Enewsletter 25-Mar-2008
 
 

 

 

MCDSIG Business

  1. Age appropriate socials - The baby/toddler social is Saturday, March 29th at 5:30pm.  The school age social is still looking for a home/place.  If someone in the school age group would like to open their house or would like to be a key contact for a social that meets at a public place, please let us know and we can help coordinate it.  Remember the best information comes from our families.
     

  2. Save the Date - Spring is here and ourSpring Fling will be here before you know it.  Mark your calendars for May 9th 2008.  This is our social party in the church's gym.  We typically have pizza and hoagies.  We are still looking into the entertainment.   Details will follow. 
     

  3. World Down Syndrome Day - was Mar 21st.  That magic number combination of 3 and 21 is symbolically captured in March 21st.  To celebrate this, Rose submitted this editorial to the Lansdale Reporterl.  We will definitely do the eat out again next year, this year it happened on a holiday weekend and we didn't want to compete with it.  We had so much fun at the Olive Garden last year.
     

  4. Mission Statement Change:  Our current mission statement will have a section added to it that also captures our charitable giving.  Our group donates to the Tri 21 center, NDSC and NDSS.  With the current state of our funds, we would like to expand our giving to DS families in need and other groups that specifically target DS.

Upcoming Events

 

  1. CHOP 5th Annual Trisomy 21 Symposium is April 12, 2008

     

  2. (this is late, but informative) World Down Syndrome Day is 3/21/2008! http://www.worlddow nsyndromeday. org/

    Down Syndrome International (DSI) has officially earmarked 21 March as World Down Syndrome Day (WDSD). The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome. This year the theme for 21 March 2008 is "Aim High Enough" to continue creating awareness about Down syndrome and promote acceptance of diversity. Visit the web site for information:  http://www.worlddownsyndromeday.org/

    Individuals and related organizations worldwide are encouraged to observe the WDSD together with the community in an appropriate manner.     Singapore is holding a kite design and flying competition that is in line with the "Aim High Enough" theme. The International Mosaic Down Syndrome Association will be celebrating with "Genes Day" -- check out the details here: http://www.imdsa.com/genesday.htm. The National Down Syndrome Society (NDSS) in NYC is holding a special event celebrating the paperback release of "Count Us In," a book written by two men with Down syndrome. Check out the NDSS web site for more information about the NYC event at Barnes & Noble:
    http://www.ndss.org/index.php?option=com_content&task=view&id=2007&Itemid=233

     

  3. National Down Syndrome Congress 36th Annual Convention: "We're More Alike Than Different"
    Date:    July 11-13, 2008
    Place:  Seaport World Trade Center, Boston, MA
    Online registration is now open for the NDSC Convention. Visit the web site for complete information: https://www.ndsccenter.org/convention08/

     

  4. The Arc of Montgomery, Berks & Bucks Counties Gala Event
    Scheduled date: April 25, 2008 - 6:30 PM to 11:00 PM
    1. The Arc of Montgomery, Berks & Bucks Counties along with it's related corporation: Marc Children's Service and Marc Advocacy Services will be hosting a Monte' Carlo Night. All proceeds raised benefit The Arc with the work they do to support families and children with special needs through direct therapeutic activities, free advocacy services and trainings to the community.

      Please join us on April 25th, 2008 for a fun filled evening at the Radisson in King of Prussia from 6:30 PM - 11:00 PM.

      Price is $40.00 per ticket which includes FREE babysitting for children ages 6 months to 13 years old as well as: hot and cold Hor d'oeuvres, desserts, non-alcoholic beverages(cash bar) and plenty of "funny money" to gamble and play the casino games. We will have Texas hold'em, blackjack, roulette, poker, craps, a money well and slot machines. Even if you don't know how to play the games our dealers will be happy to teach you! At the end of the evening there will be prizes for the top three winners. Everyone else will be able to trade in their "winnings" for raffle tickets to win wonderful prizes! Come out and support The Arc!

      For more information contact: Frances Crowe
      The Arc of Montgomery, Berks & Bucks Counties: 610-265-4700, ext. 225
       

  5. Autism Awareness Nite at the Philadelphia 76ERs !!!
    Saturday April 5, 2008
    6:00pm Spotlight Concourse for Autism Awareness
    7:00pm Game vs.     Atlanta Hawks
    Family Accommodation Area during the game for anyone needing a break. 
    To purchase tickets, please contact -
    Katie Delagol   76tickets@gmail.com  or  215-624-6214
    Lower level end - sections 106, 107  $36  (30% off ticket price)
    Upper corner mezzanine - section 209a    $25  (save 20%)
    all proceeds go to Autism programming plus raffles, resources and kid’s activities

     

  6. The Arc of PA: Annual Systems Advocacy & Government Affairs (SAGA) Day
    Date:    Tuesday, April 8, 2008
    Time:    9:00am-7:00pm
    Place:   Holiday Inn Carlisle, 1450 Harrisburg Pike,     Carlisle, PA, 17015

    The Arc of PA will hold its annual "Systems Advocacy & Government Affairs" Day in April. The day prior will be its annual membership meeting. All meetings (except legislative reception) to be held at Holiday Inn Carlisle, 1450 Harrisburg Pike, Carlisle, PA, 17015 (Rt 11/PA Turnpike Exit off I-81). 717-245-2400. Block of rooms held under name "The Arc." SAGA Day cost $5 for Arc members; Non-members $15 (free one-year Arc membership with payment). RSVPs required for SAGA Day & Reception (RSVP to Gwen Adams 1-717-234-2621 or gadams@thearcpa.org) Space is limited for SAGA Day sessions so please RSVP as soon as you can. See the attached PDF for additional information.
     

  7. Eastern PA Down Syndrome Center Annual Conference: "Home, Health & Future VII"

    Date:   Saturday, April 5, 2008
    Time:    8:15am - 3:30pm
    Place:  DeSales University, Gerald White Pavilion,     2755 Station Avenue, Center Valley, PA

    A variety of speakers on great topics. A self-advocate conference for teens and adults will also be running concurrently. Eastern PA Down Syndrome Center Conference

     

  8. Summer Social Skills Group     A summer social skills program for ages 6-21 with social pragmatic delay, Asperger’s Syndrome, PDD, ADD, ADHD or non-verbal learning disability.

    Dates: June 24, 26, July 1, 3, 8, 10, 15, 17

    Location: Sanctuary United Methodist Church North Wales, PA 19454

    Time: 60 minute small group sessions will run from  8:30 AM- 4:00 PM.

    Contact: Jeanne Kelly at tjkelly50@comcast. net or Barbara McNamara at phillymacs@hotmail. com

     

  9. NDSS-New Frontiers of Down Syndrome Research with Roger Reeves, Ph.D. -the inaugural event of the National Down Syndrome Society Education Series

    Wednesday, April 16, 2008  ~  5:30 -7:30 pm
    The Torch Club, 18 Waverly Place, New York City-Reservations required. Please reply to bfinkelstein@ndss.org to confirm your attendance or call 212.763.4367. Space is limited. There will be no solicitation of funds. For more information please visit     http://www.NDSS.org
     

  10. Presentation of the Premise Alert System created by Police Chief Kevin C. McCarthy Sr. & Susan F. Rzucidlo on Monday April 7th at 11 a.m. - More information about the program can be found on their website. www.papremisealert.com-What started out as a Police Officer’s response to help one family in his community has developed into a new statewide initiative that will be introduced to the Commonwealth in a ceremony in the Capitol Rotunda.  All are invited and encouraged to attend. Briefly, the Premise Alert System provides a uniform way for individuals living with disabilities or challenges to notify Police about any special need they may have before there is a crisis. It links already existing agencies and organizations to work in a new way that benefits all parties, without adding significant cost (costs are copying the form and information management) or an additional layer of government. It is a statewide cross-disability program that has the ability to benefit all communities, rural, urban, poor and wealthy alike regardless of available technology. The Premise Alert System has a broad scope of impact that has been proven to be a win-win for everyone. It serves every age and crosses all racial and economic barriers. It can be run in every geographic area without compromising the system. It can assist during a personal or community crisis or help locate an individual with a disability who may have wandered from home. It assists local Emergency Management Services and First Responders in being more effective and knowledgeable about the community they serve.

 

Inspirational Stories

  1. Couple with Down syndrome win contest, exchange vows
     
  2. Their Special Talent
     
  3. Wrestler Takes a Shot at the Impossible
     
  4. Down syndrome support growing
     
  5. Can-do attitude helps teen meet challenges
    Amidst of a special year at Marlboro High School, one that is filled with the typical activities some high school seniors may take for granted, but not this young man. Anthony, 21, has Down syndrome, but he has not let that hinder his senior year.
     
  6. House Down Syndrome Day
    A Kansas lawmaker brought his grandson to the statehouse today to raise awareness of down syndrome. Overland Park representative Ronnie Metsker introduced Harrison to the legislature this morning.
     
  7. Married and living on their own
    Shawn and Heather O'Grady have a lot in common. They both love to dance. They share an infectious laugh. They both have Down syndrome.
     
  8. Actor Chris Burke and the National Down Syndrome Society to Ring the NASDAQ Stock Market Closing Bell
     
  9. World Down Syndrome Day is Friday
    BENTONVILLE — The call came on Oct. 27, 2004. The few words — your unborn baby has Down syndrome — changed Stacy Reed’s life in ways she couldn’t imagine. (Benton County Daily Record)
     
  10. Hockey Players Share Skills Through Service
     BYU hockey players taught game skills to kids with Down syndrome Saturday morning. Player Adam Farero led stretches before bringing other players, volunteers, parents and children together for a team huddle and cheer.
     
  11. UPDATE: Winless wrestler named most inspirational
    Tom Berg's Orange County Register story on Cullen Fitzgibbons a few weeks ago brought many who read it to tears. Well, here's an inspirational update about the young man with Down syndrome who loved being a part of the wrestling team at Los Alomitos High School.

Education

  1. Newsletter: "Wrightslaw -- Crisis Management and Long-term Planning; How to Disagree with the School"
     http://www.wrightslaw.com/nltr/08/nl.0219.htm
     
  2.  Newsletter; "Wrightslaw -- Transition & Planning for the Future; Choosing a School, Finding Financial Aid"
     http://www.wrightslaw.com/nltr/08/nl.0304.htm
     
  3. Newsletter: "About.com 'Parenting Special Needs' -- Special Education Transitions"
     http://specialchildren.about.com/od/specialeducation/a/transitioneipk.htm
     
  4. No Child' law gives disabled new opportunities
    WASHINGTON -- As ninth-grader Stephen Sabia reads "Romeo and Juliet" and studies the Holocaust and World War II for honors history and English, his mother credits an important ally in her years-long drive to secure the best education possible for her son with Down syndrome: the federal No Child Left Behind law.
     
  5. 'A natural transition'
    Having a brother with Down syndrome prepared her for a career serving kids with special needs. Class: I teach eighth-grade history and reading at Deltona Middle School.

Legislation

  1. Special Education Bills: Co-sponsors Needed
    Two public policy priorities of The Arc of Pennsylvania in the area of special education are the following:  1)  Make the special education dispute resolution process independent and fair to parents, and 2) Remove the burden of proof in special education disputes from parents and place it onto school districts. The time is now to urge your state representative to contact the Speaker's Office to sign on to these two pieces of legislation as original cosponsors before they are introduced. Visit The ARC of Pennsylvania's web site for an online form that you can fill out and submit electronically. http://capwiz.com/thearc/issues/alert/?alertid=11053406&queueid=1767465216

Raising Awareness

  1. National Down Syndrome Congress Launches Five New Public Service Announcements for "More Alike Than Different Campaign"
    The spots feature four adults with Down syndrome selected to speak for our community via an exhaustive national talent search. Each tells, in his or her own words, a piece of their story. They talk of career ambitions, jobs, their homes, families and loves. You can view them by visiting the NDSC web site:     http://www.ndsccenter.org/morealike/videos.php

 

Prenatal

  1. Committee OKs bill to limit Down Syndrome 'genocide'
    A Senate committee has passed legislation that could serve to reduce the killing of unborn children diagnosed with Down syndrome or other conditions.
     

  2. Senators join in effort to reduce abortions tied to Down syndrome
    Susan May considered terminating her pregnancy when tests confirmed that the 5-month-old fetus she was carrying would become a child with Down syndrome
     

  3. Senate HELP Committee Approves Bills Related To Prenatal Care Funding, Down Syndrome
    The Senate Health, Education, Labor and Pensions Committee on Thursday approved by voice vote bills related to the reauthorization of the Healthy Start program and a second measure related to Down syndrome, CQ HealthBeat reports. The Healthy Start program directs federal funding for prenatal care to areas of the country with high infant mortality rates. 

 
Research
 
Study: Alzheimer's disease may be a form of Down Syndrome A new study suggests the two may be linked through the cell division process.
 
 
Books
 
Father, son wrote book on Down syndrome   At 52, Tom Lambke still enjoys the little things in life, and it's all thanks to his 26-year-old son, Bryan.  
 
 
Movies


Documentary on Mount Airy's 'little rebbe' to open here -

His voice is deeper, he stands taller, he shaves regularly, and he's a high school student now. But Lior Liebling, 16, still loves to pray - and to sing loudly, off-key, with singular intensity. Liebling, who has Down syndrome, still lives up to the nickname of "the little rebbe," or rabbi.

 
Local's Down syndrome documentary gets HBO boost

Local (not local to us) filmmaker Alexandra Codina has signed a ''first-look agreement'' with HBO for Monica and David, a full-length film that explores the marriage of two adults with Down syndrome, one of them Codina's cousin.