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Articles

Living with NF

Our NF Heroes (Genesis Reyes) (3)

NFChampion-NFolkGenesis Reyes Hero 3

The Children's Tumor Foundation is inspired and encouraged by those that face neurofibromatosis with resilience, fortitude, and bravery every day. In honor of their strength and courage, the Foundation refers to people who live with this disorder as "NF Heroes."

CTF is also fortunate to have many "NF Champions," contributors that go beyond the norm to help fight NF, regardless of their connection to neurofibromatosis.

Please click below to read their stories and view their profiles.

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To nominate your NF Hero or Champion, please send a brief story along with a picture (1mb or smaller) to Mary Vetting at mvetting@ctf.org

NF Champion Kelly DeHart

NF Champion Kelly DeHart

KellyDeHartNFChampion 300w"I've been battling NF2 since I was little. I started losing my hearing around age 19 and was completely deaf by 21 years old, at which point I also lost facial function on the left side."

"During the summer of 2013, I made plans to work at a camp and to graduate college. However, I began feeling very ill and my doctor diagnosed me with hydrocephalus caused by an acoustic neuroma pressing on my brain stem. I had to undergo urgent surgery, had to miss my graduation ceremony, and had to decline the camp position for the summer. My life as I knew it had come to a screeching halt."

"This surgery was one of the most serious of my life, and I've had many. My entire right side weakened and I lost the ability to speak, write, hear, and eat. I had to have a feeding tube inserted, and had extensive physical therapy. My doctors said it would take at least a year for me to fully recover. Boy did I prove them wrong! See, NF might try to stop me, but I'll never let it. A disability will never define me. I believe how we overcome challenges is what defines us."

"Shortly after my operation, while still in the hospital, I graduated. I also reapplied to work at the camp, for their summer 2014 session. At only five months post-surgery, I took a two-week road trip across the United States with my best friend, and seven months after my operation, I traveled to Costa Rica."

"I admit my life isn't the easiest, but it's so worth it."

by Kelly DeHart  

Help Kelly DeHart Fight NF

 

Our NF Heroes (Philip Moss)

NFChampion-NFolkNFHero-pMoss-Small2

The Children's Tumor Foundation is inspired and encouraged by those that face neurofibromatosis with resilience, fortitude, and bravery every day. In honor of their strength and courage, the Foundation refers to people who live with this disorder as "NF Heroes."

CTF is also fortunate to have many "NF Champions," contributors that go beyond the norm to help fight NF, regardless of their connection to neurofibromatosis.

Please click below to read their stories and view their profiles.

nominate-button2
To nominate your NF Hero or Champion, please send a brief story along with a picture (1mb or smaller) to Mary Vetting at mvetting@ctf.org

NF Hero Genesis Reyes

Genesis M Reyes"Our ten-year-old daughter, Genesis, was diagnosed with neurofibromatosis in August 2003 at the age of four months. After multiple MRIs to figure out why her right eye was swollen, we were told that she had NF1 and a tumor on her optic nerve.

"Since then, our beautiful daughter has endured several MRIs and 11 surgeries to reduce the size of plexiform neurofibromas located in eight places on the right side of her head, mouth, and brain. Genesis has lost almost all vision in her right eye because of the tumors, and she suffers from low muscle tone, joint pain, deformation, ADHD, and another condition called Ehlers Danlos Syndrome Hypermobility.

"Throughout the years, Genesis has proven to be a fighter, beating all the odds and expectations after surgeries and surprising her doctors with her will to prove not only them but the world wrong. Genesis is an incredible, spunky, and kind-hearted, little lady. She is an amazing big sister to our three-year-old daughter and she loves to play with her Littlest Pet Shop toys, sing, dance, and spend time with her grandparents. She not only inspires us but everyone around her with her loving nature and positive outlook on life. We are so proud of her.

"Genesis has an amazing team of doctors, a total of eight specialists in different areas, at Georgia Regents University Children's Hospital, who not only monitor her but love her and care for her like family. Her support team of family and friends is strong and in abundance. She does not stand alone against this disorder; we all stand hand-in-hand with her."

-- Gisel Elsheikh, Genesis' mother

 Help Genesis Reyes

NF Hero Philip Moss

PhilipMossFeaturedNFHeroPhoto2"Our seven year old son, Philip, was diagnosed with NF1 in September 2011 after surgery to remove what we thought was a swollen lymph node. Since then, our brave boy has learned all about neurofibromatosis, and has had several MRIs and a PET scan to monitor two large plexiform tumors in his neck.

"Despite the short time since his diagnosis, he has been our poster child for NF1, educating his friends and family about the genetic disorder. Philip recently participated in Nashville NF Walk and continues to raise awareness and funds for neurofibromatosis research. He is an extraordinary example of how resilient children can be in the face of this disorder.

PhilipMossFamilyFeaturedNFHeroPhoto-WEB"Our family is currently working to connect with other NF families in the Birmingham, AL area to formalize a peer support group and better understand how and when to communicate information about NF to our children, as well as to provide an outlet for discussion of the many ways neurofibromatosis affects individuals and families.

"We are thankful for the outstanding care of Dr. Lane Rutledge and Dr. Bruce Korf at the University of Alabama at Birmingham Genetics Clinic and feel fortunate to live so close to a facility that provides such excellent guidance and treatment.

"We have a life verse that we often say, and Philip knows it well. Jeremiah 29:11 - 'For I know the plans I have for you says the Lord, plans to prosper and not harm you; plans to give you hope and a future.' "

• Renie Moss, Philip's mother

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NF Chat Room FAQs

last updated December 11, 2013

What is NF Chat?

Chat Space
NF Chat is a chat platform where people share text messages they type. NF Chat is currently configured for one single chatroom.  People who are logged in have their names appearing in the right hand column.  They type their messages on the bottom and everyone's messages appear in chronological order in the top left. You can also send a private message to a member in chat.

Where do I go to login or register for a user account on www.ctf.org ?

Login or Register
1) In the upper right of our homepage select the Login/Register button


register login popup

2) You will get the above pop-up dialog.

How do I get to chat.


Login to our website first ( see above).  Then, from our homepage, hover over "Living with NF" on our top menu and then click the "New NF Chat Room" selection in the right drop-down column

NF Chat Menu Item

What is the www.ctf.org account registration form like?

From either of the two places mentioned in the previous quesiton, selecting Register will get you to the screen shown here:
registration form

Fill in all the required information, including the sometimes hard to read Securtiy Code and press the REGISTER button to submit the form.

What happens when I submit the registration form?

As soon as you submit a properly completed registration form you'll get the following notice on your screen.registration complete notice 2

How can I tell if I am logged in or not?

Login or Register


1. You will know you are not logged in when the upper right still says "Login/Register".


Logged In

2. You will know you are logged in when the upper right displas "Logged in as: <YourUserName     Log out"


Access Denied

3.  You will get a message like the above if you go to the NF Chat and you are not first logged into the CTF.org website.

What if my username and password don't work?

If you try an incorrect username and password you will get the following screen and you can try again. 

incorrect credentials

Remember that both your username and password are case-sensitive and you must use lower-case and upper-case letters just as you did when you first registered.

If you still don't succeed in logging in, then you can reset your password by selecting "Forgot login".  The details for this procedure are in the next FAQ.

Passwords are encrypted before they are stored on our server, so even the system administrators cannot recover your old password.  They can only set a password for you.

Are usernames and passwords case sensitive?

The password for your ctf.org account is case-sensitive.  A good habit is to always record any passwords you create clearly indicating which letter are upper-case and which lower-case. It is also a good idea to avoid creating usernames and password with the numbers 0 and 1 which you might later get confused with the letters O and l.


Username: mike55
Password: Big-texan

Because passwords are case sensitive, the password Big-Texan will fail to log you in , because the T shoud be a lower-case t.

The username is not case-sensitive.





How can I reset my password?

You can reset your password by selecting "FORGOT LOGIN" from the Login dialog box.

login

That brings up this dialog which allows you to either retrieve your Username or reset your password.

Lost Username or Password

Check "Lost Password" and additional fields will show to request a password reset.

Lost Password

Enter your Username, Email Address, and the one-time anti-spam security code and click "SEND PASSWORD" to submit your request.

Password Reset Notice

I forgot my username. How can I recover it?

You can recover your username if you still have the same email account you used to use.  Select forgot password:
login


Select " Lost Username"

Lost Username or Password

Fill in the form

Lost Username

And click "SEND USERNAME".  You should get an email with your username.

Can Autocomplete cause login problems?

Various browsers and browser add-ons offer to fill in forms for you based upon remembered form entries.  This can be fine, as long as you don't change passwords, but it can sometimes be quite confusing when you change your password or request a password reset on ctf.org and then have a situation where your browser is trying to enter the previous password for you.  The secret is to carefully read any dialog boxes that pop-up during login and learning how to update your auto-complete when necessary.

Are there separate chatrooms for teenagers and adults?

No, by our design, there is only a single chatroom and no way for users to create additional rooms.

My spelling is terrible. Is there a spell checking where I type my chat messages.

There is a built-in spell checker but you are free to misspell.  Most other people are pretty good at understanding misspelled words.  Many people create shorter misspelled versions of words just to type fewer characters.

Contact Us

Children's Tumor Foundation
120 Wall Street, 16th Floor
New York, NY 10005-3904

Phone: 212-344-6633

info@ctf.org