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What should the next FiveHumans cause be?



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13 Comments
2008-07-18 17:23:12 ET

I think your new cause should be Noonan Syndrome. Why?

It is believed that 1 in 1,000 to 1 in 2,500 children worldwide are born with this condition. Each day a child is born with the condition. It's possible that people carry the gene yet are undiagnosed.

Thank you,

Mom to a Noonie (child with Noonan Syndrome)

Val Mom to a Noonie
2008-07-19 16:03:13 ET

Noonan Syndrome varies on how much it affects a person. And the struggles can be mild to severe. You don't even have to have a history of it in your family. It's a worthy cause to help.

A beautiful little Noonie's Mom
2008-07-19 22:44:54 ET

Please look into Noonan Syndrome as your new cause...this is a genetic disorder that affects so many people, yet so many people have never heard of it. It can affect anyone as it can be both hereditary and spontaneous.

2008-07-23 08:14:30 ET

Thanks for considering Noonan Syndrome.

Lori Gillam
2008-07-28 10:47:20 ET

Please pick us!!! Noonan Syndrome needs your help. We as parents need your help! Most doctors and dentists I've encountered over the years have never even heard of this genetic condition. I can't tell you what it feels like to be a Mom and bring your child to the Doctor and the Dr. has no idea what Noonan Syndrome is, and needs to look it up!
Please help our children and adults by giving awareness by "advertisement" to Noonan Syndrome. Hopefully you can help us make a difference. I would proudly wear my t-shirt !
Sincerely,
Lori Gillam
Mommy to Allison age 13 A beautiful child with Noonan Syndrome

2008-07-28 12:19:54 ET

Please feel free to visit Carepages.com and enter TheChristmasMiracle to see what living with Noonan Syndrome is like. My daughter is not even 2 yet and has been hospitalized well over 20 times, has had 4 major surgeries, has been intubated at minimum, 15 times(I lost count). She doesn't roll, crawl, pull up to stand and doesn't walk. She uses sign language as her primary form of language. She has a GJ tube to eat.

As Lori said, nothing is more frustrating than having a doctor tell you that they have never heard of Noonan Syndrome. We need more public awareness. Please help us help our children.

A Noonie
2008-07-28 15:31:46 ET

Please consider NS as your next cause. Its a relatively unknown disorder but affects so many of us. Knowledge IS power and we CAN make a difference.
Go people power!!
A Noonie

Lisa Czapka
2008-07-28 23:39:35 ET

Much praise for including Noonan's Syndrome in your web page. In all ways, many of which are beautiful and beyond comprehension, Noonan's Syndrome has impacted our lives, as my 4 year old daughter was diagnosed at birth and has endured many hospitalizations, surgeries, hours of therapy, and curious stares from those who do not know about this condition. When doctors cannot provide a path of treatment, its scary and frighening. Please help us create awareness which will enlighten and bring greater knowledge and improved treatments for these little noonites!

Thomas in Atlanta
2008-07-29 07:16:07 ET

As a father of a child with Noonan's Syndrome (PTPN 11), I can attest to the amount of support, both emotional and otherwise, that both the patient and his or her parents need. This is a great way to raise awareness of a very common (yet not well publicized) issue that many families must navigate. Thank you for the opportunity.

Angela in North Carolina
2008-07-29 09:04:11 ET

My daughter was diagnosed with NS at age 3. I don't know what I would have done without the Noonan Support group. I am always being asked "What is Noonan Syndrome". Thank you for including information about NS on your website. Knowledge is Power.

Angela -- mom to Courtney, now 6 years old with Noonan Syndrome, Mitral Valve Prolapse, Hydrocephalus

Marilyn in Tennessee
2008-07-29 17:30:52 ET

It would be great if the world was aware of Noonan Syndrome. My son has a very complex medical history which involves an avg. of 100-120 appts per year. He is now 16 and it has taken a toll on our whole family financially, emotionally,and socially. Out of his 14 different Dr's, only 2 have heard of Noonans. He is growth hormone deficient but can't take the hormone shots to grow as the seven rare tumors in his ankles,knees,and jaws will also grow. He struggles in school both academically and socially and because NO ONE has ever heard of Noonans he doesn't get the help he needs. It's sad when he asks for 2 weeks off from Dr. appts on his Christmas List. Please consider this syndrome as our noonies face so many misunderstood diagnosis that impact their daily lives.

Niki Hershey
2008-08-06 08:42:54 ET

NOONAN SYNDROME...We have bunches of families voting for NOONAN SYNDROME! Thanks FiveHumans for your help with our cause. We need the awareness desperately. Thank you, Niki Hershey mom to Joshua-12 Chase-5 1/2(NOONAN SYNDROME) & Jagger Cole-4

Angie Crabtree
2008-10-05 22:16:37 ET

Wow, I really think Noonan Syndrome should win. I've never even heard of it!! That is NOT ok!! I just researched it on-line and realized how many people I have encountered with this condition. More people really, really, really need to know about this. Please.



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