Feb 2009 Enewsletter

 
 

 

 

MCDSIG Upcoming Events

  1.  MCDSIG Meeting on Friday February 20th from 6:30-8:30-As suggested by a group member, this meeting will be an opportunity to share ideas and information about IEP’s.  If you have any input or advice on the IEP experience that you would like to share or have questions you would like discussed at the meeting, please email us so we set up an organized discussion for the meeting.  This will be a great opportunity to learn from each other.  Childcare will be provided.
     

  2.  MCDSIG 3/21 Eat Out-March 21st is World Down Syndrome Day because of the significance of the numbers 3 and 21.  We will be organizing a lunch event on that day (Saturday) in the Lansdale area.  All interested families eat at a restaurant at the same time that day to help raise awareness about Ds.  The details of the day will be finalized soon.
     

  3.  MCDSIG Spring Fling Save the Date-The Spring Fling will be on May 8th from 6:30-8:30 at the social hall of the Trinity Lutheran Church in Lansdale.  This is a free event and there will be food and entertainment provided.

Upcoming Events

  1. Annual Disability Mass, sponsored by the Respect Life Office, Department for Pastoral Care for Persons with Disabilities, Archdiocese of Philadelphia.

    Mass will be held on:
    Sunday, March 22, 2009 - 2:30 PM.
    (Also celebrated in sign language)
    Reception follows

    Location:
    The Cathedral Basilica of SS. Peter and Paul
    18th St. & Benjamin Franklin Parkway
    Philadelphia, PA

    Cardinal Justin Rigali, will be the principal celebrant and homilist.

    We encourage you to invite family, friends and other interested persons. See attached invitation flyer. Please RSVP for the reception.

    Your assistance is needed in spreading the word about this beautiful event!
    If you have any questions, need additional information, or wish to volunteer your services for this event,  please contact Janell Lavender or Sr. Kathleen Schipani at 215-587-3913.
    http://archphila.org/evangelization/resplife/pcpd.htm

     

  2. The Pennsylvania Department of Education, Bureau of Special Education is pleased to announce the following videoconference opportunity:

    Title:  De-escalating Potential Behavior Problems: Specific Strategies for Effective Classrooms
    When: March 19, 2009
    Where:  PaTTAN-King of Prussia, Various downlink sites across the state
    Time:   4:00 pm - 6:15 pm
    Presenter: Carrie Frohnapfel and Jenn Goldbloom
    Target Audience:  Special educators; Regular educators; Intermediate Unit Training and Consultation staff; Administrators; Guidance counselors; School psychologists; Psychologists

    You may register directly on-line by visiting www.pattan.net and entering the Registration On-line page. 
    Content Related Information and Questions:  Carrie Frohnapfel at 800-446-5607 ext. 6854 or cfrohnapfel@ pattan.net

    General Registration Information and Questions:
    Kristen Olszyk at 800-446-5607 ext. 6848 or kolszyk@pattan. net

    Directions to:
    PaTTAN King of Prussia:  http://www.pattan. k12.pa.us/ about/KOPDirecti onsandAccomodati ons.aspx

  3. PEAC ANNUAL MEETING 2009 -WWW.PAEDFORALL. ORG — (267) 232 0570 Join us to call for inclusion in Pennsylvania!

    • Open to everyone interested in inclusive education
    • Hear updates directly from the PA Department of Education, Bureau of Special Education
    • Learn from the co-principals of fully inclusive and award-winning     Twin Valley Middle School
    • Conduct an assessment of inclusion in your school and learn how to make improvements
    • Experience a district-wide panel discussion on inclusion
    • Enjoy a light breakfast, networking opportunities, and Q&A time
    Saturday, February 7, 9:00 am — 1:00 pm
    Live @ PaTTAN     King of Prussia
    *Snow Date: Saturday, February 14
    Live Video @ PaTTAN Harrisburg, PaTTAN Pittsburgh, and IU5
    To RSVP or get more information, please contact Lindsey Walker at lwalker@paedforall. org      or (267) 232 0570.

  4. PA Statewide Independent Living Council: Power Through Knowledge Conference

    Date:    April 2-4, 2009
    Place:  Harrisburg Hilton, Harrisburg, PA  17101
    Pennsylvania Statewide Independent Living Council (PA SILC) is a governor appointed leadership organization for people with disabilities. A nonprofit, cross-disability, consumer controlled organization, PA SILC is dedicated to using its collective power and legal mandate to develop and secure public policies that ensure civil rights and expand options for all people with disabilities in all aspects of life. Independent Living empowers people to take control over their own lives. For event details, workshop overviews and registration, visit the following web site: http://www.goluxor.com/PTK/ index.html

  5. Pennsylvania Department of Education Annual Conference Getting Results: "Educating Students in a Standards-Aligned System"

    Date:    March 19-21, 2009
    Place:      Hershey Lodge and Convention Center, Hershey, Pennsylvania

    This annual, statewide conference highlights national presenters discussing a range of effective interventions meeting the educational needs of all students. The hotel registration deadline is March 5, 2009.  Conference participants may register for rooms at the Hershey Lodge and Convention Center at 717-533-3131 or 800-437-7439.  The cost of rooms is $128.00 per room per night. You may register directly on-line by visiting www.pattan.net and entering the Registration On-line page.  The deadline for conference registration is April 1, 2009.  The cost of registration is $125.00.

  6. CHOP Trisomy 21 Symposium is April 4, 2009 (Philadelphia, PA)
     

  7. EPDSC Home, Health and Future VIII is March 21, 2009 (Trexlertown, PA)

  8. Sensory Processing Disorder Foundation is offering online classes from Lucy Jane Miller, author of Sensational Kids, with special guest Carol Kranowitz, author of The Out-of-Sync Child. It’s not too late to save 20% on e-Learning tuition!

    Sign up today to study SPD online with the SPD Foundation and SAVE!
    $199     — Pre-launch through February 2009
    $249 — Standard tuition beginning March 1, 2009
    http://spdfoundation.net/

    Dr. Lucy Jane Miller will also be in New York City addressing the topic of “Sensory Modulation Disorder: Sensory Over-Responsivity” at the spring Sensation and Emotion Network Conference on March 2nd and 3rd from 8am-5pm at the Park Central Hotel Ballroom. For more information visit http://spdfoundation.net/ 
     

  9. The National Down Syndrome Society is pleased to announce that registration for the 2009 Buddy Walk® Conference is now open!   Visit the Buddy Walk® Conference website at http://buddywalk.kintera.org/buddywalkconference for more information.

    The 2009 National Buddy Walk Conference will be a celebration of the enormous success of the Buddy Walk program during the past 14 years and a chance for the Buddy Walk community to come together to share and learn from one another and to hear directly from NDSS leadership and the staff who work on the Buddy Walk regarding the future endeavors of the program. Should you have any questions, please feel free to contact Rebecca Switalski at rswitalski@ndss.org.
     

  10. The Pennsylvania Department of Education, Bureau of Special Education is
    offering the following training opportunity for parents, families and caregivers:
    "Transition:  It's Not Just for Kids - Parents Need A
    Transition Plan Too!
     

    1. Session 1 - You Can't Move Forward Until You Move Backwards
      March 3, 2009
      Webinar and/or phone conference call
      12:00 PM-1:00 PM or 7:00 PM-8:00 PM

      Description:
      The transition process focuses on preparing you and your son/daughter
      for life after school. It is never too early to start this process!
      Join with other families to learn why transition involves everyone.
      Begin now to plan for a successful, fulfilling future at home, school
      and in the community.
       

    2. Session 2 - It's a Brave New World:  An Introduction to Secondary
      Transition
      March 24, 2009 -
      Webinar and/or phone conference call
      12:00 PM - 1:00 pm or 7:00 PM - 8:00 PM

      Description:
      How do I make sure my son/daughter's IEP beginning at age 14 is a Road
      Map to a successful and fulfilling future at home, school, and in the
      community? Learn how transition goals drive all the sections of the IEP
      and determine what your child is doing in school.  We will review sample
      IEPs and resources during this session.
       

    3. Session 3 - The GPS of Secondary Transition
      April 4, 2009 Videoconference
      9:00 AM - 12:00 PM
      12:00 PM - 1:00 PM - Brown Bag Discussion (optional)
      PaTTAN Harrisburg
      PaTTAN King of Prussia
      PaTTAN Pittsburgh
      Other downlink sites across Pennsylvania

      You may register directly on-line by visiting www.pattan.net and
      entering the Registration On-line page. 

      For information on program content, contact Michael Stoehr,
      800-446-5607 ext. 6864 or 412-826-6864 or mstoehr@pattan.net

      For general registration information, contact Mary Gordon at
      412-826-6871 or mgordon@pattan.net.
       

  11. Ups & Downs & All Around is a support group in Philadelphia for individuals with Down syndrome or with physical and cognitive delays.  (This is a new group that is getting off the ground and we encourage you to check them out and we look forward to working with them in the future!)

    They will be having the First Down syndrome Awareness Day at the Philadelphia Zoo. This great event will take place on September 12, 2009.       
                             
    In addition to the working with the Philadelphia Zoo, they are working with The     World Champs the Philadelphia Phillies, for a Down syndrome Awareness Day in 2009.  This event will take place on April 27, 2009.

    They are having a beef and beer fundraiser on World Down Syndrome Day 3-21-09, in northeast Philadelphia .  The location is at 9700 Frankford Avenue which is St Katherine of Siena school gym. This location is not hard to get to from I-95 and the Roosevelt blvd. it is $25 a person and from 7-11.

    In addition to the beef and beer, Slacks Hoagie Shack (slackshoagies.com) will give Ups & Downs & All Around a portion of any sales on Sunday, February 8, 2009.  As long as UDAA is mentioned.

     For further information regarding events, the group, or donations please contact Jennifer Bonawitz at 215-990-8730 or email jh5366@comcast.net.  Visit the website at www.freewebs.com/upsanddownsandallaround
     

  12. Variety Club Celebrity Bartender Night -This annual fundraiser features your favorite local celebrities and Philadelphia Athletes, stepping behind the bar to mix cocktails for a good cause.

    Join Variety - The Children’s Charity for this fun event, to be held at the Public House, located at 1 Logan Square in Philadelphia.

  13. The 6th Annual Conference on Best Practices in the Education of Children
    with Down Syndrome     -March 19, 20, 21, 2009

    C.W. Post Campus of Long Island University
    Hillwood Commons
    720 Northern Blvd.
    Brookville, New York 11548

    Experts in the Fields of Physical Therapy, Challenging Behavior, and
    Special Education. Go to www.dsafonline.org for more info.

Legislation and Government

  1. Obama releases agenda for disability concerns

    Coming on the heels of his inauguration, President Barack Obama released Jan. 20 his agenda for ensuring equal rights for Americans with disabilities.

    The plan addresses four issues:

    • Education: Obama and Vice President Joe Biden call to fund the IDEA, early intervention for children with disabilities and universal screening. They "will also authorize a comprehensive study of students with disabilities and issues relating to transition to work and higher education."
    • Health care: Obama and Biden seek to restore and enforce the ADA, fund the Genetic Information Nondiscrimination Act of 2007, improve mental health care, and provide "affordable, accessible health care for all."
    • Employment: The administration intends to impose new laws "that require the federal government and its contractors to employ people with disabilities," offer accommodations to private-sector employees to hire people with disabilities, support small businesses owned by people with disabilities, and encourage "employers to use existing tax benefits to hire more workers with disabilities."
    • Residences: Obama and Biden intend to enforce the Community Choice Act of 2007, streamline the Social Security approval process, and create a "national insurance program to help adults who have or develop functional disabilities to remain independent and in their communities."

    Obama and Biden also specifically addressed autism and provided three key points of action:

    • Boost funding for autism research, treatment, screenings, public awareness and support services.
    • Improve lifelong autism treatments, interventions and services.
    • Enforce universal screening of all infants and rescreening for all 2-year-olds.

    For more information, click here.
     

  2. NOEWAIT is an organization working to end the wait list for individuals with disabilities.  To learn more, visit HTTP://WWW.NOEWAIT.NET .  NOEWAIT uses a listserv to discuss and share information by its active participants.  You can join by emailing noewait@noewait.net. You can also learn more at http://www.change.org/ideas/view/fully_fund_medicaid_waivers_for_the_developmentally_disabled .
     

  3. Changes at MARC-Due to the state budget crisis, the Arc of Montgomery, Berks and Bucks can no longer fund the Adult Advocate position.  Adult Advocacy requests should be directed to the main switchboard at 610-265-4700 or to info@ marcpa.org

Education

  1. Scoop Essentials: Your IEP Questions Answered Article- http://www.disabili tyscoop.com/ 2009/01/26/ iepbootcamp- your-questions/ 1848/ ...
     

  2.  University of Arizona Regents' Professor Lynn Nadel began pursuing questions about the impact of Down syndrome on his research on the hippocampus in the early 1980s. That effort has led to development of standardized tests that will help assess the cognitive abilities of those with the disorder and lead to more targeted therapies. Standardized test battery to aid those with Down syndrome
     

  3. Camp/ESY Resources (These sites are shared courtesy of Autism Support Network, Bucks County:)

    CAMP RESOURCE.com -- online summer camp directory
    http://www.campreso urce.com/ camps/special_ needs_summer_ camps.cfm

     SUMMER MATTERS, Valley Forge Educational Services
    http://www.summerma tters.org/ 62.html> http://www.summerma tters.org/ 62.html

    METRO KIDS, Special Needs Camps 
    http://www.metrokid s.com/april08/ specialneedscamp s0408.html

    MY SUMMER CAMPS -- online summer camp directory
    http://www.mysummer camps.com/ camps/pennsylvan ia-other- special-needs- camps.html 

    FAMILY VILLAGE -- online directory
    http://www.familyvi llage.wisc. edu/Leisure/ camps.html

     SUMMIT CAMP
    http://www.summitca mp.com/ 

    Lastly, VARIETY CLUB, Montgomery County, (Worcester), PA has ESY and vocational camp programs for ALL levels of disabilities, summer day programs AND summer overnight camp opportunities.  Check out their *new* all-inclusive camp guide at:
    http://www.varietyp hila.org/ media/docs/ Camp_Guide_ 2008-2009_ 11_05.pdf

  4. 20% off all orders at DownsEd's new online shop-  Down Syndrome Education International has launched a new online shop to improve the service they offer customers worldwide. The charity's full range of publications are available through the store, along with selected books, DVDs and teaching materials from other publishers.

    Among the available publications are DownsEd's comprehensive range of Down Syndrome Issues and Information books on reading, speech and language, memory, social development, education, family issues and adult living. Also featured are the charity's Down Syndrome in Practice films on development for babies, early speech and language activities and school inclusion.

    The store offers full details of all available publications and pricing in choice of three currencies (UK Pounds, Euros and US Dollars). Credit or debit card payments are accepted through HSBC Bank, offering robust and secure transaction processing.

    For a limited time only, we are offering 20% off all orders placed online and paid by debit/credit card. To claim your discount, enter one of the following code:

    • US Dollars: FLDW770E (minimum order $80.00)

    Offer valid all online orders (discount applied to products only - excluding delivery) paid by credit/debit card on or before 28 February 2009. Subject to minimum order values of £50.00, €60.00 or $80.00. 
     

  5. Post Secondary Education in South Carolina

Inspirational

  1. Child With Down Syndrome Earns Black Belt
    For the most part, when you think of martial arts, the picture is of fighting and elegance mixed together as an art form. For Bradley Schneider and his mother Barbara Sternfield, the fighting is not only a part of karate, but also a part of life. Bradley was born with Down syndrome, but that hasn't stopped his passion for martial arts, and now he's earned the highest honor.
     

  2.  Polar Plungers set for next Sunday’s challenge
    Five-year-old Ben Archer is a pretty special little fellow. The son of Paul and Elaine of Lakefield, Ben has Down Syndrome
     

  3. The healing power of music
    Sujeet Desai stroked each piano key with care, taking in every note, allowing himself to move with the music. The passionate musician allowed the deep sound of Pachibel's Canon to fill Setnor Auditorium. The music does not discriminate against who is playing it: if the sound is good, it comes out clear and rich; the music doesn't know that Desai has Down syndrome.
     

Research

  1. From the NDSC E-Brief-We'd like to continue to support the medical community by offering a survey for you to share with your members. This Penn State study's purpose is to learn more about needs and expectations of genetic counseling. This research is intended to help develop a survey that genetic counselors and other health care providers can use to find out about their patients' background and expectations for their appointments.
     
    Parents of children with Down syndrome and adult siblings of persons with Down syndrome are invited to take part.  No prior experience with genetic counseling is necessary.  The survey takes about 30 min to complete.  If you are interested in being in the study, please go to https://online.survey.psu.edu/downsyndrome/

Websites

  1. Down Syndrome Advocacy Foundation website has resources and info on an education conference in Long Island.http://www.dsafonline.org/index.html
     

  2. The Up Side of Downs of Greater Cleveland exists to provide support, education, and advocacy for people with Down syndrome, their families and communities throughout Northeast Ohio. www.theupsideofdowns.org  They invite you to connect with our supportive community, to join us at one of our many programs & services, do research in our comprehensive resource directory, read our latest e-newsletter, enjoy our scrapbook photo gallery and so much more.

Books

  1. American history as seen from a different perspective
    Victoria Harris co-authored a book with a perceptive young man with Down syndrome.

Adults with Disabilities

  1. From NDSC e-Breif-The National Down Syndrome Congress has entered into a partnership with the National Service Inclusion Project, to promote volunteerism among adults with Down syndrome. We all know some really terrific self advocate volunteers - now let's see if we can take it to the next level, and incorporate our self advocates into the nation's Americorps Program. We'll need your help in connecting Americorps' state disability coordinators with interested self advocates and we'll be sending you more detailed information in the coming weeks. In the meantime, you can visit http://www.serviceandinclusion.org/ to learn more. We want you to know we believe this is an exciting venture that will provide new opportunities and incredible experiences for adults with DS. After all, they are More Alike Than Different!

Travel

  1. From NDSC e-Breif -Who knew Down syndrome and cruises went so well together? Organized by the Down Syndrome Network of Arizona, the Cruise with a Cause sails from Los Angeles on June 5. A portion of your fare will go to Down syndrome research through the Down Syndrome Research and Treatment Foundation: http://www.dsrtf.org/
     
    Then from the east coast, the second annual Buddy Cruise will sail from Ft. Lauderdale on October 17. Last year's cruise was a big hit, and Emily Perl Kingsley and Sujeet Desai plan to return. See http://www.buddycruise.com/site2/ for more details.

Prenatal

  1. Breakthrough In Prenatal Screening For Down Syndrome
    Lenetix, Inc. announced a significant step in the development of an improved first and second trimester non-invasive fetal chromosomal screening test to detect Down syndrome and other genetic fetal conditions.
     
  2. Sequenom Announces New Positive Data On Down Syndrome Detection And Unveils Breakthrough DNA Approach To Prenatal ...
    Sequenom, Inc. announced new positive data from the prospective clinical studies using the Company's noninvasive SEQureDx™ technology, enabling the detection of fetal aneuploidy from maternal blood.
     
  3. Pre-natal test may detect autism
    British researchers say high levels of testosterone discovered during pre-natal testing may indicate a risk of autism.Cambridge University scientists say the testosterone levels were determined using amniotic fluid removed from pregnant mothers through amniocentesis, which is used to detect Down syndrome in unborn infants, the Guardian newspaper reported Monday.Lead researcher Simon Baron-Cohen ...