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  • GFPD Conference Updates | Global Foundation For Peroxisomal Disorders
    home feeling a sense of community There was a tremendous amount of information shared and many of our families participated in clinic which took place at Omaha Children s on Tuesday August 2nd It is difficult to put our event into words but if it had to be summarized into one I d use home It felt good to be with people who understood the ins and outs of every aspect of our children both medical professionals and parents Families of children who have passed away from the disorder got a chance to reconnect with others and a part of their lives that they don t ever want to forget Holding a child similar to theirs brought back memories that evoked so much emotion many tears but heart felt and healing Others who had never met another child with PBD had a glimpse of what this path may look like as their child ages We had participants as young as four months and as old as 29 years It provided hope for our young parents who had been given less than encouraging forecasts of their child s future We hope to have even more participation at our next event GFPD

    Original URL path: http://www.thegfpd.org/gfpd-news-september-14-2011 (2015-03-27)
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  • GFPD Conference Scholarship Fund | Global Foundation For Peroxisomal Disorders
    Conference Scholarship Fund If your family is NOT planning on attending the 2013 GFPD Conference please consider making a donation and or participating in our campaign to help other families participate Do you have extended family members and friends who would consider making a small donation in honor or memory of your child ren We need your help as we establish the GFPD Conference Scholarship Fund It is the goal of the GFPD to make our conferences affordable to all and we encourage all family participants to seek out fundraising opportunities in the communities in which they live However we know that some families may still need additional support in order to attend The GFPD Conference Scholarship Fund will be used to provide families with small scholarships up to 500 to help them offset the costs of travel conference fees and lodging expenses associated with attending the GFPD Conference It is our hope that with your help the GFPD Conference Scholarship Fund will be able to eliminate a portion of the financial strain that attending the conference can be for some of our families How can you help Donate via Causes through Facebook here is a direct link to our

    Original URL path: http://www.thegfpd.org/gfpd-conference-scholarship-fund (2015-03-27)
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  • Kloefkorn Cubs for GFPD! | Global Foundation For Peroxisomal Disorders
    Events Fundraising Resources Shop Blog Contact Recent Articles Pound the Pavement 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 Kloefkorn Cubs for GFPD A big thank you to the 4th Grade Students at Kloefkorn Elementary in Lincoln Nebraska for hosting Hat Day in honor of their friend and fellow student Sam Butalla These 4th Graders implemented a spirit day project that allowed the Kloefkorn School Community to wear a hat to school by donating 1 to GFPD In addition to increasing awareness by giving daily announcements about Peroxisome Biogenesis Disorders they raised 601 for GFPD After learning about Peroxisome Biogenesis Disorders these students are anxious to meet other children and families affected by PBD at the 2013 GFPD Family Scientific Conference in Lincoln this summer Students are invited show their support by participating in a balloon release on Monday July 29th at 5 p m in Centennial Mall specific location TBA due to the ongoing

    Original URL path: http://www.thegfpd.org/kloefkorn-cubs-for-gfpd (2015-03-27)
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  • Ilan-a-thon in the news | Global Foundation For Peroxisomal Disorders
    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 Ilan a thon in the news The Ilan a thon Memorial 5k is coming up in a few weeks and is gaining local media attention Check out coverage of the April 21st event in these Baltimore news sources ABC2News

    Original URL path: http://www.thegfpd.org/ilan-a-thon-in-the-news (2015-03-27)
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  • Small Grants Available for PBD-ZSD Research | Global Foundation For Peroxisomal Disorders
    Pound the Pavement 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 Small Grants Available for PBD ZSD Research The GFPD is pleased to announce the availability of small grants Grants are designed to assist investigators in obtaining preliminary findings testing proof of concept or conducting other research activities designed to prepare and support competitive full scale grant applications related to Peroxisomal Biogenesis Disorder Zellweger Spectrum Disorder PBD ZSD Clinicians and researchers qualified in any aspect of PBD ZSD may apply The application should contain aims that are specific to PBD ZSD The period of the award will be up to 2 years in length starting September 1st of the year that the application was submitted Awards will be made up to 25 000 annually for direct costs All applications will be critiqued and scored by an independent grant review board comprised of GFPD board members and independent medical and scientific personnel Application deadline is June

    Original URL path: http://www.thegfpd.org/small-grants-available-for-pbd-zsd-research (2015-03-27)
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  • GFPD Fall 2012 Newsletter | Global Foundation For Peroxisomal Disorders
    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 GFPD Fall 2012 Newsletter The GFPD celebrated its second birthday in October 2012 Check out the GFPD Fall 2012 Newsletter for research

    Original URL path: http://www.thegfpd.org/gfpd-fall-2012-newsletter (2015-03-27)
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  • Researcher to Conduct PBD-ZSD Natural History Study | 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 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

    Original URL path: http://www.thegfpd.org/researcher-to-conduct-pbd-zsd-natural-history-study (2015-03-27)
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  • Hearts Advocating Needs for Deafblind Services: The Newsletter of the Illinois Advocates for the Deafblind (IADB) | Global Foundation For Peroxisomal Disorders
    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 Hearts Advocating Needs for Deafblind Services The Newsletter of the Illinois Advocates for the Deafblind IADB Maria McCarrick mother of Katherine McCarrick contributed this article in the most recent

    Original URL path: http://www.thegfpd.org/hearts-advocating-needs-for-deafblind-services-the-newsletter-of-the-illinois-advocates-for-the-deafblind-iadb (2015-03-27)
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