The National Fragile X Foundation Podcast

The National Fragile X Foundation
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Podcasts from Fragile X professionals and experienced family members. If you have any questions or suggestions, email NATLFX[at]fragilex[dot]org

Episodes

  1. Preparing Yourself for the 13th International Fragile X Conference Part 3 of 3

    07/05/2012

    Preparing Yourself for the 13th International Fragile X Conference Part 3 of 3

    Experienced parents and conference-goers, give you the lowdown on how to prepare for the 13th International Fragile X Conference in Miami. Featuring Jayne Dixon Weber Arlene Cohen Michele Kaplan Part 3 The Emotional Aspect of the Conference Taking Care of Yourself Meeting New Friends and Reconnecting Questions and Concerns

    12 min
  2. Preparing Yourself for the 13th International Fragile X Conference Part 2 of 3

    07/05/2012

    Preparing Yourself for the 13th International Fragile X Conference Part 2 of 3

    Experienced parents and conference-goers, give you the lowdown on how to prepare for the 13th International Fragile X Conference in Miami. Featuring Jayne Dixon Weber Arlene Cohen Michele Kaplan Part 2 When are Most People Arriving? What Kinds of People will be There? The Wednesday 3:45 Session Other Things to Know Spotlight on Extra Conference Activities

    24 min
  3. Preparing Yourself for the International Fragile X Conference. Part 1 of 3

    07/05/2012

    Preparing Yourself for the International Fragile X Conference. Part 1 of 3

    Experienced parents and conference-goers, give you the lowdown on how to prepare for the 13th International Fragile X Conference in Miami. Featuring Jayne Dixon Weber Arlene Cohen Michele Kaplan Part 1 features Getting Ready at Home Arriving at the Miami Airport Nearby and Must See Attractions Conference Registration Childcare

    18 min

  4. 01/06/2012

    Let's Get Going: Toileting Ideas

    With Karen Riley, PhD, Cindi Rogers, parent, and Jayne Dixon Weber, Coordinator of Support Services, NFXF & parent. A 65 minute recorded interview about toileting ideas. This is from the archives and was recorded in April 2009.

    1h 8m
  5. Transitioning Forward (Part 1 of 2)

    12/05/2011

    Transitioning Forward (Part 1 of 2)

    In this episode, we interview two people whose children are moving forward in their lives. Melissa Street's son Jesse is transitioning into a typical classroom, and Carolyn Jackson's two daughters are planning life after high school.

    41 min

  6. 10/25/2011

    Self-Regulation Through the Lifespan

    What is self-regulation and how do we modify it for Fragile X? Join the NFXF's Robert Miller and Jayne Dixon Weber as they interview LINKS Leader/Parent Laureen Majeske and Developmental FX's Tracy Stackhouse and Sarah "Mouse" Scharfenaker for a discussion on how self-regulation makes things work for Fragile X. Note: We apologize for some technical difficulties throughout much of this Podcast. We promise that we are doing our best to find a good way to record our calls so that it is much clearer and has less echo. Please bear with us as we get used to these new technologies!

    40 min
  7. Maximizing Your Child's Educational Experience with Individualized Education Plans

    09/22/2011

    Maximizing Your Child's Educational Experience with Individualized Education Plans

    Join us as we speak with Vicki Sudhalter, PhD, about Individualized Education Plans. The Individualized Education Plan (IEP) is a very influential document in the academic life of any child with special needs. In this session we will discuss how to help create an IEP which addresses and helps to ameliorate behavioral challenges confronting children with fragile X syndrome (FXS). This presentation will address the importance of a child's IEP and the IEP writing and approval process, with an emphasis on the importance of including accommodations for hyperarousal as part of the IEP for any child with FXS.

    1 hr

  8. 12/15/2010

    Surviving the Holidays

    We speak with the Foundation's Support Services Coordinator Jayne Dixon Weber about her holiday experiences with her FXS-diagnosed son Ian. She gives a few tips on how to deal with the holidays, which can also be applied to other situations. You can reach Jayne Dixon Weber at treatment@fragilex.org

    33 min

  9. 10/06/2010

    Talking with Students (grades K – 5) about Fragile X Syndrome with Holly Roos

    Supplementary Materials: PDF of Powerpoint Presentation (download) This presentation is designed to give participants the skills and confidence to present the topic of FXS to their child’s classmates. Reaching out to students is a great way to provide a personal understanding of Fragile X along with facts about what is Fragile X. This understanding of fragile x and disabilities in general will help foster friendships and compassion. Holly Roos is the mother of 2 children, Parker & Allison both affected by Fragile X Syndrome. She is the founder and president of the Central IL Fragile X Resource Group and Board member of Advocates for Access in Peoria Heights, Illinois. In 2007 Holly was the winner of WEEK's 25 women in Leadership for her work in Fragile X. The National Fragile X Foundation recognized Holly’s outstanding contributions to the FX Community with the Education and Awareness Award at the 11th International Fragile X Conference.

    1h 2m

  10. 10/05/2010

    Issues in Sensory Integration and Fragile X Syndrome

    Supplementary Material PDF of Powerpoint Presentation (download) Learn about Sensory Integration with Tracy Stackhouse, MA, OTR, and Sarah “Mouse” Scharfenaker, MA, CCC-SLP. They are co-founders and directors of Developmental Fragile X Resource Center in Denver, Colorado.

    1h 3m
  • 10 Episodes

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Podcasts from Fragile X professionals and experienced family members. If you have any questions or suggestions, email NATLFX[at]fragilex[dot]org

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