archive-org.com » ORG » T » THEGFPD.ORG

Total: 130

Choose link from "Titles, links and description words view":

Or switch to "Titles and links view".
  • Family & Scientific Conferences | Global Foundation For Peroxisomal Disorders
    Events Fundraising Resources Shop Blog Contact Become a member of GFPD to receive our quarterly newsletter Join our support group and be connected with other families Make a donation to help support our cause Every little bit helps Family Scientific Conferences Use the links below to view details about upcoming conferences as well as slides and videos of presentations given by scientists and GFPD Board members at previous conferences Upcoming

    Original URL path: http://www.thegfpd.org/family-and-scientific-conferences (2015-03-27)
    Open archived version from archive


  • 2015 Conference | Global Foundation For Peroxisomal Disorders
    Omaha Nebraska LOCATION Conference activities will take place at The Embassy Suites Downtown Old Market 555 S 10th Street Omaha Nebraska 68102 LODGING A block of suites has been reserved for our group with a special conference rate of 114 night This rate is available July 14 23 2015 Families can preference suite type two queen or one king non smoking or smoking and any type of special accessibility requirements All suites have a limited kitchen and a living room with a pull out sofa sleeper PLEASE MAKE YOUR RESERVATIONS ASAP Visit www embassysuites com and enter the group rate code AGF on the reservations page For telephone reservations call 402 346 9000 and specify rate AGF Included in the rate is a complimentary made to order breakfast and a nightly managers reception AIRPORTS Omaha s Eppley Airfield OMA is located within 4 miles of the Embassy Suites Downtown Old Market and provides free shuttle transportation to from the hotel Please mention if anyone in your party requires accessible transportation Kansas City International MCI is 2 ½ hours from Omaha and provides some non stop flights not available into OMA PROFESSIONAL CONSULTS Individual patient consultations with select GFPD Medical Advisors are available onsite during the conference free of charge Appointments at Children s Hospital Medical Center with Dr William Rizzo Metabolic Specialty Dr Eric Rush Genetics Bone density DEXA Scans and Dr Donny Suh ophthalmology OCT Scans are available by calling Amee Thedens in scheduling at 402 955 4199 Insurance information will be requested when making appointments COST It is the goal of The Global Foundation for Peroxisomal Disorders to make the conference affordable to all participants The registration fees offset the cost of ALL meals during the conference printed materials a conference t shirt other promotional items EARLY BIRD

    Original URL path: http://www.thegfpd.org/2015-conference (2015-03-27)
    Open archived version from archive

  • 2013 Conference | Global Foundation For Peroxisomal Disorders
    Lincoln Nebraska July 26 30 Video Opening remarks by GFPD President Shannon Butalla and Treasurer Melissa Gamble Scientific Update and Grants Presentation by Mousumi Bose GFPD Family Video 2013 Conference Presenter Bios Presentations PBD ZSD 101 Dr Nancy Braverman McGill University Presentation Slides Video Newborn Screening for X Linked Adrenoleukodystrophy X ALD and Other Peroxisomal Disorders Ann Moser Kennedy Krieger Institute Presentation Slides Video PBD ZSD Research Initiatives IP Stem Cell Updates Dr Joseph Hacia Keck School of Medicine University of Southern California Presentation Slides currently unavailable Video PBD ZSD and Bone Disease Dr Eric Rush University of Nebraska Medical Center Presentation Slides Video Special Needs Trusts Estate Planning and Decision Making Joshua Brothers JD Dussault Law Group Presentation Slides Video Identification of Chemical and Pharmacological Chaperones to Treat PBD ZSD with PEX1 Gly843Asp Mutation Gillian MacLean MSc McGill University Presentation Slides Video Research Update A Clinical Trial of Betaine for Peroxisomal Biogenesis Disorders Dr Nancy Braverman McGill University Ann Moser Kennedy Krieger Institute Dr William Rizzo University of Nebraska Medical Center Presentation Slides Video How Diosmetin Works for PEX1 Gly843Asp Drug Company Partnering Catherine Argyriou MSc McGill University Presentation Slides Video Understanding PBD ZSD The Systems of Nature at Work in Fruit Flies and the Clinic Dr Michael Wangler Baylor College of Medicine Presentation Slides Video A New Mouse Model for Zellweger Spectrum Disorders PEX1 G844D Dr Steven Steinberg Johns Hopkins University Kennedy Krieger Institute Presentation Slides Video The Fruit Fly Model of PBD ZSD Dr Richard Rachubinski University of Alberta Presentation Slides Video Hearing Issues and Technology Considerations Jeffery Simmons MA CCC A Boys Town National Research Hospital Presentation Slides currently unavailable Video Pediatric Hospice and Palliative Care Sue Bace LICSW Omaha Children s Hospital and Medical Center Presentation Slides currently unavailable Video Educating Students who are Deaf

    Original URL path: http://www.thegfpd.org/2013-conference (2015-03-27)
    Open archived version from archive

  • The Global Foundation for Peroxisomal Disorders (GFPD) | Global Foundation For Peroxisomal Disorders
    Resort in Orlando Florida July 30 August 2nd 2012 GFPD Family Support Conference Opening Video The Global Foundation for Peroxisomal Disorders thanks Stephen D Andersen RHU of Lincoln NE for securing a 5 000 grant from the Million Dollar Round Table Foundation on behalf of The Global Foundation for Peroxisomal Disorders GFPD The grant supported the 2012 GFPD Family Support Conference which was held in Orlando Florida July 30 August

    Original URL path: http://www.thegfpd.org/for-families/annual-conference (2015-03-27)
    Open archived version from archive

  • 2011 Conference | Global Foundation For Peroxisomal Disorders
    a Donation Fundraising Events Fundraising Resources Shop Blog Contact Become a member of GFPD to receive our quarterly newsletter Join our support group and be connected with other families Make a donation to help support our cause Every little bit helps 2011 Conference The 2011 GFPD Family and Scientific Conference was held at the Embassy Suites La Vista Omaha Nebraska July 31 August 2 2011 All video from the 2011

    Original URL path: http://www.thegfpd.org/for-families/2011-conference (2015-03-27)
    Open archived version from archive

  • Medical and Research Information | Global Foundation For Peroxisomal Disorders
    test The pupils are usually dilated Testing The testing time is very short around 5 7 minutes The child is seated for the test and will need to be cooperative and fixate on the light The child typically needs to be at least 4 years old The face is stabilized with a positioning device during the test A special camera takes pictures of the inner eye The OCT image is captured by directing beams of light into the eye for a few seconds These beams of light are reflected out of the eye and are processed to give very detailed cross sectional images of the different structures of the eye The test should also include Fundus Autofluorescence FAF imaging This additional imaging test determines whether retinal cells that are present are also functionally active FAF has been useful in determining the underlying mechanisms that cause retinal disease If you are interested in pursuing this procedure for your child contact your child s ophthalmologist to coordinate a scan in facility that performs OCT Dr Braverman will be able to provide a letter for your child s ophthalmologist stating the reasons for requesting an OCT Below is a list of several of the facilities in North America that perform OCT scans Medical Centers Performing OCT Montreal Children s Hospital Montreal Contacts Dr Nancy Braverman or François Plourde Phone 514 934 1934 ext 23404 or 23403 Casey Eye Institute Oregon Health and Science University Portland OR Contacts Dr Mark Pennesi Dr Richard Weleber Dr Paul Yang Phone 503 494 8386 Cleveland Clinic Cleveland OH Contact Tammy Skaramagas Phone 216 445 6724 Carver College of Medicine University of Iowa Iowa Contact Dr Edwin Stone Phone 319 335 8270 New York Eye and Ear Infirmary Mount Sinai New York NY Contact Dr Robert Ritch via

    Original URL path: http://www.thegfpd.org/for-families/medical-educationalinformation (2015-03-27)
    Open archived version from archive

  • Family Stories | Global Foundation For Peroxisomal Disorders
    Fundraising Resources Shop Blog Contact Become a member of GFPD to receive our quarterly newsletter Join our support group and be connected with other families Make a donation to help support our cause Every little bit helps Family Stories You will often hear the parents of children impacted by PBD ZSD say that every child writes their own story The wide range and varying severity of symptoms makes each child s battle with PBD ZSD as unique as the children and their families Below you will find some of these stories written by the parents themselves Chase B Kentucky USA Ilan B New Jersey USA Brady C Florida USA Olivia F Virginia USA Jonah J Florida USA Archer M Mississippi USA Ethan M Illinois USA Corinne M Arkansas USA James William J W M Florida USA Will R Minnesota USA Phoenix S Australia Teagyn S Virginia USA Lydia T Connecticut USA Cole T Texas USA Corinne M s story originally appeared here and is reposted with permission If you are the parent of a child with PBD ZSD we want to hear from you For more information please contact GFPD Registry and Support Group Coordinator Pamela Marshall at registry thegfpd

    Original URL path: http://www.thegfpd.org/family-stories (2015-03-27)
    Open archived version from archive

  • Support Group | Global Foundation For Peroxisomal Disorders
    group and be connected with other families Make a donation to help support our cause Every little bit helps Support Group We have a great online community If you haven t connected yet check us out GFPD Parent Support Parents Guardians only PBD Dads A Band of Brothers Dads only GFPD Shutterfly Site Parents Guardians only GFPD Extended Family Support GFPD Public Facebook Page GFPD website If you would like

    Original URL path: http://www.thegfpd.org/for-families/support-group (2015-03-27)
    Open archived version from archive



  •