A Worthwhile Cause

CLICK HERE to read up on and donate to a very worthwhile cause.

"MPS VI, also known as mucopolysaccharidosis VI or Maroteaux-Lamy syndrome, belongs to a group of rare inherited diseases called lysosomal storage disorders."

Posted: Jul 14, 2008 at 10:57 am / Email this »

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50 comments to “A Worthwhile Cause”

lynn says – reply to this

1

first
marke says – reply to this

2

NOW we know what's wrong with you, Perez. Put your chubby little hand in your pocket and give them some of your ill-gained money……you sloth.
james says – reply to this

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if i had the money, i'd help these people out. what a harrowing story, but what an adorable child. bless them.
Sophi says – reply to this

4

I love to see you promoting these sorts of foundations…. you obviously took this after seeing it on John Mayer's blog, though– so he deserves credit for helping publicize this as well. But kudos, Perez. Definitely a worthwhile foundation.
k says – reply to this

5

I love to see you promoting these sorts of foundations…. you obviously took this after seeing it on John Mayer's blog, though– so he deserves credit for helping publicize this as well. But kudos, Perez. Definitely a worthwhile foundation.

I definitely agree with this
Junio says – reply to this

6

Is that Aaden Gosselin?
Saman says – reply to this

7

Yeah this was def taken from JM's blog but that's alright at least it's getting some publicity. Giving John credit would be nice though…no hard feelings right?
Melle says – reply to this

8

Give John Mayer some positive credit for this one Perez.
Cut the bullshit about making out with him and give him the credit he deserves.
Porn_Mobile_Man says – reply to this

9

Hey everybody it's me! I'm just cruisin in my "Porn display on wheels", my good ol '89 lincoln full of nasty shit! It has everything a sexual deviant could ever ask for - porn dvds & mags, the naked barbie, explicit music, dildos and what not! I'm hungry - let's see whats on the menu - Oh, it's "Panties on a platter"! Yumm… I'm also wearin lip gloss. Oh, also, i will soon set off my "Porn Mobile Tour 2008 - Porn on wheels" - coming to a city near you, bitches ! To the porn mobile!!!!
sarah says – reply to this

10

i read about this on john mayers blog, i will defiantly donate what i can this kid pulls at my heart strings
Dr. says – reply to this

11

WHILE YOU'RE AT IT PEREZ, CHECK OUT WILLIAMS SYNDROME. THIS IS THE RARE GENETIC DISORDER THAT TINA CHEN SUFFERS FROM. BUT FOR SOME REASON YOU LOVE TO RIDICULE HER. I GUESS SHE DOESN'T SUFFER FROM THE CORRECT CHROMOSONAL DEFECT TO GARNER YOUR COMPASSION.
Williams Syndrome is characterized by a distinctive, "elfin" facial appearance, along with a low nasal bridge; an unusually cheerful demeanor and ease with strangers, coupled with unpredictably occurring negative outbursts; mental retardation coupled with unusual (for persons who are diagnosed as mentally retarded) language skills; a love for music; and cardiovascular problems, such as supravalvular aortic stenosis and transient hypercalcaemia.
Dr. says – reply to this

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TINA CHEN WAS BORN WITH WILLIAMS SYNDROME!
Williams syndrome is caused by the deletion of genetic material from the region q11.23 of chromosome 7. The deleted region includes more than 20 genes, and researchers believe that the loss of several of these genes probably contributes to the characteristic features of this disorder. CLIP2, ELN, GTF2I, GTF2IRD1, and LIMK1 are among the genes that are typically deleted in people with Williams syndrome. Researchers have found that loss of the ELN gene, which codes for the protein elastin, is associated with the connective-tissue abnormalities and cardiovascular disease (specifically supravalvular aortic stenosis (SVAS) and supravalvular pulmonary stenosis (SVPS)) found in many people with this syndrome. Studies suggest that deletion of LIMK1, GTF2I, GTF2IRD1, and perhaps other genes may help explain the characteristic difficulties with visual–spatial tasks. Additionally, there is evidence that the loss of several of these genes, including CLIP2, may contribute to the unique behavioral characteristics, learning disabilities, and other cognitive difficulties seen in Williams syndrome.
YOU ARE A BULLY AND MUST HAVE SUFFERED ON THE PLAYGROUND AS A CHILD. YOU NOW HAVE TURNED INTO YOUR TORMENTORS. THIS WOULD EXPLAIN WHY YOU CONTINUE TO BEAT UP ON TINA CHEN.
Amy C says – reply to this

13

lol perez is OBSESSED with john mayers blog.
Of course its for a good cause.
I saw this little boy when I was at the JM concert at the Molson Ampitheatre in Toronto. He was really cute, and i'll admit i was uber jealous that he was going to meet JM.
Kriss says – reply to this

14

This is so sweet of you to do, Perez. (:
Jenny says – reply to this

15

HOW AMAZING! Our son Holden, has MPS VI. He is three years old and Isaac is the first family we met when he was diagnosised. Go to www.holdenshope.com for more info on our little guy! Thanks for the help and getting awareness out there!!!!!
NICOL says – reply to this

16

My brother had a form of this disease (MPS III). It is called I-cell. Even though he had a short life, my brother was the most amazing person. I've been through all the hardships that diseases like this can bring, and I promise that any help you can provide is truly a blessing.
Serio says – reply to this

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Although I'm sure Issac's parents are thrilled with more and more people learning about his disease and the donations that this exposure will give, I feel your motives are suspect. You are trying mighty hard to get back into John Mayer's good graces. Mayer has done things like this before with no media exposure. He is a good person, you not so much but one can always redeem.

Oh and for those of you who are in L83 and want to meet John Mayer. Apparently, one of the fan club moderators is giving out the answers to the meet and greet quiz. Apparently, cheaters do win!
jmjm says – reply to this

18

Someone still reads JMs blog…
scott says – reply to this

19

Today i shared a hospital room with this little guy. He was at the hospital getting treatment while I was their getting allergy testing. He is one of the smartest 4 year olds I have ever met in my entire life.
Margo says – reply to this

20

I think it is awesome to see MPS VI being promoted on here. My son has MPS VI too and I constantly am trying to get the awareness out there. There are only about 75 people diagnosed in the US alone with MPS VI. Rare genetic disorders don't get a lot of support from NIH. So families are left to do a lot of the fundraising!
Thanks for posting the info!
Tracy says – reply to this

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This is awesome!!!!!
I went to highschool with Issac's father, Andy. It's great to see this little known disease and Issac are getting a lot of attention.
Pharm says – reply to this

22

I couldn't see the story the site was down - Has anyone contacted Biomarin Pharmaceuticals? I used to work for them and promoted the treatment Naglazyme which is an enzyme replacement therapy for MPS VI. There is supposed to be gov't funding for this if it is not covered by insurance and the treatment is weekly and miraculous - infusions are done at a genetic center.
Alyss says – reply to this

23

Thank you for putting this on your site. My godchildren have MPS IIIA. The youngest passed away when he was 4 and the older two are on borrowed time. This disease is truly horrible and not enough attention is brought to it. We need help in finding a cure. The more this disease gets attention then hopefully the more money and science will go towards finding a cure. John Mayer was awesome for putting Isaac on his site and thank you for doing the same =) With more voices there is more hope!
kris says – reply to this

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it is great to see a story about mps. our son has mps ll (hunter syndrome) we have always known just how special all our mps kids are and it is great to know that others are now learning just how special they are too.
Glend says – reply to this

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Thank you for showing awareness for MPS. I lost my sister to MPS I and i'm glad the disease is receiving recognition.
Jenny says – reply to this

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Re: Pharm – Naglazyme has been FDA approved for over two years. My son receives the weekly enzyme treatment and BioMarin has been crucial in Holden's journey. They have started clinical trials for MPS IV this year! Holden has been on ERT for almost two years and he is in wonderful health!
Pharm says – reply to this

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Re: Jenny –

That is fabulous. Naglazyme is amazing. There needs to be a STRONG focus to get MPS screening in the mandatory newborn genetic screenings by the states. Even though the percent of little ones inflicted is so small - MPS is SO devastating and progressive and when there is a proven treatment for it state screening should be required. Think of the little guys that find out at birth and get the treatment immediately.
Blessings to your family.
kris says – reply to this

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Re: Pharm –
i fully agree with you on the new born screening. our son jarin is only 16 months old and he was only 1 month old when he was dx with mps ll . with the family history we knew to have him tested so with that we were lucky to find out so very early. he started infusions when he was only 11 weeks old.
www.caringbridge.org/visit/jarinburkett
Rhyse says – reply to this

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Isaac, you look amazing!! What a great little trooper you are. Jericho Ranger says Hi and I know you are going to be OK. You have the best parents in the world. Lots of love and prayers coming your way. I bring you into the Jericho Ranger camp and name you Ranger Isaac.
Mark says – reply to this

30

What a wonderful cause… Thank you for helping out.
God bless you.

Mark K6
mpbni says – reply to this

31

Isaac, you are so brave and such a great fighter. Keep getting better, Sweetie!
Cher says – reply to this

32

Thanks for covering this. Hope a cure can be found for Isaac and all those facing MPS soon. Love the attention John Mayer gave Isaac!
cheri says – reply to this

33

What an awesome little guy! He's part of the Jericho Ranger family too!
andy7 says – reply to this

34

Regardless of whether this came from John Mayer's blog; thank you Perez for adding to what John has already did in raising awareness for Isaac's condition. Like John said you only need to meet Isaac and his family for a few minutes to realize how special they are; and Isaac's smile could turn anyone's heart to mush!!! So thank you!!!!!
Jen says – reply to this

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wtf is this? you should do one of these things on cystic fibrosis. CF Is the number one genetic disease killer of young children today. Even though you see theses ads for autisum and diabetes….those two you cant die from unless you dont take care of your diabetes….YOU CAN DIE FROM CF. ugh.
Peach says – reply to this

36

Wow…moving story.
.
Thanks, P, as always for these kinds of posts. We get caught up, don't we, sometimes in the trivial gossip.
.
But the "real" world is out there. And it needs us.
dave says – reply to this

37

GREAT CAUSE, PITY THAT YOU'VE POSTED IT, PEREZ, YOU DISGUSTING CUNT! Where's the PROOF that YOU donate? Where's the PROOF that YOU donate? Where's the PROOF that YOU donate? Where's the PROOF that YOU donate? Where's the PROOF that YOU donate? Where's the PROOF that YOU donate? Where's the PROOF that YOU donate? Where's the PROOF that YOU donate? Where's the PROOF that YOU donate? Where's the PROOF that YOU donate? Where's the PROOF that YOU donate? Where's the PROOF that YOU donate? Where's the PROOF that YOU donate? Where's the PROOF that YOU donate? Where's the PROOF that YOU donate? Where's the PROOF that YOU donate? Where's the PROOF that YOU donate?
Kate says – reply to this

38

Come on Perez, give credit where credit is due…update this post with the pix of Isaac and John Mayer - without any drawings. If you can't resist, just write "Good Guy" at the bottom with a big arrow pointing at JM's face.

Because he is.
jenny says – reply to this

39

Re: Jen – MPS is a death sentence. They are missing an enzyme and without this enzyme their cells build up in their skin, tissue and organs. 10 to 13 years of age is the mortality age. There are 7 types of MPS and only 3 have enzyme therapy available. Let alone the cost of our son's drug ALONE is $30,000.00 monthly. Granted CF is a horrible disease as well, but just because you've never heard of MPS doesn't make it any less devastating. 1 in every 25,000 births is a child afflicted with a form of MPS. Most children are misdiagnosed or over looked. If your child is lucky enough to be diagnosed between ages 1 and 3 you can stop a lot of the damage. Enough said from me. My son has MPS VI and for the rest of his life he will receive a four hour, WEEKLY infusion or until a cure is found. We could not be happier with the publicity from John Mayer and from Perez. Thanks.
Margo says – reply to this

40

Re: jenny – Thank you Jenny!
gabe says – reply to this

41

Re: Jen – Jen, MPS is one of the most devastating diseases that a child could suffer from and I would not wish this disease on anybody.

Enzyme replacement therapy isn't a cure. Even though children are on ERT, the disease still progresses, just at a slower rate. John Mayer and Perez should be commended for bringing it to the attention of the public.
gabe says – reply to this

42

Re: Kate – Kate is right, Perez! Reupload this with the photo of John and Isaac. Perhaps this will allow the awareness to spread even further and help this little boy and his charity. Mayer has done a wonderful thing here, please recognize him for it.
THRSE says – reply to this

43

THANKS PEREZ FOR BRINGING ATTENTION TO MPS, AND OF COURSE TO JOHN M ALSO.. I HAVE JUST LOST MY LITTLE GIRL (MPS 3A) TO THIS GOD AWFUL DISEASE, AND MY OTHER LITTLE GIRL IS ALSO AFFLICTED AND UNDER HOSPICE CARE..THE REASONING BEHIND US MPS FAMILIES NEEDING MORE MONEY FOR RESEARCH IS BECAUSE IT'S VERY RARE AND MOST PEOPLE (AND DOCTORS) HAVE NOT EVEN HEARD ABOUT IT…THEREFORE FUNDING IS ABSOLUTLY NECESSARY…ANY CELEBS READING THIS..WELL HERE'S YOUR TAX DEDUCTABLE DONATION. MPSSOCIETY.ORG…THANK YOU
Alici says – reply to this

44

Isaac you are awesome dude! I don't care if you got this from JMs website, I am just so happy to see MPS getting some attention for a change. I have three children with MPS, my youngest passed away a few years ago and my other two are getting worse every day. We really need to find a cure for all MPS disorders so thank you on behalf of my Ciara, Hunter and Angel Tommy!
Kelli says – reply to this

45

Nice!!! Any awareness is wonderful on this disease. My daughter has MPS I and went through a Bone Marrow Transplant before she was a year old. This is such a rare disease that it is WONDERFUL when someone recognizes it.
kenbo says – reply to this

46

Issac is a wonderful little boy, and I know that his parents are happy that you are helping to give their cause and their hope for a cure some exposure. All of Issac's supporters would love if you could re-post this to the first page so that we can spread the word about the fight against this dreaded disease.
Beth says – reply to this

47

I have had the opportunity to personally meet Isaac and he is the sweetest little guy ever. Thanks for posting this information and getting it out there. Hope you will continue to post information and updates on this story.
Sam says – reply to this

48

Isaac is one of the most wonderful children I have had the pleasure to meet. Him and his family have been through so much. Definitely a worthy cause
kanoe says – reply to this

49

thanks perez!! i'm sure issac is thrilled. hopefully the key to a cure is out there!!
Viv says – reply to this

50

this deserves first page!

Amanda Bynes Was Involved In ANOTHER Hit-And-Run!

Can someone take this girl's license away, please?

Amanda Bynes will finally be appearing court on June 6th for her April 6th DUI arrest, but apparently, she's may have to return very soon after that, because the actress was involved in ANOTHER hit-and-run only a few short days AFTER the first!

[Image via WENN.]

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