NORD Foundation – May 2011

May 2011 ~  eNews NORD to Co-sponsor 1st Annual Rare Diseases/Orphan Products Summit NORD will co-sponsor the 1st Annual Rare Diseases/Orphan Products Summit on Oct 11-13, under the auspices of the Drug Information Association (DIA). Collaborating organizations include EURORDIS (the European Rare Disease Organization), FDA, NIH, and Duke Clinical Research Institute. In addition to plenary sessions with senior government, industry, and patient speakers, there will be three tracks at the … [Read more...]

PRESS RELEASE …based on a true life Courtney’s Story!

    A Celebration of Women   is elated to announce to the Women of our World the following PRESS RELEASE. A Celebration of Women is a Global Women's Advocacy Foundation created to inspire all women to step up and Take Action! This is accomplished through a marketing model of ‘Celebrating the Lives’ of Women Leaders , our WOMEN of ACTION, that are trailblazing, in one way or another, our path in this new millennium, for the further establishment of Gender Equity and Women's- Human Rights! " * … [Read more...]

PRESS RELEASE …based on a true life Courtney's Story!

    A Celebration of Women   is elated to announce to the Women of our World the following PRESS RELEASE. A Celebration of Women is a Global Women's Advocacy Foundation created to inspire all women to step up and Take Action! This is accomplished through a marketing model of ‘Celebrating the Lives’ of Women Leaders , our WOMEN of ACTION, that are trailblazing, in one way or another, our path in this new millennium, for the further establishment of Gender Equity and Women's- Human Rights! " * … [Read more...]

TODD HEWITT: Mother's Day

Mother's Day Today is just another day on a calendar made by man For all the days past and still yet to come Mourn not for me but rejoice for your day will also come It won't be marked on a calendar so plans need not be made You see God has a plan that has already been laid! Perhaps, by the moonlight on a bright starry night Perhaps on a bright sunny day Perhaps in the Spring during a soft gentle rain With death comes pain and most times grief … [Read more...]

TODD HEWITT: Mother’s Day

Mother's Day Today is just another day on a calendar made by man For all the days past and still yet to come Mourn not for me but rejoice for your day will also come It won't be marked on a calendar so plans need not be made You see God has a plan that has already been laid! Perhaps, by the moonlight on a bright starry night Perhaps on a bright sunny day Perhaps in the Spring during a soft gentle rain With death comes pain and most times grief … [Read more...]

NORD – Newsletter @ April 2011

    Forward this to a friend April 2011 eNews New Consortium Promotes Global Approach to Rare Diseases NORD and other patient advocates participated in the recent launch in Washington, DC of a new international consortium to promote global collaboration on rare diseases and orphan products. The International Rare Disease Research Consortium (IRDiRC) has set some ambitious goals, including the development of 200 new rare disease treatments by the year 2020 and the … [Read more...]

PML – Rare infection of the brain caused by the JC VIRUS

  Progressive multifocal leukoencephalopathy ... is a rare infection of the brain that is caused by the JCvirus.   People with a weakened immune system are most likely to get the disorder. People may become clumsy, have trouble speaking, and become partially blind, while mental function declines rapidly. Death usually occurs within 9 months. Imaging of the head and a spinal tap are done. Treating the disorder that weakened the immune system may … [Read more...]

NORD: March 2011 Report

    March 2011 eNews NORD Welcomes Five New Board Members Five noted leaders in the rare disease community have been elected to the NORD Board of Directors. Details. NORD Forming Coalition on Medical Foods Issue At a conference hosted by NORD in Washington DC last month, approximately 80 patient advocates, physicians, genetic metabolic dietitians, and others agreed to form an ongoing coalition to address problems related to accessing the medical foods required for treatment of … [Read more...]

Courtney’s Story – The New ABC’s of Life…

  The NEW A B C's of LIFE!!  ... our world's brand new alphabet     As most of you know by now, "Courtney's Story",  has grown and has now become a Global Phenomenon raising awareness around the World of PML.       You are probably thinking to yourself that PML are just three of the twenty six letters that make up our alphabet. True, they are just that! However, in today's society and in the world in which we all live. The alphabet we have all been raised on and learned even before … [Read more...]

Courtney's Story – The New ABC's of Life…

  The NEW A B C's of LIFE!!  ... our world's brand new alphabet     As most of you know by now, "Courtney's Story",  has grown and has now become a Global Phenomenon raising awareness around the World of PML.       You are probably thinking to yourself that PML are just three of the twenty six letters that make up our alphabet. True, they are just that! However, in today's society and in the world in which we all live. The alphabet we have all been raised on and learned even before … [Read more...]

Courtney Leigh Hewitt Scholarship 2010 – Skyler Parker

    Skyler Parker, Winner 2010       Courtney Leigh Hewitt Scholarship 2010 Skyler Parker, as the proud recipient of 2010 Courtney Leigh Hewitt Scholarship, says   " I am extremely honored beyond words to receive this award! "     Without ever having the pleasure and opportunity of getting to know this amazing, incredible human being. I humbly accept this award and will use it to further my education and become a Nurse, a life long dream of mine! Currently, I am enrolled in the Nursing … [Read more...]

Courtney Leigh Hewitt Scholarship Fund – Pure Joy Ministries

    A Celebration of Women is honored to announce the establishment and first recipient of:     The 2009 Recipient of the 'Courtney Leigh Hewitt Scholarship' given by     Pure Joy Ministries   Pure Joy Ministries...is a non-denominational Ministry founded by Billy and Tracy Varn from Orangeburg, South Carolina. Billy and Tracy have been married for 25 years and have four beautiful children, three sons and a daughter. This amazing family have and hold strong Christian beliefs! Pure Joy … [Read more...]

Courtney's Story – The Times and Democrat

    COURTNEY'S STORY: Father turns anger over daughter's death... into mission to educate others about PML Todd Hewitt is on a mission to spread the word about a little-known disease that took the life of his beloved 31-year-old daughter two years ago.   The former Orangeburg resident's daughter, Courtney Leigh, died of progressive multifocal leukoencephalopathy, a condition that even the specialists treating Courtney weren't aware of. "Her doctors didn't know what PML was. They hadn't even … [Read more...]

Courtney’s Story – The Times and Democrat

    COURTNEY'S STORY: Father turns anger over daughter's death... into mission to educate others about PML Todd Hewitt is on a mission to spread the word about a little-known disease that took the life of his beloved 31-year-old daughter two years ago.   The former Orangeburg resident's daughter, Courtney Leigh, died of progressive multifocal leukoencephalopathy, a condition that even the specialists treating Courtney weren't aware of. "Her doctors didn't know what PML was. They hadn't even … [Read more...]

NORD February 2011 eNEWS

  Forward this to a friend February 2011 eNews Countdown Begins to Rare Disease Day 2011 Across the nation and around the world, the rare disease community is preparing for Rare Disease Day 2011. To show your support, click on the countdown device to get a version that you can post on your website or blog. If you haven’t done so lately, be sure to visit the U.S. Rare Disease Day website and the global Rare Disease Day site to see what’s happening in the U.S. and around the … [Read more...]

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