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  • Research Updates | Global Foundation For Peroxisomal Disorders
    Advisory Board and to work closely with Dr Andrew Simmons as well We are so grateful for the important work these researchers are doing https www youtube com watch v SbUEzguv6nA sns fb Winter 2013 President s Letter December 3rd 2013 Dear Friends Holiday greetings from The Global Foundation for Peroxisomal Disorders We have many reasons to celebrate this year with advancements and discoveries that could help children with Peroxisome Biogenesis Disorder Zellweger Spectrum Disorder PBD ZSD in the near future The GFPD marked its three year anniversary in October and we re ecstatic about the impact we ve had on families and science in this short time Our community of parents children and professionals thank you for your emotional and financial support We have greater hope for the future of our children because of your generosity compassion and commitment to the GFPD Continue reading the President s Letter Best wishes Shannon Butalla President The Global Foundation for Peroxisomal Disorders NORD Salutes Congress for Passing Pediatric Research Bill November 15th 2013 The National Organization for Rare Disorders NORD has announced its support for Congress passage of the National Pediatric Research Network Act which promotes medical research on pediatric diseases and in particular on rare diseases affecting children The bill now awaits President Obama s signature Click below to read the NORD announcement http campaigns rarediseases us t ViewEmail r 01E40045C95ADF6F2540EF23F30FEDED D2D2A98CCB7109284936C359EC0425C0 Diego and Adrian s 2nd Annual Dinner Dance Benefits GFPD October 21st 2013 GFPD Dinner Dance October 5 2013 Turlock CA The Alfaro family of Turlock CA hosted the second annual Dinner Dance in memory of their two angel children Diego Adrian Both brothers were diagnosed with Peroxisome Biogenesis Disorder Zellweger Spectrum Disorder PBD ZSD and before they passed their parents Carolina and Jose promised to keep their memories alive More than 250 guests attended the Dinner Dance to help the Alfaros keep that promise raising funds for the GFPD in their sons honor Event attendees were treated to dinner live music 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

    Original URL path: http://www.thegfpd.org/category/research-updates (2015-03-27)
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  • Uncategorized | Global Foundation For Peroxisomal Disorders
    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 Posts in Uncategorized NORD Provides New State Insurance Information August 27th 2013 The

    Original URL path: http://www.thegfpd.org/category/uncategorized (2015-03-27)
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  • GFPD Medical Advisory Board Member Awarded NIH Grant | Global Foundation For Peroxisomal Disorders
    Updates Uncategorized Make a donation to help support our cause Every little bit helps GFPD Medical Advisory Board Member Awarded NIH Grant Congratulations to GFPD Medical Advisory Board member Dr William Rizzo who has received a five year 3 3 million grant to study rare diseases including Peroxisome Biogenesis Disorder Zellweger Spectrum Disorder GFPD President Shannon Bu talla contributed a letter of support of Dr Rizzo s work to help

    Original URL path: http://www.thegfpd.org/gfpd-medical-advisory-board-member-awarded-nih-grant (2015-03-27)
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  • GFPD Family Organizes Vigil for Infant Loss Rememberance Day | Global Foundation For Peroxisomal Disorders
    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 Family Organizes Vigil for Infant Loss Rememberance Day Meagan Holt mother to Madeline and Olivia organized a candle lighting event in Everett WA to mark Pregnancy and Infant Loss Remembrance Day Meagan organized the event in part to remember

    Original URL path: http://www.thegfpd.org/gfpd-family-organizes-vigil-for-infant-loss-rememberance-day (2015-03-27)
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  • Blog | Global Foundation For Peroxisomal Disorders - Part 3
    by May 27 2014 Patients and caretakers who are attending in person and are interested in providing comments as part of an initial panel discussion may indicate so in their registration Panelists will be confirmed prior to the meeting A public comment docket is also available which provides patients and others another opportunity to share their experiences and perspectives with FDA online or through the mail For more information visit the FDA website http www fda gov Drugs NewsEvents ucm387057 htm We look forward to this exciting meeting and hope to see you there If you have any questions please feel free to contact us at PatientFocused fda hhs gov Get to Know 2014 Ilan a Thon Honoree Livi Menard by Jennifer Hazard of CutePotato com Recently I had the privilege of interviewing Jen Menard mother to this year s Ilan a thon honoree 3 year old Livi Menard As a mother of two and godmother to a 19 month old nephew with PBD Jen s thoughtful answers meant a great deal I m inspired by her honesty and her gentle way of spreading the Livi love around How did Livi become this year s honoree Mousumi Bose Ilan s mom asked if Livi would like to be the honoree while we were attending the GFPD Family Scientific conference in Nebraska last year What does the honor mean to your family I think having Livi and other PBD kids at the race helps participants see what their contribution means It s also so rewarding to see everyone come out to the race and show their support Livi is 3 years old What have you learned about PBD along the way The most helpful piece of information I have learned through our journey is PBD kids do not fit a mold We ve tried hard 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

    Original URL path: http://www.thegfpd.org/blog/page/3 (2015-03-27)
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  • Blog | Global Foundation For Peroxisomal Disorders - Part 4
    Peter and view pictures from this year s event at www poundthepavementforpeter com Madeline Holt in the News Sixteen month old Madeline Holt is in the news along with her mother Meagan Meagan is the 2014 Snohomish County March for Babies Ambassador in Washington state Read about the Holt family here http edmondsbeacon villagesoup com p march for babies ambassador inspires hope 1168766 And read more about the diagnosis and impacts of Peroxisomal Biogenesis Disorder Zellweger Spectrum Disorder here http www thegfpd org for doctors for doctors and here http www thegfpd org for doctors for therapists GFPD Family Profiled on CutePotato com In honor of World Rare Disease Day blogger Jennifer Hazard wrote about her nephew Jack and his life with PBD ZSD on her website Cute Potato http cutepotato com 2014 02 28 show your love redux running for hope We love hearing about Jack s recent successes and look forward to seeing him along with his family at the Ilan a thon 5k Family Run in Baltimore MD in June GFPD Families Celebrate World Rare Disease Day 2014 GFPD families are celebrating World Rare Disease Day by wearing jeans Here are just a few pictures of our

    Original URL path: http://www.thegfpd.org/blog/page/4 (2015-03-27)
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  • Blog | Global Foundation For Peroxisomal Disorders - Part 5
    cause Every little bit helps Support GFPD with AmazonSmile Now when you shop at AmazonSmile Amazon with donate to Global Foundation for Peroxisomal Disorders Support GFPD every time you shop Global Foundation For Peroxisomal Disorders GFPD Joins Global Genes RARE Foundation Alliance The Global Foundation for Peroxisomal Disorders has joined with the Global Genes Project in their RARE Foundation Alliance The Alliance was formed in 2013 to build a stronger collective impact in the rare disease community by uniting rare disease foundations in a shared commitment to advocacy The GFPD joins more than 135 other rare disease foundation members in this effort Read about the RARE Foundation Alliance on the Global Genes Project website here Winter 2013 President s Letter Dear Friends Holiday greetings from The Global Foundation for Peroxisomal Disorders We have many reasons to celebrate this year with advancements and discoveries that could help children with Peroxisome Biogenesis Disorder Zellweger Spectrum Disorder PBD ZSD in the near future The GFPD marked its three year anniversary in October and we re ecstatic about the impact we ve had on families and science in this short time Our community of parents children and professionals thank you for your emotional and financial support We have greater hope for the future of our children because of your generosity compassion and commitment to the GFPD Continue reading the President s Letter Best wishes Shannon Butalla President The Global Foundation for Peroxisomal Disorders NORD Salutes Congress for Passing Pediatric Research Bill The National Organization for Rare Disorders NORD has announced its support for Congress passage of the National Pediatric Research Network Act which promotes medical research on pediatric diseases and in particular on rare diseases affecting children The bill now awaits President Obama s signature Click below to read the NORD announcement http campaigns

    Original URL path: http://www.thegfpd.org/blog/page/5 (2015-03-27)
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  • Blog | Global Foundation For Peroxisomal Disorders - Part 10
    Patterson Park is one of the oldest parks in Baltimore with a rich cultural and natural history and just a few miles away from the Kennedy Krieger Institute For registration and more information about Ilan a thon and other events supporting Ilan a thon please visit http www ilanathon org Watch our Ilan a thon PSA for more details Art for Archer Meridian MS By Ashley Maple Our community of Meridian Mississippi came together on October 20 2012 for Art for Archer The idea for this event came from my own home life with my children I would save all of their artwork from the year and then we would have a small art sale in our home for friends and family We would then choose a charity to donate the money to I wanted my children to know their art is valuable and can help others in need Art for Archer showcased some of my photos crocheted items jewelry art from my children and many other donated arts and crafts Finding creative outlets to channel my heartache has been essential to me In a way Art for Archer has allowed me to turn an ugly disorder and heartache into something beautiful and allowed me to do something for Archer and other children that share his disorder Art for Archer was covered by local news media Painting for PBDs Louisville KY By Bethany Barno To mark the one year anniversary of our son Chase s death we hosted Painting for PBDs at Uptown Art Uncorked in Louisville KY We wanted to do something special to celebrate his life and raise money for those who still struggle with these horrible disorders Our event was a wonderful way to get people together to remember Chase raise awareness for PBD ZSD and raise

    Original URL path: http://www.thegfpd.org/blog/page/10 (2015-03-27)
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