2014 PML AWARENESS RUN & WALK – OCT 11 (Orlando)

Dear Friends and Supporters, Now in existence for over 5 years, The Courtney Project www.the-courtney-project.org continues to strive to expand its programs and offerings to the community. We hope that you will be able to take part in one or more of the many exciting events that we are offering this year and experience firsthand the pride we take in supporting our cause. It is our mission to increase global awareness of Progressive Multifocal Leukoencephalopathy (PML) a rare viral … [Read more...]

Release of Courtney’s Story: Through Her Father’s Eyes by Reginald Todd Hewitt

ANNOUNCEMENT: Announcing the release of Courtney’s Story: Through Her Father’s Eyes by Reginald Todd Hewitt. ABOUT: This book is a true account of the events that took place throughout Courtney’s adult life. From the moment she found out she was HIV positive to her untimely death from a misdiagnosis of PML Disease, is depicted throughout the 6 chapters. How her family dealt with this tragedy is also recounted throughout the book. Her four children lost their mother at a very … [Read more...]

The Courtney Project.org is Taking Action with Fabian Morales!

  The video will be available for order along with the beautiful PML Awareness Lapel Pin.     With a Donation of $25 or more to The Courtney Project The Courtney Project.org you will receive a copy of Courtney's Story written by Reginald Todd Hewitt and your very own awareness pin to show your support!     Fabian Morales, a Colombian born Film Producer/Director has graciously offered his time and many talents and has become the newest member of Team … [Read more...]

Courtney’s Spirit is Taking Action – What is PML?

What is PML...???? Progressive Multifocal Leuko Encephalopathy. Courtney Leigh Hewitt PML can also occur in organ transplant patients, people undergoing chronic corticosteroid or immunosuppressive therapy, and people that have certain cancers, such as Hodgkin's disease, lymphoma, and sarcoidosis. PML disease most commonly occurs in anyone who has ever had the Chickenpox or has a weakened or compromised Immune System and affects the central nervous system and brain. The symptoms … [Read more...]

NORD Foundation ~ October 2011

  October 2011 eNews Nearly 400 Participate in NORD Conference At the U.S. Conference on Rare Diseases and Orphan Products in Washington DC Oct. 11-13, NORD released a major new study documenting flexibility in the Food and Drug Administration (FDA) review of potential treatments for patients with rare diseases.  The study examined the approval of 135 non-cancer orphan drugs since 1983.  Read the report and NORD’s press release. Speakers Include NIH Director, Social … [Read more...]

WOMAN of ACTION™ – Courtney Leigh Hewitt

A Celebration of Women™ is honored to Celebrate the Life through this Tribute to a Caring, Compassionate, Courageous, Giving and Strong Woman! This Woman's dying wish was to share her Story so that as many people possible could be educated on the elusive traits of a disease named PML. The Courage and Strength that she maintained during her experience with this disease is an Inspiration to One & All. In the words of her Father: '...before Courtney lost her ability to speak, she asked me … [Read more...]

NORD: 1st Annual U.S. Conference On Rare Diseases & Orphan Products‏

Stellar Lineup of Speakers Announced for U.S. Conference On Rare Diseases And Orphan Products Join all stakeholders – patient advocates, researchers, government, industry, investors – in this 1st Annual Summit featuring thought leaders and focusing on collaboration! You are invited to the 1st Annual U.S. Conference on Rare Diseases and Orphan Products to be hosted by the National Organization for Rare Disorders (NORD) and the Drug Information Association (DIA). Additional support … [Read more...]

NORD e-News: July 2011 Edition

NORD e-News: July 2011 Edition Send a Message to Congress on NORD Website Federal budget cuts have been proposed to Medicare reimbursement for drugs and biologics as part of a compromise to raise the debt ceiling. One proposal under consideration is to move orphan products from Medicare Part B coverage to Part D. This could greatly increase the cost for some patients and families dependent on lifesaving orphan drugs and biologics. You can quickly and easily submit a message to President … [Read more...]

Courtney Reaches out to the Florida Keys!

  CONCH COLOR of the Florida Keys share this very important true story ...   Father turns anger over daughter’s death... into mission to educate others about PMLTodd 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 … [Read more...]

Courtney’s Dad ‘GETS MAIL’ , PML Strikes Again !!!

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...]

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

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...]

PML Strikes Again!!!!

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...]

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...]

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