This is huge because testing for Lysosomal Storage Disease’s (Niemann-Pick A,B, & C,Krabbe, Pompe, Gaucher, and Fabry) can help immensely for families and eliminate some struggles with “What is wrong with my child!”.  Even though many don’t have a effective treatment or cure, sometimes early intervention in the future could lead to drastic improvements in a child’s life if diagnosed.  What if knowing at birth something simple could be done to help them live a normal life and drastically give them a longer life until a treatment or cure comes about????

Please visit the article here: Mo. Votes to Add 5 Diseases to Newborn Screenings

Learn about Niemann-Pick Type C


Message from one of the Mother’s who have twin girls with Niemann Pick Type C.  Please help by voting!  Thank you!

Dear Friends:

We have a very big meeting with Babies R Us next week in New Jersey to see if they will carry the BellyLaf product line.   This is our second meeting.   10% of BellyLaf’s profits go into research into Rare Diseases. Please help us out and vote “Use It” for our product on the Parenting Magazine Poll.

We have a competitor who keeps voting no for our product which can hurt our chances of getting picked up.

Please go to the following poll:  http://www.parenting.com/Common/commonPoll.jsp?id=293.

Vote USE IT!

Thanks so much for your help!  We’ll let you know if we get picked up.



Learn about Niemann-Pick Type C

Frank Cazella & Andrew Misak are owners of Pieroguys Pierogies, LLC.  They helped sponsor one of events in Orlando, FL back in March 2009 for the Niemann-Pick Children’s Fund, Inc.  They make some killer food.  Check out what they are all about!  I am hungry just thinking about them!

What are Pierogies?

A Pierogi is a type of boiled dumpling made
from unleavened dough and stuffed with various ingredients. Pierogi are usually small enough to
be served several at a time. Though this
food has strong ties to Slavic culture, similar foods
occur in many cultures across Europe and Asia.

The outside of a pierogi is a type of dough mixed
from flour, warm water, and beaten egg.

The inside filling is prepared many different
ways depending on your taste. They can be stuffed
with sauerkraut, cheese, mashed potatoes, cabbage,
onion, various types of meat, vegetables or fruit.

Then the ends of each pierogi are pinched and
together the batch is put into a boiling pot of water,
fried in butter, or baked in the oven with other garnish.

Pieroguy Pierogies, LLC

Pieroguy Pierogies, LLC

Learn more about Pierogies here

Pieroguy Pierogies, LLC


Learn about Niemann-Pick Type C

We wanted to say thank you to Market Leverage!

Thank You Newsletter

The winning Team!!!!  To view all the Thank You’s for this event, please visit: BriParDun


Tim Jones is a great guy who was one of many that participated in the Bowl-A-Thon!  You can visit his website to learn more about who he is and what he does for the online community:  The Real Tim Jones

This is from his blog:

On Tuesday, I was down in Orlando to captain the Affiliate Summit bowling team for Market Leverage’s Bowl-A-Thon to raise money for the Niemann-Pick Children’s Fund.  One of Market Leverage’s publishers has two children with this rare, terminal illness.  The drugs to help with the effects of the disease are currently very expensive and the Fund aims to offset many of the medical costs associated with Nieman Pick and fund research for a cure.

The Affiliate Summit team came in second place among five teams and took home a small trophy.  We also had the second highest score from our teamate, Richard, from Market Leverage, who scored a 169.  I personally scored a 108 in the first round and a 113 in the second round.

First, take a look at some pictures from the event and then I’ve included a video to watch.


@Missy Ward and I


Ben Spark and IZEA’s Door Prizes


Round 1 Final Scores for Team Affiliate Summit

This is a news story that me and Jennifer have anticipated hitting the media. We are waiting for the Wall Street Journal to publish a story relating to this.

This seems very exciting and might provide as a manageable treatment for Brisan and Parker. The Hempel family are good people and are blessed to be able to use their talents and resources to make this a possibility.

It is amazing how something that we eat, drink, and use are in very common products like toot paste, butter, and etc yet it has taken this long to get to this point?

At Children’s Hospital in Oakland, researchers searching for the cure to a rare disease afflicting a pair of twin girls have discovered a startling ray of hope that may lead to a breakthrough treatment for AIDS.

Five-year-old Addison Hempel and her twin sister Cassidy are both stricken with Niemann Pick Type C Disorder, a rare and deadly disease that disrupts the metabolization of cholesterol.The brain cells die because of it. They can’t process cholesterol, explained the twin girls’ mother Chris Hempel. They end up in wheelchairs. They can’t swallow. It’s fatal and there’s no treatment.The first symptom was a swelling of their spleens. It was a cancer specialist who first noticed signs of Niemann Pick Disorder.

The girls also started having symptoms of weakness and clumsiness similar to very early onset Alzheimers’. Niemann Pick is often referred to as “childhood Alzheimer’s” because of these similarities.The lack of available treatment for the disease led the Hempels to search for a cure on their own. They went on the Internet and found a study that said it cured mice that were genetically modified to have Niemann Pick Disorder.

The treatment was a simple inexpensive sugary compound made from starch called Cyclodextrin.The Hempel family took that research to their Doctor Caroline Hastings of Children’s Hospital in Oakland. With the twins’ condition rapidly getting worse, the Hempels knew there was no time to lose.”We wanted to take the risk now, because our kids are deteriorating,” said Chris Hempel. “We don’t know what will happen. But I know it’s not going to hurt them, and we know in our mice that have the disease, it provides a big benefit. So why not?”

After receiving a special FDA exemption, Addi and Cassie are set to become the first humans to take Cyclodextrin therapeutically. Surgeons recently implanted intravenous infusion devices under the skin of each girl.

The hope for an even bigger benefit from Cyclodextrin treatment brought Nashville Doctor James Hildreth to Oakland. He studies HIV/AIDS. The connection between the two diseases?”We made the discovery that cholesterol is required for HIV to be infectious,” explained Dr.HildrethThe same compound that will hopefully drain cholesterol from the children’s brain cells – Dr. Hildreth has discovered – also drains cholesterol from the AIDS virus, killing it.Collaborating with the Hempels, Dr. Hildreth is now working on an AIDS prevention based on Cyclodextrin.”What’s really, really remarkable and got me so excited is here’s a substance that’s used by humans,” said Dr. Hildreth. “Millions are exposed to it every day. It’s exceedingly safe, but it can kill HIV. What more can you ask?”The one-of-a-kind cholesterol trial for the twins will commence with a very low dose that doctors hope to increase steadily.”What we don’t know about the drug is if it works,” said Dr. Hastings. “How much do we give and how frequently? We’re just starting with the protocol.”The twins will get intravenous Cyclodextrin every week or so. Ultimately, doctors hope to develop a sort of portable pump that can deliver it directly, twenty four hours a day.The twins’ are thrilled that the treatment might give their girls a fighting chance at surviving their battle with Niemann Pick Disorder.”I feel such a relief to even have something to try that’s even a glimmer of hope,” said Chris Hempel.

The AIDS preventive, instead of being intravenous, could be a cream as cheap as ten cents a dose, that people worldwide could use.”We hope to be doing trials in humans very soon,” said Dr. Hildreth.Doctors say this collaboration could be a remarkable example of how smart use of basic research can save lives.

This is a follow up on the post earlier about Cyclodextrin.  Addi & Cassi are twin girls that live in Reno, NV and their parents Chris & Hugh Hempel are great people doing a lot of great things with the abilities they have been given.

The research is early and the talented people working on this don’t exactly know how it is working or how it might ultimately turn out in children with NPC but it is a good risk to take from their perspective.

The girls will have mediports installed so they can inject Cyclodextrin right into their bloodstreams.  Of course they will be heavily monitored for any progress or digression.  This is great news.  Our prayers and wishes are with them.

Here is the blog post on Addi & Cassi website:

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