A Worthwhile Cause
CLICK HERE to read up on and donate to a very worthwhile cause!
"The Children's Tumor Foundation is a non-profit 501(c)(3) medical foundation, dedicated to improving the health and well being of individuals and families affected by the neurofibromatoses (NF).
The mission of The Children's Tumor Foundation is to:
* Encourage and support research and the development of treatments and cures for neurofibromatosis types 1 and 2, schwannomatosis and related disorders (hereafter collectively referred to as "NF");
* Support persons with NF, their families and caregivers by providing thorough, accurate, current and readily accessible information;
* Assist in the development of clinical centers, best practices and other patient support mechanisms (but not including direct medical care) to create better access to quality healthcare for affected individuals; and,
* Expand public awareness of NF to promote earlier and accurate diagnoses by the medical community, increase the non-affected population's understanding of the challenges facing persons with NF, and encourage financial and other forms of support from public and private sources."
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Thank you Perez!!!! My son has NF, it is a horrible disease that receives very little exposure.
This is great! Thanks for posting.
Check my donation website…
www.active.com/donate/nfdisney2011/teamdenver
"Through Research"….in other words all the money goes to very highly paid Con Artists while the kids get stuck with poverty rations of SSI & Medicaid (the researchers get that money too).
Thank you, Perez Hilton, for giving exposure to such a worthwhile cause! The CTF is a VERY worthy cause, and I cannot stress enough the importance of research. There is no cure, and NO treatment. It is a progressive disorder that can lead to too many things to list here. So I take offense to a comment about money going to "Con Artists".
The CTF is the front runner in research and they have come a long way since they began. It is not right to criticize such an organization without looking into it properly. I have NF1, and I have been lucky to have it be mild, but friends have died from brain tumors, cancer and other complications.
Unless you have lived with such a disorder, or any disorder which cannot be treated, managed well or cured, you wont understand the importance of research.
No one knows about this disorder and I thank you so much for putting the word out on such a highly read blog. We all really appreciate it.
Perez, Thanks for putting this out there. I have NF1.
Thank you so much for posting! My daughter has NF and I appreciate it! The research done to treat and one day cure neurofibromatosis is invaluable and one day SOON something will become available to help all those suffering with NF. www.teamjuliabug.com
awesome thanks perez for putting this out to for more people to know about. there is so much about this disorder that we don't klnow about and need to know about in order to treat. and not enpught people know about it!
Thanks Perez! My 8 year old currently receives chemo to shrink an optic glioma as a result of her NF. We are walking in her honor on 10/2.
www.active.com/donate/batterypark10/walk4mary
Thank you x1000. I have NF1, myself. I have a fairly mild case of it and I have had 10 tumors removed from my body. I also part took in a clinical trial study at UCLA (pssttt…they are STILL taking new participants)
If we can spread the word of NF, the better educated society will be, and we'll be that much closer to finding a cure.
Thank you again….xoxo
This money does NOT go to con artists…My grandson has this horrible disease and I'm raising money for him right now! Every single penny goes directly to the Children's Tumor Foundation! You can CHECK OUT this, or any other, charity at www.charitynavigator.com. The CTF earns 4 * (TOP RATED)
Re: Pam's Silicone Breast – It's really nasty of you to accuse the CTF of being a "Con artist". People are suffering with this every day. I and so many of my friends have NF and some have lost their hearing, balance, basic life functions, and more: cancer, tumors, blindness, depression, spine problems, bone deformities. So for you to say the CTF, the foundation that has done so much for us is insulting. Being catty isn't cute. Nastiness wont solve any disorder, disease or aliment.
Re: Grandma Faye – As a mom w/ a child w/ NF1. I am a firm believer that NF Inc is a GREAT non profit advocating for people affected by NF without paying $900,000 in salaries like CTF, check it out at Guidestar. Its true!
Re: kcn3112 – did you know that CTF pays out over $900,000 in salaries a year! NF Inc. doesn't. NF Inc has one paid employee, the rest of earned $ goes direct to NF. No expensive NY offices or big salaries. Think about it.
Re: Wakintexas – did you know that CTF pays over $900,000 in salaries. Thats before their NY property taxes. NF Inc has one paid employee. Your hard earned dollars get to advocacy, research, education much quicker at NF Inc because of the lack of "employees"