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  • Pound the Pavement for Peter 2015 | Global Foundation For Peroxisomal Disorders
    for Peter 2015 Contributed by GFPD Vice President Anne Park Hopkins Pound the Pavement for Peter is a Family 5K Run in Atlanta that was started in honor of my son Peter Hopkins who lost his life to a Peroxisomal Disorder in 2010 when he was just shy of 4 years old As with many of your children with PBD s he spent his life with numerous disabilities and this race is to raise money and awareness for organizations that provide research and support for children like Peter to increase their quality of l ife and realize their greatest potential The proceeds this year will fund 3 critical aspects for children with disabilities Research Medical Care and Inclusion in Education The specific charities we will support this year are the Global Foundation for Peroxisomal Disorders the Adaptive Learning Center and the Palliative Care Program at Children s Healthcare of Atlanta One third of the raised will go to our Global Foundation for Peroxisomal Disorders Help us raise more money for our Foundation by either a MAKE A DONATION BELOW or b BECOME A FUNDRAISER yourself It is easy and you can send an email out to your friends for donations

    Original URL path: http://www.thegfpd.org/pound-the-pavement-for-peter-2015 (2015-03-27)
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  • High School Robotics Team Creates Car for GFPD Kid | Global Foundation For Peroxisomal Disorders
    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 High School Robotics Team Creates Car for GFPD Kid A high school robotics team in Illinois built and donated a custom motorized car to Ethan a

    Original URL path: http://www.thegfpd.org/high-school-robotics-team-creates-car-for-gfpd-kid (2015-03-27)
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  • GFPD Make-a-Wish Kid Donates Wish | Global Foundation For Peroxisomal Disorders
    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 Make a Wish Kid Donates Wish Levi a boy with PBD who is not well enough to travel for his Make a Wish vacation donated his trip to his best friend Emma Emma went on Levi s trip to Florida

    Original URL path: http://www.thegfpd.org/gfpd-make-a-wish-kid-donates-wish (2015-03-27)
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  • GFPD Families in the News | Global Foundation For Peroxisomal Disorders
    their greatest potential The proceeds this year will fund 3 critical aspects for children with disabilities Research Medical Care and Inclusion in Education The specific charities we will support this year are the Global Foundation for Peroxisomal Disorders the Adaptive Learning Center and the Palliative Care Program at Children s Healthcare of Atlanta One third of the raised will go to our Global Foundation for Peroxisomal Disorders Help us raise more money for our Foundation by either a MAKE A DONATION BELOW or b BECOME A FUNDRAISER yourself It is easy and you can send an email out to your friends for donations I can set up your own site for you https runsignup com anneparkhopkins is my donation page No donation is too small and every cent will be appreciated and used to the fullest Help us spread the word and make a difference Let me know if you want to become a Fundraiser as well Message me or email me at aphopki icloud com and I will sign you up Anne Park Hopkins High School Robotics Team Creates Car for GFPD Kid February 11th 2015 A high school robotics team in Illinois built and donated a custom motorized car to Ethan a child with PBD Great work Mars Wars team http www centralillinoisproud com story d story metamora robotics team donates car to easter seals 28149 EtVsB6QB3EqBmaGfHsgPoA GFPD Make a Wish Kid Donates Wish February 11th 2015 Levi a boy with PBD who is not well enough to travel for his Make a Wish vacation donated his trip to his best friend Emma Emma went on Levi s trip to Florida and she took Flat Levi along with her Read about Levi and Emma s friendship and view pictures from her trip http www huffingtonpost com 2015 01

    Original URL path: http://www.thegfpd.org/category/gfpd-families-in-the-news (2015-03-27)
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  • GFPD Family Spotlight | Global Foundation For Peroxisomal Disorders
    contributor to his language development How did you manage Archer s diagnosis with your other children The older two have heard the term terminal although we do not bring it up often They have gone to the conferences and I know they pick up on a lot more than we openly discuss They ve also attended many of Archer s appointments and tests early on You mentioned your husband is in the military Is he able to attend Archer s appointments with you My husband was able to attend several doctors appointments at our previous duty station which helped tremendously We ve also been fortunate that he was able to take leave to attend the GFPD conferences We hope to be reunited in the fall Are you in touch with other parents in the GFPD If so what advice has been most helpful to you and your family We keep in touch with the Facebook group mostly I have plans to visit another PBD family in the next two weeks actually which I am so thrilled about The medical information shared and the experience of others is so helpful in guiding us toward treatment options Thank you Ashley for sharing your story And our thanks to Jennifer Hazard of the blog Cute Potato for her support and contribution If you d like us to highlight your family s PBD story email Communications Coordinator Heidi Harris at heidi gfpd org Get to Know 2014 Ilan a Thon Honoree Livi Menard May 8th 2014 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

    Original URL path: http://www.thegfpd.org/category/gfpd-family-spotlight (2015-03-27)
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  • GFPD News | Global Foundation For Peroxisomal Disorders
    little bit helps Posts in GFPD News GFPD Medical Advisory Board Member Awarded NIH Grant October 26th 2014 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 secure the grant funds from the National Institute of Health National Center for Advancing Translational Sciences NCATS Read the press release from the University of Nebraska Medical Center and an article in the Lincoln Journal Star for comments from Dr Rizzo and Shannon Butalla on how the grant money will advance the study of PBDs PauseforPBDs on October 5 2014 September 20th 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 silence be creative Reflect honor and remember a loved one impacted by PBD Share your experiences in words photos or videos on your own Facebook Instagram or Twitter accounts and be sure to PauseforPBDs Sunday October 5 2014 Join us on Facebook and spread the word Recent advancements in PBD research September 3rd 2014 Exciting news about recent advancements in the study of peroxisomal disorders at the University of Alberta We are lucky to have Dr Richard Rachubinski on our Medical 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 GFPD President on Rare Disease Fundraising and the Ice Bucket Challenge August 25th 2014

    Original URL path: http://www.thegfpd.org/category/gfpd-news (2015-03-27)
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  • GFPD Newsletters | Global Foundation For Peroxisomal Disorders
    Posts in GFPD Newsletters GFPD Summer 2014 e Newsletter May 27th 2014 Read the GFPD 2014 Summer e Newsletter for GFPD news our Family Spotlight story about the Menard family and an update about the GFPD funded clinical trial of Betaine in patients with PBD ZSD GFPD Summer 2014 e Newsletter 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 GFPD Fall 2013 e Newsletter October 22nd 2013 Read the GFPD 2013 Fall e Newsletter for updates on GFPD news our Family

    Original URL path: http://www.thegfpd.org/category/gfpdnewsletters (2015-03-27)
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  • Rare Disease Community News | Global Foundation For Peroxisomal Disorders
    by Peroxisome Biogenesis Disorders Release a balloon say a prayer light a candle meditate have a moment of silence be creative Reflect honor and remember a loved one impacted by PBD Share your experiences in words photos or videos on your own Facebook Instagram or Twitter accounts and be sure to PauseforPBDs Sunday October 5 2014 Join us on Facebook and spread the word Recent advancements in PBD research September 3rd 2014 Exciting news about recent advancements in the study of peroxisomal disorders at the University of Alberta We are lucky to have Dr Richard Rachubinski on our Medical 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 GFPD President on Rare Disease Fundraising and the Ice Bucket Challenge August 25th 2014 GFPD President Shannon Butalla recently shared some thoughts on the Ice Bucket Challenge benefiting ALS research and on the work of generating awareness for rare diseases Read her comments in the Lincoln Journal Star http journalstar com news local cindy lange kubick going beyond the ice bucket article f42da061 e6c4 50d1 8ef6 f82d8bd3e5cc html Invitation to FDA Public Meeting on Neurologic Manifestations of Inborn Errors of Metabolism May 13th 2014 The FDA is looking for patient advocate voices at their Public Meeting on Neurologic Manifestations of Inborn Errors of Metabolism Read on for information about attending the meeting in person or via webcast on June 10 2014 Dear patient stakeholder We invite you to attend an upcoming public meeting on neurologic manifestations of inborn errors of metabolism as part of FDA s Patient Focused Drug Development initiative The goal of the meeting is to hear patient perspectives on the impact of neurologic manifestations of

    Original URL path: http://www.thegfpd.org/category/rare-disease-community-news (2015-03-27)
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