child's Date of Birth

    3)  Parent/Guardian Name

    4)  Telephone number and Address of the individual you want to be contacted about the scholarship.

    5)  The Class/Service that you would be interested for this child.Note:    The Zachary Wallace Fund will need to review each applicant.
    For more information on Little Wonders Child Growth & Development, please go to our: www.littlewondersce nter.com
     

  11. MY SIBLING & ME Class led by Eric Pollock, Pediatric Physical Therapist This group encourages the interaction of children to engage in recreational activities. They will need to work together to complete obstacle courses and learn how to include each other while playing various gross-motor games. This class will help create a bond between siblings and allow them to laugh and have fun together. Come with your buddy, a sibling or friend. THURSDAY 6:30PM Begins January 14th 8 Weeks 1 Hour per Week $300.00 (this includes both children) Space is limited.  www.littlewonderscenter.com

     

 

Inspirational Stories

  1. Women with Down syndrome in the background no more
     http://www.ocala.com/article/20091212/articles/912121007&tc=yahoo
     

  2. The first day of my new school I met a boy named Ethan
    http://www.lacrossetribune.com/news/local/0493085c-d878-11de-85c2-001cc4c002e0.html
     

  3. Special Olympians Overcome Obstacles To Compete In State Championship
     http://wake.mync.com/site/wake/news|Sports|Lifestyles/story/45389/special-olympians-overcome-obstacles-to-compete-in-state-championship
     

  4. Desai gets national honor, performs at holiday concerts
     http://www.romesentinel.com/news?newsid=20091124-141322
     

  5. Chloe Comes Home
     http://www.nebraska.tv/Global/story.asp?S=11555464
     

  6. Down syndrome Births are down in theUS-http://abcnews.go.com/Health/w_ParentingResource/down-syndrome-births-drop-us-women-abort/Story?id=8960803&page=1
     

  7. West photographer wins with inspiring shot
     http://au.news.yahoo.com/thewest/a/-/wa/6547970/west-photographer-wins-with-inspiring-shot/
     

  8. Artistic project for Down Syndrome children widens in Pinar del Rio
    The artistic project Con amor y esperanza (With love and hope) aimed at teaching engraving techniques to Cuban children with Down syndrome, widens today to ...
     

  9. d Is for Dance
    by Susan Ellis Company d, a local dance troupe for young adults with Down syndrome, traces its origins to a performance for a reunion event for Special Kids ...
     

  10. t's all in the way you look at things...'
    As a mother of a child with Down's Syndrome, Shalini reached out to people who could guide her. Today, she's the force behind a support group for parents ...
     

  11. Alex's dedication inspires others
    Since 2000 Alex, who was born with Down syndrome, has worked at the video shop, making him its longest serving employee. As well as providing great service, ...
     

  12. The Ducks, their coach and a friend who inspires them all
    a 29-year-old man from Eugene whom Oregon football coach Chip Kelly has befriended and made part of the Ducks team Ford, who has Down syndrome, ...
     

  13. Brian Connors a proven leader for the Bucks
    Before and after each game, he picks up, then takes home, Andy Warner, a 52-year-old with Down syndrome, a heart the size of the borough of Dunmore, ...

 

 

Websites

  1. Cinnamon Edgar is an artist who has Down syndrome.  We met her several years ago in the Florida Keys and have since met with her for meals and other events during vacations there.  She sells her art in the form of note cards, paintings and photos in gift shops and art shows in the Keys.  She has been an inspiration to us.  Check out her work at http://www.cinnamonsfloridakeysart.com/

     
  2. Check out this website designed to help businesses learn how to be more inclusive. While the in-person resources are located in Georgia, this on-line resource has some great tips and tools that can be shared in any community. http://disabilityawarenesssolutions.com/

     

 

Education

  1. Classroom intervention trial underway

    A major new 3 year study is underway to evaluate the effectiveness of carefully targeted and structured language and reading support in ordinary classrooms for children with Down syndrome. Read more...

  2. DownsEd hosts first US education conference

    Around 400 education professionals and parents attended the first Down Syndrome Education Conference held in the USA in early November. Attendees from across North and South America praised the comprehensive, evidence-based information and practical advice provided throughout the three day event. Read more...

  3. Conference DVDs available to order

    DVDs of the first US Down Syndrome Education Conference - held last week in California - can now be ordered in advance of publication in January 2010. A 20% discount is available on all online orders received and paid before the end of the year. Find out more...

  4. Discovering new insights into autism, variability and signing in young children

    Preliminary analysis of data from ongoing studies has started to shed new light on patterns of development for young children with Down syndrome - in particular, why children progress at different rates, how they use signs and words to express themselves, and early indicators of social or behavioral difficulties, including autism spectrum disorder. Read more...

 

Research

  1.  Prevalence for Ds in certain regions-A study published this month in the journal Pediatrics reported an increase in the prevalence of Down syndrome at birth in 10 regions of the United States. The study, by researchers at the Centers for Disease Control and Prevention, found that nearly 12 babies per 10,000 born in 2003 had Down syndrome, as compared to about 9 babies in every 10,000 born in 1979. 
     

  2. Drug holds promise as potential Down syndrome cure. &&&MedPage Today (11/18, Gever) reported, "Drugs that stimulate norepinephrine signaling might allow for normal cognitive development in children with Down syndrome," according to a paper in Science Translational Medicine. Working with "animals with three copies of chromosome 16 -- a model of the chromosome 21 trisomy responsible for human Down syndrome" -- Stanford scientists discovered that "an oral prodrug for norepinephrine called Droxidopa [xamoterol] almost normalized the mice's performance on standardized cognitive function tests."

    The drug may increase norepinephrine levels, &&&Reuters (11/18) reported. Low levels of the neurotransmitter were found in the locus coeruleus among rodents exhibiting Down-like behavior. And, "when the locus coeruleus broke down, the mice failed at simple cognitive tests that required them to be aware of changes in their environment," &&&AFP (11/18) reported. "For example, they did not build nests when placed in an unknown cage, whereas normal mice typically do when placed in a new environment." But, when the rodents received "norepinephrine precursors, which are converted in the brain into the key neurotransmitter and hormone, the problem was fixed."

    But, even if the scientific community succeeds in "developing a cure," the &&&Los Angeles Times
     

  3. New Key Factor Identified in the Development of Alzheimer's Disease
    5, 2010) — Inheritance of an extra copy of the gene- β -amyloid precursor protein, APP, in individuals with Down syndrome leads to the inevitable ...

Products

  1. Bee Inspired Michigan Women Spread the Buzz-Kristin Novak had always been close to her sister, Kelly. So when Kelly’s newborn daughter Isabelle was diagnosed with Down syndrome, Kristin longed to be there to give her sister a daily hug and encouragement.  But it’s more than 300 miles between Kristin’s house in Michigan and Kelly’s home in Chicago .  So Kristin found another way. She picked out her favorite inspirational quotes, printed and rolled them into small scrolls and placed them into a special box. It was my way of being there to give her a pick me up, delivered exactly when she needed it most, Kristin said.

     Kristin and her three partners now are using that idea to spread inspirational messages even further and they’re helping the National Down Syndrome Society along the way.  Kristin and partners Sue Dickinson, Leigh Kraushaar and Marsa Truscott are on a mission to spread the Buzz. They formed the company Bee Inspired to develop Kristin’s idea for an inspirational quote box into a product that could be sold in stores. The new Bee Inspired box, which includes a years worth of hand-rolled motivational quotations, is enlightening and energizing recipients to Read the Buzz, Bee the Buzz and Share the Buzz.

     Bee Inspired will be donating a portion of their net proceeds from their Bee Inspired Signature box to the National Down Syndrome Society.  Bee Inspired boxes are the perfect icebreaker for any classroom, work place or conference. They make great gifts to the ones you love, and those around you who are going through rough times.

     The boxes can be found online at http://www.beeinspired.com/ where you can also read more about the Bee Inspired and NDSS partnership

     

Videos

  1. Nice Video about teaching and learning styles
    http://teachingcommons.cdl.edu/access/materials/videos/FWISMusicVideo.shtml
     

  2. Highlights the My Great Story Campaign and Interviews, The Traveler, Sujeet Desai.  

 


 

 

Legislation

Adoption

 

Legislation

  1. The NDSS National Policy Center Efforts Key to $11 Million for Postsecondary Programs for Students with Intellectual Disabilities NDSS led a successful effort to amend the Higher Education Act to allow eligibility for financial aid and to authorize Model Comprehensive Transition and Postsecondary Programs for Students with Intellectual Disabilities. Congress has now appropriated $11 million for the first year of funding for the model demonstration programs! Awards will go to institutions of higher education (or consortiums) for up to $1 million per year. The grants will be administered by the Office of Postsecondary Education in the U.S. Department of Education to promote the implementation of high-quality model programs and to provide a better understanding of an array of effective practices.
         In December there were a number of activities related to assessments. NDSS submitted comments to the U.S. Department of Education related to upcoming grants of Recovery Act funds to certain states for assessment projects. Policy Center staff also ensured that assessment concerns for children with Down syndrome and other intellectual disabilities were heard at a presentation by the Educational Testing Service on alternate assessments. In addition, Policy Center staff attended a meeting with top level administration officials at the U.S. Department of Education. A very small group of disability advocates and representatives of general education organizations were invited to discuss their positions on issues related to the alternate assessments on alternate academic achievement standards and alternate assessments on modified academic achievement standards.
     

  2. NDSS Policy Center Update-One exciting legislative accomplishment for the Policy Center in November was the incorporation of UDL provisions in key sections of the Learn Act (a grant program targeting effective literacy instruction) that was recently introduced in the House and the Senate. Since the UDL language is in both bills, it is likely to end up in the conference bill. Eventually, the Learn Act will become part of the reauthorization of the Elementary and Secondary Education Act (ESEA-currently NCLB). This will give us some UDL language in the reauthorization to build on.
    The NDSS National Policy Center continued to work on a range of issues facing people with Down syndrome.
    In Education, staff urged the National Assessment Governing Board (NAGB) to discontinue its policy of excluding students who take the alternate assessment on alternate academic achievement standards (AA-AAS) from the National Assessment of Educational Progress (NAEP), which is considered the nation’s report card. The NAEP is supposed to be representative of all students. In February, Policy Center staff testified before a NAGB panel on participation of students with disabilities, and recently submitted joint NDSS/NDSC comments on the panel’s report    .  
    In addition, U.S. Department of Education meetings on the ESEA reauthorization have begun. NDSS has already met with high level Administration staff about Universal Design for Learning and about concerns with eligibility criteria for the alternate assessments on alternate academic achievement standards and whether the students taking these assessments are getting access to the general education curriculum and the least restrictive environment. The Department has requested public comments on a number of polices that will affect the reauthorization and the Policy Center has responded with recommendations that would ensure high quality instruction and assessment for students with Down syndrome.
    Lastly, in education, the NDSS National Policy Center Staff was privileged to have input into legislation being drafted by staff of the House Education and Labor Committee that will ban the use of seclusion and restraint in schools.
    Regarding employment, NDSS staff met with staff of the Senate HELP Committee to discuss recommendations for the soon-to-be reauthorized Workforce Investment Act.  The goal is to ensure that this legislation has more focus on students with intellectual disabilities, including Down syndrome, finding employment at minimum wage or better after leaving high school.
    In the area of healthcare and research, NDSS continues to pursue additional co-sponsors for the Trisomy 21 Translational Research Parity Act of 2009 (S. 1762/H. 3656) or the "21 Act."
    If you are interested in joining the NDSS National Policy Center in working toward these or other initiatives, click here to learn more.  A wonderful way to advocate for people with Down syndrome and their families with the NDSS National Policy Center is by joining our Buddy Walk on Washington.
     

  3. Bill Introduced To Establish Down Syndrome Centers of Excellence
    On October 7, 2009 The Translational Research Parity Act of 2009 (S.1762) ( "21 Act") was introduced in the Senate by Senator Sam Brownback (R.KS).  Senator Sherrod Brown (D.OH) is also a co-sponsor.  A companion bill, H.R. 3656 was introduced in the House of Representatives by Cathy McMorris-Rogers (R. WA) along with Representatives Patrick Kennedy (D.RI) and Pete Sessions (R. TX).
    This Act would:
    Create at least six Down Syndrome Translational Research Centers of Excellence that provide an infrastructure for patient-oriented research, and conduct basic, clinical, and translational research on Down syndrome;
    Establish a Down Syndrome Coordinating Committee to coordinate activities across the National Institutes of Health (NIH) and with other Federal health programs and activities;
    Develop a National Down Syndrome Patient Registry and Biobank through agreements with the Centers for Disease Control and Prevention (CDC) to:
    Provide clinical care for patients with Down syndrome;
    Coordinate research and clinical activities through the Down Syndrome Translational Research Centers of Excellence with the activities of the National Down Syndrome Registry and Biobank; and,
    Create a common data entry and management system for Down syndrome patient data collection and analysis.
     Members should call their Senators and House of Representatives member to request that they co-sponsor this important legislation.    Follow this link and input your zip code to get your state-specific information and a sample letter. click here
     

  4. Obama Signs Bill Giving Disability Hate Crimes Protections
    On October 28, 2008, President Obama signed a hate crimes bill that extended protection of that bill to individuals with disabilities.  This means that it is a federal offense to commit a crime against a person based on their disability.  This would result in harsher criminal sanctions than are currently provided for by state criminal laws. 
    Under the new law, hate crimes protections will be widened to include crimes committed based on a person's gender, sexual orientation, gender identity or disability. Before passage of this bill, crimes committed based on race, color, religion or national origin were considered hate crimes.
    People with disabilities     are 50 percent more likely to experience nonfatal violent crime than those without disabilities, according to a Justice Department study released in early October. Additionally, the study found that about one in five crime victims with disabilities believe their disability was the reason they were targeted.
    NDSC and 30 other national organizations signed on as supporters of this law in a "Dear Colleague" letter sent out by Senator Mikulski.  A "Dear Colleague" letter is often used when a senator is requesting actions by other senators such as co-sponsorship of a bill. Senator Sherrod Brown (D-Ohio), Senator Benjamin L. Cardin (D-Md.), Senator Lamar Alexander (R- Tenn.), Senator John Barrasso (R-Wyo.), Senator Richard Burr (R-N.C.), Senator Judd Gregg (R-N.H.), Senator Tom Harkin (D-Iowa), and Senator John Thune (R-S.D.)  also co-sponsored the bill.
     

  5. Rosas’ Law-According to a statement issued by Senator Mikulski, "It (Rosa's law) makes nominal changes to policy in federal education, health and labor law. It simply substitutes 'intellectual disability' for 'mental retardation.' This bill will neither expand nor diminish services, rights or educational opportunities. We vetted it with legal counsel. We reached out to the very wonderful advocacy groups in this field and they concur that this legislation would be acceptable.

    "This is not the first time we've updated this terminology. Our laws once referred to boys and girls as 'feeble minded.' We thought we were being advanced when we changed it to 'mentally retarded' in the 1960s. Now, 40 years later, let's take another big step and change it to 'intellectual disability.'

    Rosa's Law replicates a law recently adopted in Maryland. Senator Mikulski first heard about the state law from Rosa's mother during a roundtable discussion about special education held in Edgewater, Maryland.  Senator Mikulski promised Rosa's mother that if the bill became law in Maryland, she would take it to the floor of the United States Senate.

    Rosa's 13 year-old brother Nick testified before Maryland legislators when the law was being considered by the General Assembly.  He stated, "Some people say they are just words, and it's not going to make a difference if we just change the words. Some say we shouldn't worry about the words, just the way we treat people. But when you think about it, what you call people is how you treat them! If we change the words, maybe it'll be the start of a new attitude towards people with intellectual disabilities. They deserve it."