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  • GFPD Families Celebrate World Rare Disease Day 2014 | 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 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 supporters To learn more about Rare Disease Day and

    Original URL path: http://www.thegfpd.org/gfpd-families-celebrate-world-rare-disease-day-2014 (2015-03-27)
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  • Save the Date for Pound the Pavement for Peter in Atlanta, GA | Global Foundation For Peroxisomal Disorders
    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 Save the Date for Pound the Pavement for Peter in Atlanta GA Save the date for the Pound the Pavement for Peter 5k Race This year s race will be held on Saturday March

    Original URL path: http://www.thegfpd.org/save-the-date-for-pound-the-pavement-for-peter-in-atlanta-ga (2015-03-27)
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  • Blog | Global Foundation For Peroxisomal Disorders - Part 2
    to Sophie 10 Lydia 8 Madden 6 and Archer who has PBD and turns 4 in September discusses what it s like to raise a big family and find balance in the day to day at her home in Havelock North Carolina With four children I m curious how you manage each day Do you have help It is very challenging raising four children We stopped homeschooling a year ago because I was so overwhelmed School outside of the home has helped me find some balance coupled with finding a fantastic preschool program for Archer My husband is currently deployed so two of my children are spending the summer with family which is also a huge help What are some of the challenges you face on a daily basis The biggest challenge is to give the children what they need individually and to be fully present for them I am often emotionally and or physically exhausted so making and enjoying the time with my typically developing kids is always a challenge It is hard to find activities that we can all enjoy together or to always find a sitter for Archer Often times we split up For example my husband might take the three older kiddos to a movie and I ll stay home with Archer And what are some of the joys Archer is of course a blessing He makes us laugh and smile daily and we delight in his every accomplishment He reminds me that every day is a tremendous gift And I believe my older children have developed a great compassion from having a sibling with special needs Are you able to find time for yourself Or is that impossible at this stage This was our first year that we did not homeschool and it was a necessary break for me I was overwhelmed trying to homeschool with Archer home full time I have really enjoyed the break from being so busy although I feel we will return to homeschooling at some point Making time for myself makes me a much better mom and wife What has Archer s preschool experience been like It has been an amazing learning experience for him Archer is very social and he has thrived in his preschool His class integrates typical and special needs children and they do all classroom activities together Archer also receives therapy at his preschool and his therapists work closely with his caregivers to make sure his needs are met throughout the day Have you noticed changes in Archer s development He recently began walking at almost four years old His balance is still unstable and he cannot stand up unassisted but walking has been the most exciting accomplishment for him He wants to walk so badly Archer is also able to copy most words he hears although not always very clearly I believe his preschool environment has been the biggest contributor to his language development How did you manage Archer s diagnosis with your other children

    Original URL path: http://www.thegfpd.org/blog/page/2 (2015-03-27)
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  • Blog | Global Foundation For Peroxisomal Disorders - Part 6
    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 further for their specific

    Original URL path: http://www.thegfpd.org/blog/page/6 (2015-03-27)
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  • GFPD Joins Global Genes RARE Foundation Alliance | 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 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

    Original URL path: http://www.thegfpd.org/gfpd-joins-global-genes-rare-foundation-alliance (2015-03-27)
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  • Kennedy Krieger Institute Launching Moser Center for Leukodystrophies | 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 Kennedy Krieger Institute Launching Moser Center for Leukodystrophies The Kenney Krieger Institute of Baltimore MD is launching the Moser Center for Leukodystrophies The Moser Center named for the late Hugo W Moser will focus on

    Original URL path: http://www.thegfpd.org/kennedy-krieger-institute-launching-moser-center-for-leukodystrophies (2015-03-27)
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  • Blog | Global Foundation For Peroxisomal Disorders - Part 7
    2013 07 22 3047707 clayton child with rare disease html Ilan a thon 5k Race 2013 By Mousumi Bose The First Annual Ilan a thon Memorial 5K benefiting the GFPD took place on April 21 2013 in Patterson Park Baltimore MD We organized this event to celebrate and honor the life of our son Ilan and raise awareness for PBD ZSD Throughout our year of planning for the race we acquired over 20 corporate sponsors and 15 family sponsors Our flagship sponsor was Bayada Pediatrics the home health care agency that provided Ilan with home nursing care during his life The turnout for the race was overwhelming with more than 380 individuals registered In addition to race participants others very generously donated their time and services to our event by providing balloon animals and face painting for the children Overall it was a really fun albeit slightly chilly day that raised around 17 000 for the GFPD We are so thankful to our GFPD families that were in attendance including the Menard Woodbury Everngam and Goffaux families The Sacra family including Ilan a thon honoree TJ were also present We are so grateful to GFPD President Shannon Butalla GFPD Treasurer Melissa Gamble and our Ilan a thon committee all of whom really were instrumental in making this such a successful event And of course we are so grateful for all of the local support for this race in memory of our boy We are looking forward to doing this again next year See more pictures from Ilan a thon at http ilanathon org Photos php Flight For Phoenix By Faune Meise When we first began our fundraising journey so Phoenix and I could attend the 2013 GFPD Conference in the US we were completely overwhelmed by all the rules and legalities entailed We were incredibly lucky when through Phoenix Early Intervention teacher we were introduced to a local charity called Kids In Need KIN are an association who raise funds for ill and disabled children They are truly the heart of our community though relatively unknown They saw our need for information and support and willingly took us on and opened a trust account so all donations were tax deductable We found people were more willing to donate their hard earned money when it was going through a registered charity We initially set our goal at 10 000 to cover airfare accommodation food and everything in between and we were so surprised when almost immediately a group in our area wanted to donate 1 000 What a start April 6th was our first official fundraiser for Phoenix It was a sports competition where each team of 7 10 people paid their 200 fee and competed against other each in volleyball soccer dodge ball netball sand darts and blind volley We had 10 teams and each wore a different colour We ran raffles and had a bbq and canteen Everything was donated from the winning teams prizes through to all the

    Original URL path: http://www.thegfpd.org/blog/page/7 (2015-03-27)
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  • Upcoming Event: First Annual Ilan-a-thon 5K Memorial Run/Walk | Global Foundation For Peroxisomal Disorders
    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 Upcoming Event First Annual Ilan a thon 5K Memorial Run Walk by Mousumi Bose On April 21 2013 we will be holding the First Anual Ilan a thon 5K Memorial Run Walk benefiting the GFPD in Patterson Park in Baltimore City MD This event will be held in memory of our son Ilan Betzer who passed away October 2011 from the effects of PBD ZSD at the age of 14 months Individual and sponsorship registration is now open at http ilanathon2013 eventbee com All proceeds will benefit the GFPD The race honoree for our First Annual Ilan a thon will be T J Sacra son of Katie and Ted Sacra The Sacra family is originally from Maryland and moved to South Carolina a few years ago Our location 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

    Original URL path: http://www.thegfpd.org/upcoming-event-first-annual-ilan-a-thon-5k-memorial-runwalk (2015-03-27)
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