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Daddy | The Addi and Cassi Fund - Niemann Pick Type C - Part 3

Monday, October 18, 2021

KTVU Reports On New Treatment for HIV/AIDS and Deadly Childhood Cholesterol Disease

April 5, 2009 by  
Filed under Videos

San Francisco Bay Area Television station KTVU Channel 2 tells the story about how HIV/AIDS and rare childhood cholesterol disease are connected and how a promising new treatment with a sugar compound called cyclodextrin could help both deadly diseases. Our thanks to KTVU for airing this 4 minute segment. (April 1st, 2009)

Cyclodextrin Sugar Killing HIV AIDS? Who Would Have Imagined This?

April 1, 2009 by  
Filed under Cyclodextrin

Rachel and Rosine - Africa Children With HIV AIDS

Millions of children in Africa like Rosine are needlessly contracting HIV/AIDS when an inexpensive and non toxic sugar compound called Cyclodextrin (or HPBCD) kills the HIV/AIDS virus and could literally stop the spread of this horrible deadly disease from mother to child (not to mention adults!).  Now that the world is going to find out how important the Niemann Pick Type C GENE and proteins (located on Chromosome 18) are to the HIV/AIDS viruses ability to create itself and replicate in an infected person’s body, there may be some significant breakthroughs on the horizon.

Rachel and Rosine – Africa Children With HIV/AIDS Rosine’s HIV/AIDS infection is being spread through her body with the helps of the Niemann Pick Type C proteins which help the HIV/AIDS virus makes itself inside a person’s cells.   Cyclodextrin sugar is having miraculous effect on the HIV/AIDS virus (it’s killing the virus in animals!).   Millions of children in Africa contract HIV/AIDS through the birth canal.   Imagine the possibilities of pregnant mothers in Africa having an inexpensive and safe cream applied inside the birth canal prior to giving birth?   The virus could be stopped – today!   Cyclodextrin is readily available and simply needs to be tested in humans and deployed to see if it can work as effectively on people as it does in animals.

Addi & Cassi Hempel – Twins with Niemann Pick Type C Cyclodextrin treatment is being tried as a potential therapy in Niemann Pick Type C DISEASE, which afflicts 5 year old identical twins, Addi and Cassi Hempel.  Addi and Cassi were born with two "genetic defects" or inherited "mutations" from their parents on the Niemann Pick Type C GENE.  These mutations on the GENE cause a fatal cholesterol metabolism DISEASE that is often referred to as "Childhood Alzheimer’s."   The FDA recently approved a "compassionate use" IND to allow the twins to receive cyclodextrin infusions directly into their bloodstreams.    With cyclodextrin having such a profound effect on cellular cholesterol in mice studies and on viruses like HIV/AIDS attach to cholesterol when they enter the body like HIV/AIDS, imagine what else it might do if more research was done on this compound?

Thanks to Kresta King Cutcher Venning for sharing her beautiful pictures of children in Africa who are suffering from HIV/AIDS.   This picture of Rosine was taken in 2006 and she is still battling her HIV/AIDS infection.   Together we must bring the story of children and families in different parts of the world who are fighting what seems to be entirely different fatal diseases, but are really connected through cholesterol, to the world!

Addi and Cassi Preparing For Intravenous Cyclodextrin Treatment

March 22, 2009 by  
Filed under Cyclodextrin

Cholesterol and Kids - Addi and Cassi Fight Neimann Pick Type C

With the FDA approval now in hand and mediports installed, we are working towards starting intravenous infusions of Hydroxy Propel Beta Cyclodextrin on Addi and Cassi.  We are currently capturing a full set of baseline testing on the twins (blood, urine and stool samples) for our doctors and researchers to study. Intravenous cyclodextrin treatments have never been attempted before to remove cholesterol from the cells and organs of living people, we have had to set up an entirely new testing and safety protocol from scratch.  This has taken months of work. Since Cyclodextrin is not a drug, is non-toxic and is already going into the human body through a drug called Sporanox, we were able to make the argument with the FDA to allow us to treat Addi and Cassi under "compassionate use."  Essentially, we have created our own personal clinical trial with our identical twins in order to try this sugar compound to see if it can extend or save their lives. 

Addi and Cassi recently underwent neuropsychological exams by Dr. Seth Ubody at Children’s Hospital Oakland to capture neurological baselines.  We will also be doing spleen and liver measurements and a whole host of other tests prior to starting the cyclodextrin infusions.  Once we have all the baselines in place, the infusions will begin.  Baseline samples can then be compared to samples collected following cyclodextrin treatment to see if there are any measurable changes. The current plan is to admit Addi and Cassi to Renown Regional Medical Center where the girls will undergo 24 hour continuous infusions of cyclodextrin for 4 straight days (Note: If anyone reading this blog has extra children’s videos they don’t need, please send them to us!)  After receiving 4 days of continuous infusions of cyclodextrin, the girls will become out patients and receive infusions 1x per week for 8 hours.

We plan to carve out Friday’s for these infusions and we’ll be spending a lot of time at the hospital. Our goal is to eventually administer cyclodextrin infusions at home with the help of a home health nurse.Right now, we have no idea what dose of cyclodextrin might have a therapeutic effect or if it will move cholesterol out of Addi and Cassi cells and bodies like it does in Niemann Pick Type C mice. We must start at a low level for safety purposes and then begin to scale up cyclodextrin doses.  After 3 months, we plan to go back to the FDA and ask them to allow us to give Addi and Cassi slightly different doses of cyclodextrin so we can accelerate finding the ideal therapeutic dose. Since the girls are identical twins, they can work together to find the perfect dose.

 

CBS Evening News Covers Dillon Papier’s and His Army’s Fight To Save His Life

March 4, 2009 by  
Filed under Videos

Addi & Cassi Appear On November Cover of “The Scientist”

October 30, 2008 by  
Filed under Addi and Cassi News

 twin-disorders

Our sincere thanks to Alison McCook along with the editors, designers and publisher of The Scientist for this incredibly well written story that takes an in-depth look at Niemann Pick Type C disease and explores the possibility that NPC research could provide insights into the mechanisms and potential therapies for Alzheimer’s disease.  You can read the entire story on The Scientist website (free registration). To download a PDF version of the November 2008 issue of The Scientist article, choose one of the following links:

 

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