Friday, September 3, 2010

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Pepsi Refresh Links For Vote4Hope, Vote 4 Hope Rare Disease Campaign

If you are looking for information on the Pepsi Refresh Vote4Hope Rare Disease campaign... 

Gleevec Cancer Drug Reported To Work In Alzheimer’s disease also working in Niemann Pick Type C mouse

A New York Times story is reporting that Paul Greengard (and his dog Alpha), who... 

Why Vote4Hope? How Kickstarting Cures For Rare Disease Through The Pepsi Refresh Project Can Help Kids Why Vote4Hope? How Kickstarting Cures For Rare Disease Through The Pepsi Refresh Project Can Help Kids

A picture of Addi and Cassi's Supplements, Meds, Pill Crusher, & Syringes... 

Chronic Fatigue Virus Saga Continues – Murine Leukemia Virus or MLV Found by FDA and NIH Chronic Fatigue Virus Saga Continues – Murine Leukemia Virus or MLV Found by FDA and NIH

The chronic fatigue virus saga continues. Today, the NIH, FDA and CDC held a teleconference... 

Scientists at NIH, FDA & CDC To Hold Briefing On XMRV Retrovirus Scientists at NIH, FDA & CDC To Hold Briefing On XMRV Retrovirus

Note: I plan to begin posting blogs about the XMRV retrovirus on Addi and Cassi’s... 

Creating Hope Act 2010 Bill Would Extend Priority Review Voucher System To Rare Pediatric Diseases

Creating Hope Act 2010 Bill creates hope for treatments to ultra rare and fatal conditions... 

Alzheimer’s Patients Presenilin 1 Gene Defect Causes A Lysosomal Storage Disorder Alzheimer’s Patients Presenilin 1 Gene Defect Causes A Lysosomal Storage Disorder

A research paper by Dr. Ralph Nixon, director of the Center of Excellence on Brain... 

Orphan Drug Act – A Collosal Failure Considering Rare Disease Drug Statistics Orphan Drug Act – A Collosal Failure Considering Rare Disease Drug Statistics

For the past week, I have been obsessing over rare disease statistics ever since... 

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Cyclodextrin

IND Application Filed With FDA To Bring Cyclodextrin Into The Brain To Treat Fatal Childhood Cholesterol Disease IND Application Filed With FDA To Bring Cyclodextrin Into The Brain To Treat Fatal Childhood Cholesterol Disease

After months and months of work and input by doctors and researchers, Dr. Caroline... 

The Road to Building a New Orphan Drug – Am I Mad? The Road to Building a New Orphan Drug – Am I Mad?

On February 25-26, 2010, I will be attending the inaugural FDA Build-an-Orphan-Drug-Workshop... 

Family of Twins with Rare and Fatal Cholesterol Disease To Seek FDA Approval To Deliver Cyclodextrin Into the Brain Family of Twins with Rare and Fatal Cholesterol Disease To Seek FDA Approval To Deliver Cyclodextrin Into the Brain

The tagline of the new movie, Extraordinary Measures, about John Crowley’s fight... 

Instructions On How Cyclodextrin Solution Is Made For Addi and Cassi’s Intravenous Cyclodextrin Therapy Instructions On How Cyclodextrin Solution Is Made For Addi and Cassi’s Intravenous Cyclodextrin Therapy

A number of people from around the world who have children diagnosed with the fatal... 

Parents To Seek FDA Orphan Drug Designation For Cyclodextrin To Treat Rare and Fatal Cholesterol Disease Parents To Seek FDA Orphan Drug Designation For Cyclodextrin To Treat Rare and Fatal Cholesterol Disease

On Tuesday morning at 11am, Addi and Cassi are going to undergo volumetric CT scans... 

FDA Investigational New Drug Application Documents for Cyclodextrin Treatment for Niemann Pick Type C Disease FDA Investigational New Drug Application Documents for Cyclodextrin Treatment for Niemann Pick Type C Disease

Here you will find detailed documents outlining Addi and Cassi’s cyclodextrin... 

New non-drug fix for HIV? New non-drug fix for HIV?

The Scientist Magazine By Alison McCook June 2009 Researchers are slowly establishing... 

Wacker Chemie Expands US Based Cyclodextrin Facility – Sugar Compound Poses No Known Health Risks Wacker Chemie Expands US Based Cyclodextrin Facility – Sugar Compound Poses No Known Health Risks

Wacker Chemie, the Munich-based chemical company, announced that is has expanded... 

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Videos

Vote 4 Hope at Pepsi Refresh To Find Cures for Rare Skin Conditions like Epidermolysis Bullosa, Harlequin Ichthyosis, Xeroderma-Pigmentosum

During the Vote4Hope Pepsi Refresh Rare Disease Campaign, I am making video postings throughout September to raise awareness for all rare diseases, not simply the horrific disease called Niemann Pick Type C that my six year old identical twins suffer from. Today’s videos are some of the most heartwrenching videos I have ever watched. The videos... [Read more of this review]

Rare Disease Foundations Need To Vote 4 Hope In Pepsi Refresh Rare Disease Foundations Need To Vote 4 Hope In Pepsi Refresh

During the Vote4Hope Pepsi Refresh Rare Disease Campaign, I am making video postings on Addi and Cassi’s website to raise awareness for all rare diseases, not just the horrific disease called Niemann Pick Type C that I am fighting against on behalf of my six year old identical twins. Please take a minute to watch this compelling rare disease video... [Read more of this review]

University of Notre Dame Airs Video During Football Game Highlighting Rare Cholesterol Disease University of Notre Dame Airs Video During Football Game Highlighting Rare Cholesterol Disease

Thanks to the University of Notre Dame for highlighting the Parseghian Family’s fight against Niemann Pick Type C disease during the Notre Dame versus University of Nevada Reno football game.   They have a true commitment to helping fight not only Niemann Pick Type C but rare disease of all types. A number of people in the Reno area who are... [Read more of this review]

CNN Covers How California Health Care Budget Cuts Threaten Life of Little Girl Suffering From Deadly Cholesterol Disease CNN Covers How California Health Care Budget Cuts Threaten Life of Little Girl Suffering From Deadly Cholesterol Disease

Embedded video from CNN Video Here is a story on sweet little Jessica Leoni who suffers from the same disease as Addi and Cassi. Her health care is being threatened by California’s Health Care crisis. Here is the story from CNN. LOS ANGELES, California (CNN) — Anthony and Lisa Leoni have little time to worry about whether California’s... [Read more of this review]

What Dying Kids Can Teach Our Government About Health Care Reform What Dying Kids Can Teach Our Government About Health Care Reform

Addi & Cassi Story II from Addi & Cassi Hempel on Vimeo. Here is a video we put together for Oprah last year about the issues we are facing with health care and drug development system in the United States and what happens when your children are dying from a rare and fatal cholesterol disease like Niemann-Pick Type C (NPC). This video was... [Read more of this review]

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