Tuesday, May 30, 2017

Rare Disease Day 2012 – Spread This Call To Action To Make A Difference!

January 15, 2012 by  
Filed under Featured Stories

World Rare Disease Day 2012 is coming up on February 29th.  Consider these staggering statistics. Each year, 139 BILLION U.S. dollars are invested in medical research — much of it from tax payers Each year, 800,000 papers are published in medical journals by scientists Each year on average, ONLY 21 new drugs are approved by [...]

Share this:
  • Print
  • Digg
  • del.icio.us
  • Facebook
  • Google Bookmarks
  • Diigo
  • email
  • PDF
  • Twitter
  • Yahoo! Bookmarks

Meet The Children Who Are Resistant To Contracting Ebola, HIV-AIDS

December 27, 2011 by  
Filed under Featured Stories

My life grows more surreal by the day. Four years ago, I was told that my eight year old identical twins have a fatal genetic cholesterol disease called Niemann Pick Type C (the “Childhood Alzheimer’s”) and they would likely not live to see their 10th birthday. Now I have learned from top virus scientists that [...]

Share this:
  • Print
  • Digg
  • del.icio.us
  • Facebook
  • Google Bookmarks
  • Diigo
  • email
  • PDF
  • Twitter
  • Yahoo! Bookmarks

National Institues of Health Announces Cyclodextrin Clincial Trial For Fatal Cholesterol Disease Called Niemann Pick Type C

August 16, 2011 by  
Filed under Featured Stories

Over the past three years, many Niemann Pick Type C families as well as physicians treating NPC patients worldwide have contacted Dr. Caroline Hastings and I regarding Addi and Cassi’s treatments with hydroxypropyl-beta-cyclodextrin. Since sharing our intravenous (IV) and intrathecal (IT) cyclodextrin treatment protocols with NPC families and doctors in the U.S. and other countries, [...]

Share this:
  • Print
  • Digg
  • del.icio.us
  • Facebook
  • Google Bookmarks
  • Diigo
  • email
  • PDF
  • Twitter
  • Yahoo! Bookmarks

CureCaps Hat Project Makes First Medical Research Grants To Leading Alzheimer’s and Athersclerosis Researchers

July 25, 2011 by  
Filed under Featured Stories

Soon after Addi and Cassi were diagnosed with a fatal genetic cholesterol disease called Niemann Pick Type C disease, we organized a grassroots effort to collect “CureCaps” from volunteers around the world and sell them to help raise money for research into brain diseases that impact millions of people worldwide. We want to report to [...]

Share this:
  • Print
  • Digg
  • del.icio.us
  • Facebook
  • Google Bookmarks
  • Diigo
  • email
  • PDF
  • Twitter
  • Yahoo! Bookmarks

Cholesterol and Autism – Can Eggs In The Diet Save the Autistic Brain? Will SLOS Provide Clues To Autism?

April 2, 2011 by  
Filed under Featured Stories

Will it be the Mom’s and Dad’s with children with autism who will finally help educate the public on how serious cholesterol is when it comes to brain function in children? This week researchers at The Ohio State University Medical Center announced they are studying whether a simple nutritional intervention – adding cholesterol to the [...]

Share this:
  • Print
  • Digg
  • del.icio.us
  • Facebook
  • Google Bookmarks
  • Diigo
  • email
  • PDF
  • Twitter
  • Yahoo! Bookmarks