Sunday, November 19, 2017

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

July 25, 2011 by  
Filed under Featured Stories

Maike and Shelly of Johnson & Johnson sell hats to raise money for CureCaps project

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 our CureCaps supporters that we have made our first medical research grants of $15,000 to two world-renowned Swedish researchers, who are working in collaboration to study neurodegenerative disorders like Niemann Pick Type C.

CureCaps Research Award Recipient #1:  Dr. Kaj Blennow, University of Gothenburg, Gothenburg, Sweden

The first researcher to receive a CureCaps grant of $7,500 is Dr. Kaj Blennow, University of Gothenburg, Gothenburg, Sweden. Dr. Blennow is one of the leading Alzheimer’s researchers in the world who has spent years working to find biomarkers for Alzheimer’s disease and other neurodegenerative diseases.  Currently, there are no blood or routine clinical tests (“biomarkers”) to detect if someone has Alzheimer’s, Niemann Pick Type C disease, etc.  You can’t treat a disease if you have no way to detect it or track it over time. Dr. Blennow is developing reliable tools for diagnosis, prognosis and monitoring of therapy through the analysis of cerebrospinal fluid (CSF) biomarkers such as A-Beta and Tau.

  • “In the field of brain disorders, the development of good biomarkers can enhance the possibilities for early diagnostics and the measurement of treatment effects. In the future, this could enable clinicians to diagnose and treat Alzheimer’s disease before the person experiences any symptoms” – Dr. Kaj Blennow

Dr. Blennow and his team have taken CSF samples from Addi and Cassi and other children afflicted with Niemann Pick Type C and analyzed them for ‘biomarker signatures’ including Tau and A-Beta levels.  What they discovered in Niemann Pick Type C children is that amyloid metabolism is highly disturbed just like in Alzheimer’s disease, creating an even stronger correlation between the two neurological diseases.  Dr. Blennow and his team are looking for further correlations between the two neurological diseases and are exploring how a compound called cyclodextrin (we are treating the twins with this!) may alter amyloid metabolism.

CureCaps Research Award Recipient #2:  Dr. Ingemar Bjorkhem, Professor emeritus of Biochemical Arteriosclerosis, Karolinska Institute, Stockholm, Sweden

The second researcher to receive a grant of $7,500 is Dr. Ingemar Bjorkhem, Professor emeritus of Biochemical Arteriosclerosis, at the Karolinska Institute.  The Karolinska Institute is a medical university located in Stockholm, Sweden, and is one of Europe’s largest medical universities. It is well known because the Institute appoints the laureates for the Nobel Prize in Physiology or Medicine.

Dr. Bjorkhem studies cholesterol homeostasis in the human body.  Most people do not know this, but approximately 25% of the total amount of the cholesterol present in humans is localized to brain, most of it present in myelin. Cholesterol levels and cholesterol turnover are affected in many neurodegenerating disorders, and the capacity for cholesterol transport and recycling in the brain seems to be of importance for the development of these neurodegenerative diseases such as Niemann Pick Type C.

Dr. Bjorkhem is well known for his groundbreaking work on oxysterols, which are oxidized derivatives of cholesterol. Oxysterols are important in many biological processes, including cholesterol homeostasis, sphingolipid metabolism, platelet aggregation and apoptosis. Dr. Bjorkhem believes he has found a new type of oxysterol circulating in Addi and Cassi bloodstream.  This oxysterol is potentially related to iron metabolism so he currently looking into oxysterols in patients with other disturbances in iron metabolism (hemochromatosis).  Addi and Cassi’s may be getting iron overload and this may be a key clue not only for NPC disease, but other neurodegenerative diseases as well.

“Oxysterols are oxidized metabolites of cholesterol. These steroids are formed both enzymatically and non-enzymatically in all cells and have been ascribed a number of regulatory effects. They have been suggested to play a role in connection with atherosclerosis and neurological diseases. During the last three decades our laboratory has been involved in research on the role of the oxysterols in connection with the above diseases and we have developed a number of sensitive and accurate methods for identification and quantification of oxysterols.

Thank you to all volunteers who make and sell these hats.  While these are small grants, they are making a big impact and there is a huge return on investment.

We are making a difference not only in the lives of kids like Addi and Cassi, but millions of others too!  Winter is coming and we’re hoping to sell a lot more of the hats we have in stock!  Please keep them coming!

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Procter & Gamble’s Febreze Product May Contain Active Drug Compound That Can Enter Human Cell

July 19, 2011 by  
Filed under Featured Stories

Something does not smell right over at Procter & Gamble. For more than a year, I have been trying to reach the proper people at the company  (ie. Sr. Execs) in order to get them to pay attention to the fact that one of their key products has a potential drug in it that millions of people are inhaling.

The potential drug is called hydroxy propyl beta cyclodextrin (HPBCD) and this compound is used in many of Procter & Gamble household products, including their Febreze air freshener.  You can read about how P&G uses HPBCD in Febreze on their website.  HPBCD is the active ingredient which helps Febreze do its odor reduction magic!

What the top people at P&G may or may not know is that it has recently been discovered that cyclodextrins have an affinity for cholesterol, especially forms of HPBCD.  For decades, HPBCD was thought to be an inactive and non toxic ingredient but in fact HPBCD may act as very powerful drug in the human body.  When cyclodextrin enters into the body, researchers believe it has the ability to penetrate into the lysosome of a human cell and interact with cholesterol and potentially other things as well.

I am currently trying to save my twins’ lives with HPBCD as they are afflicted with one of the worst cholesterol diseases on the planet — it’s called Niemann Pick Type C and the condition is often referred to as “childhood Alzheimer’s.”  I have been working on trying to figure out how make an HPBCD aerosol that the twins can breath in — essentially a Febreze without all the scents.  While we currently have FDA approval to give Addi and Cassi intravenous and intrathecal treatments of HPBCD, the compound does not appear to penetrate the lung through these routes of administration.  So I need to look into making an aerosol to reach the lung.

I contacted Procter & Gamble when I learned about HPBCD being in their product line.  I was hoping they could help me with some data on HPBCD, but more importantly, I wanted to alert them of the fact that HPBCD is a potential active drug and I believed further studies on HPBCD needed to be carried out.

What really stinks is that Procter and Gamble ignores me regarding this issue with HPBCD being a potentially active drug  — it’s truly an unbelievable situation.  The product manager I was routed to last year who is apparently responsible for the Febreze product line does not respond to me nor do their top PR people who I have contacted numerous times.  Maybe the lawyers are involved at this point?  I don’t know ….. but something about them ignoring me stinks to high heaven.  The whole nightmare with them completley blowing me off for months has sent me completley over the edge.

Two weeks ago, I forwarded them patent information on HPBCD as a new therapy to threat asthma and COPD — essentially researchers are looking to create an HPBCD that can be inhaled through the nose and mouth to treat these lung conditions  — just what I am looking for!   No response.

I do not think HPBCD is harmful.  It’s a non toxic sugar compound and it has a great safety profile.  Obviously, we are putting the compound into my twins’ brains to try and save their lives and it could be used to treat lung diseases.  But given that HPBCD is a potential active drug, is seems like a fair request to ask Procter & Gamble to take what I am saying seriously given millions of people are inhaling Febreze (even if it is in very small amounts or it’s a small exposure).

If Febreze is going through your nose, it’s potentially getting into your bloodstream and could even cross the blood-brain barrier through the nasal passage.  People have a right to know that they could be breathing in a drug that could interact with their cholesterol, even if it is completely safe.  Surely more studies need to be conducted now that we have new information that cyclodextrin is a potential active pharmaceutical ingredient (API).

I contacted the FDA about this issue since HPBCD is a potential drug but I was told by FDA that this is an issue for the Consumer Products Safety Commission (CPSC).  I am planning on contacting Inez Tenenbaum who is the Chairman of the Commission because it’s not right that a company like P&G can simply ignore something like this.  Certainly a company should report whether they have been notified that their product’s main ingredient is a potential drug that could get into a person’s cells.

What is the public’s right to know in a situation like this?  I don’t know the answer but I am going to sniff it out.






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Mother of All Lies – Casey Anthony. RIP Caylee. We won’t forget you, Little Sweetheart.

July 5, 2011 by  
Filed under Featured Content

Note: I normally don’t post anything on Addi and Cassi’s website that is not about their disease or something that is medical related. Hugh would say to leave it to Facebook or Tweet about it.

But the case with Casey Anthony and her little daughter Caylee has captured my attention….and my heart.

When you’re in so much pain about losing your own kids to a terrible disease, you can’t imagine a mother suffocating an innocent child and discarding her in a swamp to be eaten by animals.

Peter Gelzinis of the Boston Herald said it all for me!  His commentary is below.

Jury swayed by
mother of all lies

The O.J. Simpson case introduced us to the idea of jury nullification, but it took a 25-year-old bar-hopping party girl, bored by motherhood, to refine the concept.

Yesterday, a Florida jury acquitted Casey Anthony on all three counts of murdering her 2-year-old daughter, Caylee.

Then, this very same jury went on to return four guilty counts of lying to police about . . . that’s right, the murder of her daughter.

Shame on this jury for denying the obvious.

If the O.J. debacle proved anything, it was that the chances of killing your wife and beating the rap are better in California.

Likewise, what we take away from this sad, slimy soap opera in the Sunshine State is that a bimbo looking to detach herself from the burdens of her 2-year-old daughter has a good chance of getting away with murder in Florida.

All you needed to know about the absurdity of yesterday’s verdict was uttered by Casey’s victorious defense lawyer, Jose Baez, who reminded the public that he had never denied his client was a liar.

Quite a victory declaration.

Ah, but then what else could this lawyer say? Even though Casey Anthony was the last person to see her daughter alive, she spent a month denying Caylee’s disappearance to everyone, including her own parents.

Even when the trunk of her car reeked with the stench of death left by a decomposing body, Casey kept lying. She couldn’t even bring herself to conduct a sincere vigil. While the cops searched by day, Casey was hitting the bar scene at night.

But as this trial unfolded, it was clear that such damning “circumstantial evidence” was dwarfed by the suntanned dysfunction of a family who were all more than somewhat wacky.

O.J. was helped tremendously by the behavior of a white LAPD detective branded a racist.

To plug the huge holes in Casey Anthony’s story, she and her lawyers put her father on trial. All of this woman’s malignant deficiencies and narcissism could be explained by the alleged molestation she suffered at the hands of her father, a former homicide detective.

Casey’s lawyers tried to pin Caylee’s death on Dad, suggesting he was the one who put the duct tape over her mouth after she drowned in the family’s pool.

Apparently, that seemed to qualify as reasonable doubt in this jury’s collective consciousness.

And yet they weren’t troubled by a young mother who gets the two-word credo “belle vita,” or beautiful life, tattooed on her body while her dead child is rotting away in the woods.

The old saying is that it only takes one to hang a jury. (You just know Sal DiMasi was on his knees lighting vigil candles for that one dissenting juror.)

It takes 12 knuckleheads to nullify a jury. And yesterday, those 12 people managed to say that, yes, Casey Anthony lied about what happened to her child. But no, she had nothing to do with Caylee’s horrible death.

It’s a verdict that simply does not make any sense. It’s a verdict that is, in itself, a lie.

Perhaps the only sorry truth to emerge from this hellacious modern-family fable is that Caylee Anthony was probably doomed by the accident of her birth into such a heinous household … and then further betrayed by 12 strangers who were unable to see the truth before their eyes.

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