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".
  • Blog | Global Foundation For Peroxisomal Disorders - Part 11
    for research updates and information about upcoming family organized fundraisers as well as an update from GFPD President Shannon Butalla Fall 2012 Newsletter Researcher to Conduct PBD ZSD Natural History Study The Global Foundation for Peroxisomal Disorders is assisting Dr Nancy Braverman M S M D Associate Professor Depts of Human Genetics and Pediatrics McGill University Montreal Children s Hospital with her efforts to recruit patients for a Natural History Study of Peroxisomal Biogenesis Disorders For more information please visit http clinicaltrials gov ct2 show study NCT01668186 term peroxisome biogenesis disorder rank 1 If you are a parent guardian of a child or adult with a Peroxisomal Biogenesis Disorder and wish to be involved in the study please print off the Natural History Study Consent Form and Photo Release and MAIL ORIGINAL SIGNED COPIES to GFPD 5147 S Harvard Ave Suite 181 Tulsa OK 74135 Information will be available in October 2012 about the types of data that will be gathered If you have any questions about the Natural History Study or your involvement in it please contact Melissa Gamble by email at melissa thegfpd org Hearts Advocating Needs for Deafblind Services The Newsletter of the Illinois Advocates for the

    Original URL path: http://www.thegfpd.org/blog/page/11 (2015-03-27)
    Open archived version from archive

  • Remembering Jordan: GFPD Family in the News | Global Foundation For Peroxisomal Disorders
    for Peter 2015 High School Robotics Team Creates Car for GFPD Kid GFPD Make a Wish Kid Donates Wish Categories Fundraising Events GFPD Families in the News GFPD Family Spotlight GFPD News GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps Remembering Jordan GFPD Family in the News The Highlands Today edition of the Tampa Tribune recently shared

    Original URL path: http://www.thegfpd.org/remembering-jordan-gfpd-family-in-the-news (2015-03-27)
    Open archived version from archive

  • Save the Date: 2nd Annual Ilan-a-thon 5k in Baltimore, MD | Global Foundation For Peroxisomal Disorders
    GFPD Family Spotlight GFPD News GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps Save the Date 2nd Annual Ilan a thon 5k in Baltimore MD Save the date for the second annual Ilan a thon 5k Race More information to come Visit ilanathon org to learn more about Ilan s life and the annual 5k Race his

    Original URL path: http://www.thegfpd.org/save-the-date-2nd-annual-ilan-a-thon-5k-in-baltimore-md (2015-03-27)
    Open archived version from archive

  • Upcoming Event: 2nd Annual Dinner Dance to Honor Diego and Adrian Alfaro | Global Foundation For Peroxisomal Disorders
    the News GFPD Family Spotlight GFPD News GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps Upcoming Event 2nd Annual Dinner Dance to Honor Diego and Adrian Alfaro The Second Annual GFPD Dinner Dance benefiting the Global Foundation for Peroxisomal Disorders in memory of Diego and Adrian Alfaro will be held on Saturday October 5th at the Denair

    Original URL path: http://www.thegfpd.org/upcoming-event-2nd-annual-dinner-dance-to-honor-diego-and-adrian-alfaro (2015-03-27)
    Open archived version from archive

  • Livi Menard in the News | Global Foundation For Peroxisomal Disorders
    Team Creates Car for GFPD Kid GFPD Make a Wish Kid Donates Wish Categories Fundraising Events GFPD Families in the News GFPD Family Spotlight GFPD News GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps Livi Menard in the News The Clayton News Star writes about the Menard family s upcoming trip to Lincoln NE to participate in

    Original URL path: http://www.thegfpd.org/livi-menard-in-the-news (2015-03-27)
    Open archived version from archive

  • Ilan-a-thon 5k Race 2013 | Global Foundation For Peroxisomal Disorders
    support our cause Every little bit helps Ilan a thon 5k Race 2013 By Mousumi Bose The First Annual Ilan a thon Memorial 5K benefiting the GFPD took place on April 21 2013 in Patterson Park Baltimore MD We organized this event to celebrate and honor the life of our son Ilan and raise awareness for PBD ZSD Throughout our year of planning for the race we acquired over 20 corporate sponsors and 15 family sponsors Our flagship sponsor was Bayada Pediatrics the home health care agency that provided Ilan with home nursing care during his life The turnout for the race was overwhelming with more than 380 individuals registered In addition to race participants others very generously donated their time and services to our event by providing balloon animals and face painting for the children Overall it was a really fun albeit slightly chilly day that raised around 17 000 for the GFPD We are so thankful to our GFPD families that were in attendance including the Menard Woodbury Everngam and Goffaux families The Sacra family including Ilan a thon honoree TJ were also present We are so grateful to GFPD President Shannon Butalla GFPD Treasurer Melissa Gamble and

    Original URL path: http://www.thegfpd.org/ilan-a-thon-5k-race-2013 (2015-03-27)
    Open archived version from archive

  • Flight For Phoenix | Global Foundation For Peroxisomal Disorders
    area wanted to donate 1 000 What a start April 6th was our first official fundraiser for Phoenix It was a sports competition where each team of 7 10 people paid their 200 fee and competed against other each in volleyball soccer dodge ball netball sand darts and blind volley We had 10 teams and each wore a different colour We ran raffles and had a bbq and canteen Everything was donated from the winning teams prizes through to all the raffle prizes and all food and drinks A lot of time and effort went into the day and we raised 3838 80 It was a wonderful day and for the first time realised just how many friends we had behind us wanting the best for Phoenix We even had our very own Australian Idol Stan Walker compete Here is a picture of our team TEAM PHOENIX And a few more pictures from the day Our 2nd and our biggest fundraiser was our Fair Day Phoenix attends weekly swimming lessons at Billabong Swim School which he loves The owners had heard about Phoenix and wanted to help so they with the help of KIN and myself organised the fair day for May 5th Very quickly flyers were printed and we were everywhere Television crews magazines and newspapers were interested in a feel good story to send a sweet little boy to the US for support and information on research and medical advice from specialists Everyone wanted to help We had high value items and services donated for our Silent Auction and raffles We had a monster garage sale Our local rotary looked after a BBQ while Subway and Raw Energy provided food with 100 of proceeds going to Phoenix We had activities for children which cost 2 to participate and

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

  • Natural History Study of Peroxisomal Biogenesis Disorders | Global Foundation For Peroxisomal Disorders
    Peter 2015 High School Robotics Team Creates Car for GFPD Kid GFPD Make a Wish Kid Donates Wish Categories Fundraising Events GFPD Families in the News GFPD Family Spotlight GFPD News GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps Natural History Study of Peroxisomal Biogenesis Disorders GFPD is assisting Dr Nancy Braverman M S M D Associate Professor Depts of Human Genetics and Pediatrics McGill University Montreal Children s Hospital with her efforts to recruit patients for a Longitudinal Natural History Study of Peroxisomal Biogenesis Disorders For more information please visit www clinicatrials gov a service of the U S National Institute of Health or follow this direct link If you are a parent guardian of a child or adult with a Peroxisomal Biogenesis Disorder and wish to be involved in the study please print off the Natural History Study Consent Form and Photo Release and mail original signed copies to GFPD 5147 S Harvard Ave Suite 181 Tulsa OK 74135 If you have any questions about the Natural History Study or your involvement in it please contact Melissa Gamble by email at melissa thegfpd org This

    Original URL path: http://www.thegfpd.org/natural-history-study-of-peroxisomal-biogenesis-disorders (2015-03-27)
    Open archived version from archive