Friday, May 11, 2007

This Is Vinny

Meet Vinny, he has Canavan Disease one of the most common cerebral degenerative diseases of infancy. His family is hosting a blog with several really cool items for auction, including books, fly fishing gear and hiking clothes. I believe the blog takes bids on the items for sale and takes donations of items to sell.

Paola Leone, Ph.D. and her team are the only researchers in the entire world working directly with Canavan children. Dr. Leone and her team have pioneered a brain gene therapy to halt the progression of the disease. Their research offers a glimpse at treating and eventually eradicating similar degenerative diseases of the brain, such as Parkinson's disease, Alzheimer's disease, Lou Gehrig's disease (ALS), and Multiple Sclerosis.
Dr. Leone and her team are currently at the University of Medicine and Dentistry of New Jersey, in Camden, New Jersey. The brain gene therapy is conducted at Cooper University Hospital. The procedure involves the insertion of six catheters into the brain that deliver a solution containing 600 billion to 900 billion engineered virus particles. The virus, a modified version of AAV, is designed to replace the aspartoacylase enzyme. Children treated with this procedure to date have shown marked improvements, including the growth of myelin with decreased levels of the n-acetyl-aspartate toxin. From Wikipedia
Remarkable resultswhich may help Parkinson's Disease, Cananvan Disease and Alzeimers?


robb davis said...


I am in the Wicked Cafe and I just found this card that said: 'come visit...'. So, I did.

I just started a blog a few months ago...still finding my voice (ie. what to write about/ post) with this whole blogging thing.

I plan to do some more work on it in the near future.

Anonymous said...

wow Candy, I had no idea this even existed. Thanks for bringing it to my attention. Also, read freakanomics - whoa is all i could say.

Candy Minx said...

Robb Davis,

Well knock me over with a sock! Thanks for stopping by and leaving a comment. do you know, I leave those little postcards all around for over a year...I've probably handed out about 600-1000 of them...and you are the first person that has ever come here and said they had found one of these cards. I am so pleased to meet you. Thanks for takignthe time to let me know about your blog, about the Wicked Cafe and that you had one of these postcards I hand made. Isn't blogging fun? I just write about whatever comes to my interest, I go all over the place. I wish you all the best in finding your voice.

My Reflecting Pool, hi, isn't that research and gene treatment fascinating? It seems to help a lot of children. One of the links I posted spoke of a child who was able to still ride their bike. My father died of ALS a couple of months my heart went out to these little kids: Right as they are growing stronger to learn how to play, their body is slipping away. It will also be interesting to see when this radical treatment will help Alzeimers or Parkinsons you know?

Tink said...

Please visit
Love, Tink

Salty said...

Hi Candy

Salty from the CM Board and a few other interweb places. I'm one of the guys who helped put this auction together.

First, thanks so much for posting on the auction, we truly appreciate the help for our friend's son.

If you have items to donate or want the paypal or address to mail a paper check to, please contact me at



Poor kid. Seems to be a knew illness every other day. Hope they can find a cure. I'll check out the blog

Gardenia said...

This is exciting! I have friends who are, and who have loved ones that are suffering Parkinson's and some of these diseases. It may not be timely enough for them, but again it might be.

If you run across anything new for Crohns, let me know - I keep my eyes on the genome project, hoping.......

Isn't this baby a sweetheart? I would never make a good peds nurse, I would stay in the broom closet crying.

Candy Minx said...

Tink, thank you so much. It means a lot to me that you, who I admire with your very cool posts about nature, women and spirituality would enjoy my blog so much. I'm just so flattered by your kind words.

Salty, hi, thaks for stopping by and Ietting me know a little more about the fundraising for the incredible work of Dr. Leone. I did e-mail some artwork to another fundraiser with photos...but I will contact you now. I am donating theree small paintings.

Four Dinners, I know isn't he a sweet looking child. From what I understand of the information about Dr.Leone's project, the kids so far may not be cured...but there are significant improvements in fighting th espeed of the disease and allowing kids more time to do more things kids love doing. I read somewhere that a child was able to learn to ride a bike after the treatment.

Gardenia, wouldn't this be amazing if the research played out into Alzeimer' and Parkingsons? So much of the stigma of getting older and fear of death is associated with diminshed capacities...anything that helps us improve our quality of life is a good thing. And to alleviate the fear associated with Alzeimers and aging. One of my best friends has Crohn's disease...but I don't know a lot about the disease except that there are corelations between immune system, difficulty absorbing nutrients, inflamation, and anemia. My experience with flax seed oil as an anti-inflamatory would want me to recomend flax seed oil...the problem is, that sometimes introducing oil into one's diet may produce digestion adjustments. Mybe ask your doctor if it's alright for you to start by taking a small dose of flax seed oil, like a teasoon for a week as an experiemnt. Then slowly building up the dose to one tablespoon over a period of a few weeks? Flax seed oil aids with digesting nutrients and is an anti-flamatory that aids with arthritis and the intestinal track on healthy people. I wouldn't want you to start taking it and then feel sick or have some "issues" iif you know what I mean...but I think it might be worth starting with a teaspoon. More on this when I write my review for The Shangri-La Diet...okay?

Gardenia said...

'k! I am on Omega 3 oils, and I will check out the flax oil. Maybe start with a wee bit and move up and check the tolerance. Thanks! (The gastro in Wyoming was very big on supplements & extra vitamins, etc.)

Candy Minx said... is one idea...yikes...

Amy Ruttan said...

I will check that out.

I almost lost my son Aidan (Sumo) when he was born due to Pediatric pulmonary hypertension and a small hole in his heart. Thankfully I gave birth in a hospital with an excellent critical care unit for children. He was totally cleared of his disease this past February so I can feel for his parents.