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  • The ALD-AMN Global Alliance and Newborn Screening Project | Global Foundation For Peroxisomal Disorders
    been diagnosed with PBD ZSD and DBPD in addition to those of known carriers are needed for the study For more information please visit the ALD AMN Global Alliance website or contact Dr Tortorelli at Mayo Clinic directly by phone 507 266 8158 or email biochemicalgenetics mayo edu Although at this time treatment for PBD ZSD and DBPD are symptomatic an early and correct diagnosis can make a difference for families Many families wait months and even years before receiving a diagnosis of a PBD ZSD or DBPD many receiving multiple incorrect diagnoses along the way If children are identified at birth families will not have to undergo months and years of searching for the cause of their child s delays and health issues Families will also be able to work with their medical team to be proactive in the treatment and intervention of hearing loss vision loss seizures bleeding issues adrenal insufficiency and any other symptoms that arise Additionally families who have a child who has been identified to have X ALD a PBD ZSD or DBPD through a newborn screening will also be aware of their carrier status and thus be able to make an informed decision about the risks and options for future family building This is an international study and we hope that all of our families will choose to participate Comments IRMA MARTINEZ MONTAÑO says Felicidades por el proyecto es una gran labor que permitirá prevenir que nascan más niños con ALD X En Cochabamba Bolivia hemos creado la Fundación Qhana Uj que tiene como objetivo contribuir a la construcción de redes de solidridad dedicadas a la educación y prevención de enfermedades degenerativas de origen genetico desconocemos que en mi país se este realizando alguna investigación sobre la ALD y otras de origen genético El

    Original URL path: http://www.thegfpd.org/the-ald-amn-global-alliance-and-newborn-screening-project (2015-03-27)
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  • 2nd Annual Pancakes for PBD-ZSD in Mt. Zion, IL – May 18, 2013 | Global Foundation For Peroxisomal Disorders
    helps 2nd Annual Pancakes for PBD ZSD in Mt Zion IL May 18 2013 The Marshall family of Illinois will host their 2nd Annual Pancakes for PBD ZSD benefit on Saturday May 18th from 7 00 11 00am at the First Baptist Church in Mt Zion IL The all you can eat pancake and sausage breakfast will raise awareness of PBD ZSD as well as funds to help cover the

    Original URL path: http://www.thegfpd.org/2nd-annual-pancakes-for-pbd-zsd-in-mt-zion-il-may-18-2013 (2015-03-27)
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  • 2nd Annual GFPD Dinner Dance in Denair, CA – October 5, 2013 | Global Foundation For Peroxisomal Disorders
    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 2nd Annual GFPD Dinner Dance in Denair CA October 5 2013 The Second Annual GFPD Dinner Dance benefiting the Global Foundation for Peroxisomal Disorders in memory of Diego and Adrian Alfaro will be held on

    Original URL path: http://www.thegfpd.org/2nd-annual-gfpd-dinner-dance-in-denair-ca-october-5-2013 (2015-03-27)
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  • The Brady Colbert Foundation to Host 4th Annual Bikers for Brady & Birdies for Brady Events | Global Foundation For Peroxisomal Disorders
    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 The Brady Colbert Foundation to Host 4th Annual Bikers for Brady Birdies for Brady Events Ken and Marsha Colbert founded the Brady Colbert Foundation in memory of their son Brady who passed away from the devastating effects of PBD ZSD in 2007 Brady was just 5 months old The Brady Colbert Foundation is a non profit organization dedicated to helping families cope with the diagnosis care taking and death of a terminally ill child by providing a variety of resources in an effort to east the emotional stress and frustration of life s transitions Bikers for Brady will be held on Saturday June 22nd and is a motorcycle poker run with BBQ lunch and live music in Tewksbury Massachusetts The fee to participate is 25 for drivers and 10 for passengers Birdies for Brady will be held on Monday June 24th and is a golf tournament held at the Merrimack Valley Golf Club in Methuen Massachusetts The

    Original URL path: http://www.thegfpd.org/the-brady-colbert-foundation-to-host-4th-annual-bikers-for-brady-birdies-for-brady-events (2015-03-27)
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  • Aspen Pollock in the News | 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 Aspen Pollock in the News Aspen Pollock a thirteen year old girl with a Peroxisome Biogenesis Disorder won first place at the San Benito County Fair for her photograph titled I am Blind but I can See Her story was recently published in the Hollister Free Lance Newspaper

    Original URL path: http://www.thegfpd.org/aspen-pollock-in-the-news (2015-03-27)
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  • Pound the Pavement for PBDs- Tulsa, Ok- “Jogging for Ginny” | Global Foundation For Peroxisomal Disorders
    no strollers are allowed hosted and timed by The Tulsa Run Our Jogging for Ginny team will don our hot pink shirts and run our hearts out for our Sweet Ginny Girl Pick the race that works for your skill level and join us at the Jogging for Ginny Tent near the finish line either before and or after your race for yummy goodies and pictures with Ginny Girl You will need to register for the Tulsa Run online at www tulsarun com or in person at the Tulsa Run office on the southeast corner of 51st and Harvard office is just to the west and adjacent from Food Pyramid The entry fee for the Tulsa Run has increased this year It is now 35 and you will need to pay that directly to the Tulsa Run The cost to be a member of our Jogging for Ginny Team is 20 per person payable to GFPD Your team membership of 20 entitles you to an awesome hot pink Jogging for Ginny Team Shirt goodies after the race and an official Jogging for Ginny Team Photo Non runners are welcome to also join our team get team shirts and join us at the Jogging for Ginny Tent to cheer on our team In addition to the spaghetti dinner and Jogging for Ginny Team membership we are also accepting general donations to GFPD at these events Please consider making a tax deductible donation to GFPD in honor of sweet Ginny Girl Every little bit helps Your contribution will help fund research underway on Peroxisomal Biogenesis Disorders at USC University of Nebraska Medical Center Johns Hopkins University and McGill University and support families through our online support group equipment exchange and by funding scholarships for families and medical professionals to our annual Conference Thank you in advance for your support and help To pay for the spaghetti dinner a Jogging for Ginny team membership or to make a general donation to GFPD please click the link to the right Checks may also be sent to GFPD Attn Jogging for Ginny 5147 S Harvard Ave Suite 181 Tulsa Ok 74135 A NOTE FROM BRANT AND MEL We are jogging for Ginny because on May 24 2010 we got news that would change our lives forever We learned that our sweet Ginny Girl then 21 months old was born with a rare genetic progressive and terminal condition called Peroxisome Biogenesis Disorder In the days and weeks that followed we felt so alone so lost In July of 2010 we were able to connect via the internet with other families on this same journey but I Mel knew we had to do more than simply connect with these other families on facebook We had to do something to unite ourselves around one cause to create a stronger community and as a result have a stronger voice in the medical and scientific community Thanks to the support of our family and friends here in Tulsa GFPD was

    Original URL path: http://www.thegfpd.org/pound-the-pavement-for-pbds-tulsa-ok-jogging-for-ginny (2015-03-27)
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  • First ever multi-cellular model of rare disease developed at the University of Alberta | 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 First ever multi cellular model of rare disease developed at the University of Alberta September 23 2011 First ever multi cellular model

    Original URL path: http://www.thegfpd.org/first-ever-multi-cellular-model-of-rare-disease-developed-at-the-university-of-alberta (2015-03-27)
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  • Zellfest 2012 | Global Foundation For Peroxisomal Disorders
    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 Zellfest 2012 Jennifer Murphy and her son Clayton were featured on the news in San Antonio to talk about Zellfest

    Original URL path: http://www.thegfpd.org/zellfest-2012 (2015-03-27)
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