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 13
    website There has been so much that has transpired over the last few months Most recently we have been busy planning our first annual conference which will be held in Omaha Nebraska July 31 August 2 2011 This is a great opportunity for families to connect with doctors and scientists who have devoted their professional lives to helping children diagnosed with Zellweger Spectrum Disorders Additionally families have the opportunity to meet others faced with similar challenges and embrace a community of families that get it If you are a parent of a child that wants to come to the conference but it seems impossible for one reason or another please contact me I can be reached by phone at 402 429 5650 or at shannon thegfpd org The website is a work in progress and we are striving to continue to add content to make it a primary resource for families and professionals If you are a professional passionate about children with PBDs or parent or family member impacted by this disorder please feel free to leave a comment We appreciate all the support to help make GFPD a reality Warm regards Shannon Butalla President Thank You For Visiting Thanks

    Original URL path: http://www.thegfpd.org/blog/page/13 (2015-03-27)
    Open archived version from archive


  • Pound the Pavement for Peter 2012 | Global Foundation For Peroxisomal Disorders
    Donation Fundraising 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 Pound the Pavement for

    Original URL path: http://www.thegfpd.org/pound-the-pavement-for-peter-april-14-2012-atlanta-ga/march-april-2012-034 (2015-03-27)
    Open archived version from archive

  • Pound the Pavement for Peter - GFPD Friends | Global Foundation For Peroxisomal Disorders
    Donation Fundraising 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 Pound the Pavement for

    Original URL path: http://www.thegfpd.org/pound-the-pavement-for-peter-april-14-2012-atlanta-ga/pound-the-pavement-for-peter-gfpd-friends (2015-03-27)
    Open archived version from archive

  • #PauseforPBDs on October 5, 2014 | Global Foundation For Peroxisomal Disorders
    News GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps PauseforPBDs on October 5 2014 Sunday October 5 2014 is The Global Foundation for Peroxisomal Disorders 4th birthday Show support by taking a moment to pause for individuals families devastated by Peroxisome Biogenesis Disorders Release a balloon say a prayer light a candle meditate have a moment of

    Original URL path: http://www.thegfpd.org/pauseforpbds-on-october-5-2014 (2015-03-27)
    Open archived version from archive

  • GFPD Parent Brings Special Needs Shopping Carts to Her Town | Global Foundation For Peroxisomal Disorders
    Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps GFPD Parent Brings Special Needs Shopping Carts to Her Town Way to go Carolina Thanks to a GFPD mom children with special needs in Turlock CA now have access to a Caroline s Cart in their local grocery store http www turlockjournal com section 12 article 26844 We appreciate all of Carolina

    Original URL path: http://www.thegfpd.org/gfpd-parent-brings-special-needs-shopping-carts-to-her-town (2015-03-27)
    Open archived version from archive

  • Diego and Adrian’s 2nd Annual Dinner Dance Benefits GFPD | Global Foundation For Peroxisomal Disorders
    raffles and a silent auction The raffle and silent auction items alone raised over 5 000 One raffle winner even donated her winnings of 750 back to the GFPD in an act that truly honored the spirit of the evening and the immense hard work of the Alfaros and their many volunteers including servers bartenders greeters raffle organizers and entertainers who made the event possible Carolina and Jose welcomed GFPD families who traveled from as far away as Arizona and Washington They also introduced Ainsley Wade a two year old girl with PBD as the event honoree The Alfaros chose to include an honoree this year to represent the children who benefit from the contributions made by those who attended and donated to the event The Global Foundation for Peroxisomal Disorders which received all proceeds from the Dinner Dance funds research through grants assists families by providing support and coordinates an equipment exchange to help offset the exorbitant costs families are faced with when dealing with a diagnosis of PBD ZSD Dr Joseph Hacia of University of Southern California also attended the event Dr Hacia is a recent recipient of a GFPD grant which was made possible by the efforts of GFPD families and supporters like the Alfaros Dr Hacia received 50 000 to investigate potential drugs for therapeutic use in PBD patients His project entitled Neural Cell Resources for PBD ZSD Drug Testing seeks to test all drugs already approved by the Food and Drug Administration for their possible effectiveness in treating symptoms associated with peroxisomal disorders in the Zellweger spectrum As Dr Hacia explained to the crowd gathered at the Alfaro family s Dinner Dance fundraiser testing all FDA approved drugs will provide him and his team of researchers with insights into which drugs may be worth testing

    Original URL path: http://www.thegfpd.org/diego-and-adrians-2nd-annual-dinner-dance-benefits-gfpd (2015-03-27)
    Open archived version from archive

  • Upcoming Ilan-a-thon 5k Race in the News | Global Foundation For Peroxisomal Disorders
    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 Upcoming Ilan a thon 5k Race in the News The Baltimore Guide has written about the upcoming Ilan a thon 5k race The 2nd Annual Ilan a thon will be

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

  • Get to Know 2014 Ilan-a-Thon Honoree Livi Menard | Global Foundation For Peroxisomal Disorders
    to ignore timelines and prognoses How did do you manage the weight of her diagnosis When we were told Livi was a Zellweger baby we basically prepared for her death and then we waited Some days I still feel like I m waiting Not to say that our family hasn t lived our days with Livi to the fullest because we have but her diagnosis is always a shadow hanging over us Any strange movement could be the beginning of her first seizure Or her sneezing this morning could turn into pneumonia that will ultimately take her from us It s an exhausting way to live but we try our best to keep things as normal as possible How did you explain Livi s diagnosis to her older sister Lila We ve been pretty honest with her It s been gradual since Lila was only three and a half when Livi was born She s always known Livi was sick That was blatantly obvious since Lila s best friend has a little sister who is Livi s age Lila noticed the differences blindness was a big one plus the constant doctor visits So when Lila asked about these things we explained that Livi might not grow up For a long time she thought that meant Livi would be a baby forever Then one day completely out of the blue Lila who is now six years old asked if Livi was going to die I think along with listening to Chad and I talk she worked it out in her head Lila knows that we can t predict the future but Livi s illness makes it likely that her life will be shorter than ours It s a hard concept and sometimes she asks crazy questions but we try really hard to listen and answer all of them And I don t hide my feelings I almost always cry when we talk about it but the reality is sad and I want her to know that s okay Is the idea of creating normalcy what led to sending Livi to preschool Yes She goes to school three mornings a week and really seems to enjoy it Her classmates and teachers love her She receives 5 different therapies while at school but she also gets to participate in fun activities like circle time music and crafts She is also consistently using the more sign which is awesome Her time at school has definitely been a transition for me but it feels good to be spreading the Livi love around and also creating awareness about the disorder How did you find a school that was right for Livi We are lucky because our county offers a preschool program to bridge the gap between the end of early intervention and the start of kindergarten Our local school doesn t have a preschool and even though it would be convenient for Livi to be at the same school as Lila this worked in our favor

    Original URL path: http://www.thegfpd.org/get-to-know-2014-ilan-a-thon-honoree-livi-menard (2015-03-27)
    Open archived version from archive



  •