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  • Art for Archer – Meridian, MS | Global Foundation For Peroxisomal Disorders
    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 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

    Original URL path: http://www.thegfpd.org/art-for-archer-meridian-ms (2015-03-27)
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  • Painting for PBDs – Louisville, KY | Global Foundation For Peroxisomal Disorders
    GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps 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

    Original URL path: http://www.thegfpd.org/painting-for-pbds-october-21-2012-louisville-ky (2015-03-27)
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  • Painting for PBDs easels | Global Foundation For Peroxisomal Disorders
    a 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 Painting for PBDs

    Original URL path: http://www.thegfpd.org/painting-for-pbds-october-21-2012-louisville-ky/painting-2 (2015-03-27)
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  • Blog | Global Foundation For Peroxisomal Disorders - Part 8
    deceased children The ALD AMN Global Alliance and Newborn Screening Project While PBD ZSD and ALD or X ALD are different diseases they are related peroxisomal disorders that share many similarities Newborn screening that has been developed to identify boys with X ALD should also identify children with PBD ZSD D bifunctional protein deficiency DBPD and other peroxisomal disorders The ALD AMN Global Alliance is supporting efforts in the United States and the United Kingdom to make this screening a recommended screening for all newborns and they are currently supporting a study led by Dr Tortorelli at the Mayo Clinic that is collecting data on the effectiveness of the screening test However more Dried Blood Spots DBS are needed GFPD is encouraging our families to participate DBS from individuals who have 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 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 cost for Jeff Pamela and Ethan to attend the 2013 GFPD Conference in Lincoln NE this summer Any additional funds raised above what is needed for the Marshall family s conferences experiences will be designated for the GFPD Conference Scholarship Fund and help make attending the conference more affordable for other families For more information please visit the 2nd Annual Pancakes for PBD ZSD event page on Facebook 2nd Annual GFPD Dinner Dance in Denair

    Original URL path: http://www.thegfpd.org/blog/page/8 (2015-03-27)
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  • Blog | Global Foundation For Peroxisomal Disorders - Part 12
    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 born We were incorporated in Oklahoma October 5 2010 and received our tax exempt determination from the IRS shortly thereafter Since incorporation we ve accomplished more than we could have ever imagined We have elected a 7 member Board of Directors and a prestigious 9 member Medical and Scientific Advisory Board We have grown our online support groups via yahoo and facebook We ve compiled information in our PBD Family registry on nearly 200 families affected by this disorder around the world We ve instituted an equipment exchange program so families that are no longer using medical equipment can send it to other families that desperately need it We ve created an information website to be a resource for physicians and families And we hosted our first annual Family and Scientific Conference in Omaha Nebraska bringing together families and physicians from the US Canada and Australia Ginny s disorder has changed our lives in so

    Original URL path: http://www.thegfpd.org/blog/page/12 (2015-03-27)
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  • GFPD Updates | Global Foundation For Peroxisomal Disorders
    please feel free to leave a comment We appreciate all the support to help make GFPD a reality Warm regards Shannon Butalla President Comments Melissa says We are so excited to see everyone this summer in Omaha Please contact Shannon if you need financial assistance to attend Posted on May 11 2011 at 12 07 pm remove action woocommerce before main content woocommerce output content wrapper 10 remove action woocommerce after main content woocommerce output content wrapper end 10 Karen Smith says Thank you Shannon and the rest of the board of directors for all your hard work on the conference Special thanks for you tireless work to help others with funding We look forward to seeing you there Posted on May 11 2011 at 2 15 pm remove action woocommerce before main content woocommerce output content wrapper 10 remove action woocommerce after main content woocommerce output content wrapper end 10 Tracy Whitney says I too want to thank all the GFPD Trustees who are working so hard to make this first conference a success I am so excited to meet all the people I know and consider my very close friends Posted on May 12 2011 at 1 55 am remove action woocommerce before main content woocommerce output content wrapper 10 remove action woocommerce after main content woocommerce output content wrapper end 10 Laura Prince says The Site Looks great its a fantastic achievement and I hope it will really boost awareness of these cruel disorders Posted on May 12 2011 at 5 51 am remove action woocommerce before main content woocommerce output content wrapper 10 remove action woocommerce after main content woocommerce output content wrapper end 10 Caroline Phillipson says Wish I could be there to see you all in person and meet all the little PBD buddies

    Original URL path: http://www.thegfpd.org/gfpd-updates (2015-03-27)
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  • Thank You For Visiting! | Global Foundation For Peroxisomal Disorders
    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 Thank You For Visiting Thanks for visiting the online home of The Global Foundation for Peroxisomal Disorders GFPD We are thrilled you ve dropped by to check us out Forming this foundation has been a huge job as has been the development of this website Please feel free to leave a comment or email us if you have questions about anything you see on this website or suggestions for programs or projects for GFPD We are excited about the future and look forward to working with you to create a better life for all children and families affected by PBDs Comments Shannon says A big thank you to Jessica for her efforts to create an outstanding website for GFPD We look forward to the future of this organization and appreciate involvement from all who know and love someone impacted by PBDs Posted on April 6 2011 at 5 48 am remove action woocommerce before main content woocommerce output content wrapper 10 remove action woocommerce after main

    Original URL path: http://www.thegfpd.org/test (2015-03-27)
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  • Blog | Global Foundation For Peroxisomal Disorders - Part 9
    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 GFPD Conference Scholarship Fund page our website or by mail Spread the word through social media email and or letter campaign about the GFPD the conference and the establishment of the GFPD Conference Scholarship Fund Ask your friends and family to consider making a small donation in honor memory of your child ren family Plan a fundraiser Contact Melissa Gamble GFPD Treasurer for more details and help getting started 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 renovation project in Downtown Lincoln 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/blog/page/9 (2015-03-27)
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