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From the Desk of NOAH

April 2008 - Posts

  • NOAH PA Kids Get Together Sunday June 7th

    Are you a family with a child with albinism?

    If so please join us for an afternoon of time for parents to chat and kids to play.

    j0400238

    When: Saturday, June 7th from 10am-1pm

    Where: Hosted at a local family's home in King of Prussia, PA

    Please bring a snack, food or drink to share with the group. We are planning to be outdoors so remember the sunscreen, sunglasses and hats. Please RSVP to knk828@aol.com by Saturday May 24th with names of those attending, ages of children & what food or drink you are able to bring, and you will be provided more information about the location.

  • Albinism Documentary, 'Butterfly', showing in NYC

    Directed by Yulia Mahr, 'Butterfly" is short documentary about a young Scottish swimmer with albinism called Gemma Sherry.

    The film is showing as part of a series of shorts called All Truisms. Tickets and more information about this film are available through the  Tribeca website.This film will be showing in competition at the Tribeca Film Festival in New York in the coming weeks.

    The screening times are: 

    • April 24th 4pm (AMC Village VII)
    • April 26th 12.00pm (AMC Village VII)
    • April 29th 7.30pm (AMC 19th Street East)
    • May 1st 5pm (Village East Cinemas)
    • May 4th 1pm (Village East Cinemas)


    'Butterfly' was nominated for a BAFTA (Scotland) and received its world premiere at the Edinburgh Film festival. It has gone on to play around the world, and apart from New York can next be seen in North America, at the DOXA Documentary Film Festival in Vancouver.

  • 2008 CONFERENCE NEWS: Lucky’s Little Ones Update

    lucky_alone1

    New and Improved Program for our 6 mos. to 4 year olds!  

    Age Appropriate Groupings and Activities

    • Safe, positive and nurturing environment where each child can have fun and make new friends.
    • Structured activities and free play time
    • Theme Days:
                  Wild and Crazy Beach Party           
                  Fun with the Arts (arts and music/movement)

    Safety Procedures

    • CPR and First Aid certified Team Leaders
    • RN’s on site
    • Security bracelets issued to parent and child upon on-site registration. 
    • Digital photograph of parent and child taken at check-in.

    Qualified Team Leaders and Caregivers

    • Program coordinated by experienced, certified preschool director/teacher
    • Staffing by professionals experienced in the field of visual impairment including: TVI’s, early intervention specialists, O&M specialists

    Outstanding Caregiver to Child Ratios

    • 1:2 ratio for children 6 months through 11 months old
    • 1:3 ratio for children 1 through 2 years old
    • 1:5 ratio for children 3 through 4 years old
  • Positive Exposure, “In the Eye of the Beholder”, comes to Minneapolis

    Free and open to the public

    April 24, 2008
    7:00 PM - 9:30 pm
    Illusion Theater
    528 Hennepin Ave.
    Minneapolis, MN

    April 25, 2008
    Noon - 1:30 PM
    Mayo Auditorium,
    University of Minnesota
    Twin Cities Campus

    “In the Eye of the Beholder” will focus on the unique perspective of people with disabilities. Each program will include a presentation, audience discussion, reception, and photograph exhibit by Rick Guidotti, founder of Positive Exposure—a nonprofit organization whose innovative programs challenge the stigma associated with difference and celebrates the richness of human diversity. Positive Exposure encourages participants to ask questions such as: What does a genetic disease look like? How do we define disability? How do we form our perceptions of disease and disability? What do others see when they see someone ‘affected’ with a disease or disability? These are among some of the most challenging questions students and practitioners in all areas of health care must face.

    For registration, visit www.bioethics.umn.edu; or contact the Center for Bioethics at 612-624-9440; email: bioethx@umn.edu.

    Sponsored by the University of Minnesota’s Institute for Human Genetics, the Center for Bioethics, and the Illusion Theater; Funded by a grant from the University of Minnesota Consortium on Law and Values in Health, Environment & the Life Sciences

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