Courtney’s Story

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

January 20, 2013 by Team Celebration 3 Comments

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...]

Filed Under: Contributors, Courtney's Story, FEATURED, INSPIRATIONAL BOOKS

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

July 20, 2012 by Team Celebration Leave a Comment

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...]

Filed Under: AIDS - H.I.V., AMERICAN [U.S.A.], CAUSES, Courtney's Story, MEN "Positive Action" Tagged With: A Celebration of Women, AIDS, awareness, books, brain, brain diseases, creating awareness, cure, Death, Fabian Morales, find a cure, HIV, medical care, PML., The Courtney Project.org is Taking Action, The Courtney Story, Todd Hewitt, Todd Reginald Hewitt, viral disease, women.

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

March 3, 2012 by admin 10 Comments

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...]

Filed Under: Courtney's Story, MEN "Positive Action", WOMEN Taking ACTION Tagged With: A Celebration of Women, affects the central nervous system, AIDS, and people that have certain cancers, blurred vision, brain, Chickenpox, compromised Immune System, confusion, Courtney Leith Hewitt, Courtney's Story - What is PML?, disorientation, fatigue, HIV, impairment of learned skills, loss of balance, lymphoma, organ transplant patients, PML., Reginald Todd Hewitt, sarcoidosis, seizures, such as Hodgkin's disease, Take Action, Todd Hewitt, weakness on one side, women taking action

HRSA Announces $70M Grant Competition for HIV/AIDS Services for Women, Infants, Children and Youth

January 26, 2012 by Team Celebration Leave a Comment

HRSA Announces $70M Grant Competition for HIV/AIDS Services for Women, Infants, Children and Youth Last week, the HIV/AIDS Bureau (HAB) of the Health Resources and Services Administration (HRSA) issued a Funding Opportunity Announcement (FOA) for the Ryan White HIV/AIDS Program Part D Grants for Coordinated HIV Services and Access to Research for Women, Infants, Children, and Youth (WICY). According to HRSA the entire $70 million Part D program is being re-competed through this FOA in … [Read more...]

Filed Under: AIDS - H.I.V., AMERICAN [U.S.A.], CAUSES, Courtney's Story, Government Speaks to our Women, WOMEN & SELF CARE, YOUTH of ACTION™ Tagged With: A Celebration of Women, AIDS, children, Children and Youth, dental, Grant Competition, HIV, HIV/AIDS Services for Women, HRSA, HRSA Announces $70M Grant Competition, infants, neurology, nutrition, OBGYN, support services, Transmission of HIV, women with AIDS, women with HIV

NORD Foundation ~ October 2011

October 26, 2011 by Team Celebration Leave a Comment

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...]

Filed Under: Courtney's Story, WOMEN & SELF CARE Tagged With: A Celebration of Women, Courtney's project, Infectious Diseases, NORD Foundation ~ October 2011, PML., Rare Diseases, raredisease.org, research, Todd Hewitt, viral diseases, women taking action

WOMAN of ACTION™ – Courtney Leigh Hewitt

September 19, 2011 by admin 39 Comments

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...]

Filed Under: Courtney's Story, WOMEN of ACTION™ Tagged With: AIDS, Courtney Leigh Hewitt, Courtney's Story of PML, cure, disease, Florida, HIV, Mickey, Mickey Mouse Club, Mouseketeer, New York, NORD, PML Courtney's Story, PML., Private Investigator, rare disease, Tony Lucca, U.S.A., Walt Disney

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

August 11, 2011 by Team Celebration Leave a Comment

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...]

Filed Under: Courtney's Story, WOMEN & SELF CARE Tagged With: (NIH)., A Celebration of Women, Amicus Therapeutics, Audrey Ashley at NORD, Bausch and Lomb, Center for Devices and Radiological Health, Center for Drug Evaluation and Research, Chairman and CEO, Chairman of the Board, Courtney's Story, director, Engelberg Center for Health Care Reform, Executive Director, FasterCures, FDA, Frank J. Sasinowski, Fred Hassan, Hyman, Inc., Janet Woodcock, JD, Jeffrey Shuren, John F. Crowley, Kelly C. Slone, limited scholarship, Margaret Anderson, Mark B. McClellan, MBA, MD, Medical Industry Group, MPH, National Organization for Rare Disorders, National Venture Capital Association, NIH Director Francis S. Collins, NORD, partner, patient organizations, Phd., Phelps & McNamara, Rare Diseases, senior vice president, Shannon Lewis at DIA, Shire Human Genetic Therapies, Stellar Lineup of Speakers, Suzanne L. Bruhn, Take Action, The Brookings Institution, The Courtney Project, Warburg Pincus, women taking action, Women's Health

NORD e-News: July 2011 Edition

July 26, 2011 by admin Leave a Comment

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...]

Filed Under: Courtney's Story Tagged With: (ABTA), (AMDA), (NIH)., A Celebration of Women, Acid Maltase Deficiency Association, American Brain Tumor Association, benefit-risk analysis, Congress to Fund NCATS, Diane Dorman of NORD, Duke University, EURORDIS, FDA, FDA Office of Orphan Products, Illinois, innovation, Janet Woodcock, July 2011 Edition, Lincolnshire, MD, Medicare, MPH, NORD, NORD e-News, orphan drugs and biologics, Take Action, Timothy R. Coté, women taking action, women.

Courtney Reaches out to the Florida Keys!

July 20, 2011 by admin Leave a Comment

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...]

Filed Under: AMERICAN [U.S.A.], Courtney's Story, WORLD EVENTS Tagged With: A Celebration of Women, central nervous system, chronic corticosteroid therapy, Courtney Leigh Hewitt, Courtney Reaches out to the Florida Keys!, Hodgkin’s disease, immune-compromised individuals, immunosuppressive therapy, individuals with cancer, lymphoma, National Institutes of Health, PML., Progressive Multifocal Leukoencephalopathy, sarcoidosis, viral disease, Woman of Action, women taking action, women., ‘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...]