Courtney’s Story

Courtney's Dad 'GETS MAIL' , PML Strikes Again !!!

July 4, 2011 by admin Leave a Comment

Dear Mr. Hewitt, Thank you so much for your response! Somehow, it makes me feel better to know there is someone who totally understands the devastation and heartache our family is currently going thru. I was told today that she is being started on IVIG treatment. They put her on Heparin yesterday evening; and were hoping to remove the catheter from her neck (where she had the plasma exchange treatments), but said her blood was too thin right now to attempt that. Hopefully, they will get that … [Read more...]

Filed Under: AMERICAN [U.S.A.], Courtney's Story Tagged With: A Celebration of Women, anger, antivirals, Awareness of PML, bless my mother, brain biopsy, COURTNEY'S DAD GETS MAIL, Dianna Self, emotions, Heparin, HIV, IMMUNE DIFFICIENCY, Infectious Disease Specialist, IVIG treatment, MRI, MS, plasma exchange treatments, PML - Global Awareness, PML Strikes Again !!!, PML., power of positive thinking, power of prayer, Progressive Multifocal Leukoencephalopathy, sadness, stress, Take Action, viral brain disease, women taking action

PML Strikes Again!!!!

June 10, 2011 by admin 3 Comments

Progressive Multifocal Leukoencephalopathy (PML) A Celebration of Women is here for the Women of our World, WE hear YOU! Below is just one letter received by the grieving father of our very own WOMAN of ACTION - Courtney Leigh Hewitt who died unnecessarily of the JC Virus activated, misdiagnosed and allowed the time to ignite the viral brain disease named PML. Below, you will read the cry and pleas of one more victim to this horrific, under estimated, under appreciated … [Read more...]

Filed Under: Courtney's Story, FEATURED Tagged With: acquired immune deficiency syndrome, brain biopsy, chronic corticosteroid, Courtney Leigh Hewitt, disregarded disease, Hodgkin’s disease, immunosuppressive therapy, Infectious Disease Specialist, JC Virus activated, lymphoma, neurologists, organ transplant patients, plasma exchange treatments, PML., Progressive Multifocal Leukoencephalopathy, sarcoidosis, spinal fluid, viral brain disease, Woman of Action

NORD Foundation – May 2011

May 20, 2011 by admin Leave a Comment

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 … [Read more...]

Filed Under: Courtney's Story Tagged With: A Celebration of Women, advocacy, audiences, brain diseases, chronic sarcoidosis, Commissioner Margaret Hamburg, Congressional Caucus, corticobasal degeneration, Courtney' s Story, disease, education, eNews, enhanced collaboration, European Rare Disease Organization, EURORDIS, government., greater transparency, including medical professionals, industry, information, May 2011, MD, Medical Foods Equity Act, multiple system atrophy, NIH Chemical Genomics Center, NORD Foundation, PML., progressive supranuclear palsy, Rare Disease Org., Recent Drug Approvals, registration, Related Brain Diseases (CurePSP), science-based decision-making, Senator Bob Casey, Tammy Baldwin, viral disease, virus, WOMEN of ACTION™, women taking action, women.

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

May 19, 2011 by admin 13 Comments

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 … [Read more...]

Filed Under: AMERICAN [U.S.A.], CANADIAN, Courtney's Story, FEATURED EVENTS, WORLD EVENTS Tagged With: A Celebration of Women, babies, bigotry, Caesar Voghan, Catherine Anne Clark, Courtney's Story, Dads, daughter, father, father-daughter relationship, feature-length film, film, Florida, gay issues, girls, grandchildren, healthcare, healthcare system, HIV POSITIVE, independent filmmakers, Jealous Gods, Kate King Lynch, life-story of Courtney Hewitt, love, movie, movies, Orlando, race, racism, real life story, religion, sed on a true life Courtney's Story!, Southern Drama, The Courtney Project, Todd Reginald Hewitt, women taking action, womenm of action

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

May 19, 2011 by admin 13 Comments

TODD HEWITT: Mother's Day

May 8, 2011 by admin Leave a Comment

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...]

Filed Under: Courtney's Story, FEATURED Tagged With: A Celebration of Women, a mother's heart, a mother's message, a mother's song, children, Courtney's Story, faith, God, grieving father, message to children, Mother's Day, mother's love, Parents, poem, poetry, prayer, prose, spiritual, spiritual message, Todd Hewitt, WOMEN of ACTION™, women taking action

TODD HEWITT: Mother’s Day

May 8, 2011 by admin Leave a Comment

NORD – Newsletter @ April 2011

April 28, 2011 by admin Leave a Comment

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...]

Filed Under: Courtney's Story, FEATURED Tagged With: A Celebration of Women, Affordable Care Act, AIDS, Australia!, challenges, Compromises, Courtney's Story, CT, Danbury, EURORDIS, HIV, Medicaid Innovation Seeks Ideas, National Organization for Rare, Newsletter @ April 2011, NORD, Orphan Diseases, Orphan Drug Act, PML., Rare Diseases, rarediseases.org, Shriners Hospitals for Children, The Courtney Project, The Innovation Center, Treatment of Rare Diseases, WOMEN of ACTION™, women taking action, women with diseases, women.

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

April 11, 2011 by admin Leave a Comment

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...]

Filed Under: Courtney's Story, FEATURED

NORD: March 2011 Report

March 31, 2011 by admin Leave a Comment

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 … [Read more...]

Filed Under: CONTRIBUTORS, Courtney's Story Tagged With: AIDS, Athletes Rare Disease Champion, Barrett’s Esophagus, Cancer Genome, Chief Scientific Officer (CSO), Courtney's Story, diabetes, heart disease, HIV, Jordan Culbreath, March 2011 Report, Medtronic Global Heroes program, MS, NORD, Phenylketonuria (PKU), PML., Princeton University Running Back, Rare Disease Org., Sage Bionetworks, TB, The Courtney Project, tuberous sclerosis complex, tuberous sclerosis complex (TSC), University of Minnesota Consortium, Vanderbilt-Ingram Cancer Center (VICC)

Courtney's Dad 'GETS MAIL' , PML Strikes Again !!!

PML Strikes Again!!!!

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

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

TODD HEWITT: Mother's Day

TODD HEWITT: Mother’s Day

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

NORD: March 2011 Report

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