Neurofibromatosis News

Steps2Cure Run to benefit Burlington's Neurofibromatosis Northeast - Wicked Local Burlington



Steps2Cure Run to benefit Burlington's Neurofibromatosis Northeast 
Wicked Local Burlington
The Kids Dash, featuring a short course for children ages 5-10, kicks-off at 10:15 a.m., followed by the run at 11 a.m. and the walk at 11:05 a.m. The event aims to provide an opportunity for neurofibromatosis patients, families and friends to come out ...

 


NF Hope Concert held to raise money for to fight Neurofibromatosis - News3LV



News3LV
 
NF Hope Concert held to raise money for to fight Neurofibromatosis 
News3LV
LAS VEGAS (KSNV News3LV) ? At just 9 months old, Emma Leibow was diagnosed with Neurofibromatosis. But instead of letting the fear of what it can be run their lives, her family, including her dad Jeff Leibow who joins us today, decided they were going ...

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Reading resident joins Neurofibromatosis Northeast - Wicked Local Reading



Wicked Local Reading
 
Reading resident joins Neurofibromatosis Northeast 
Wicked Local Reading
Burlington-based Neurofibromatosis Northeast, the non-profit patient advocacy organization whose mission is to find a cure and treatment for neurofibromatosis by promoting scientific research, creating awareness and providing hope and support to those ...

 


Neurofibromatosis Northeast welcomes new development officer - Wicked Local Burlington



Neurofibromatosis Northeast welcomes new development officer 
Wicked Local Burlington
Burlington-based Neurofibromatosis Northeast, a nonprofit patient advocacy organization whose mission is to find a cure and treatment for neurofibromatosis, announces the appointment of Jillian Black as development officer. Black is charged with ...

 


Help the battle against neurofibromatosis at the NF Hope Concert - News3LV



Help the battle against neurofibromatosis at the NF Hope Concert 
News3LV
LAS VEGAS (KSNV News3LV) ? The seventh annual NF Hope Concert is scheduled for 1 p.m. Sunday, Oct. 22, at The Palazzo. In support of those affected by the tragedy at the Route 91 Harvest Festival, the organization will contribute a portion of the ...

 


Jeff Leibow's annual NF Hope concert is growing beyond Las Vegas - Las Vegas Sun



Jeff Leibow's annual NF Hope concert is growing beyond Las Vegas 
Las Vegas Sun
When former ?Jersey Boys? star Jeff Leibow organized the first NF Hope benefit concert in Las Vegas in 2011, he was hoping the event would turn into something more than an annual awareness and fundraiser for the Neurofibromatosis Network, ...

 


Stead Children's Hospital holds symposium on rare genetic disorder - The Daily Iowan (blog)



The Daily Iowan (blog)
 
Stead Children's Hospital holds symposium on rare genetic disorder 
The Daily Iowan (blog)
On Oct. 14, the University of Iowa Stead Family Children's Hospital held a neurofibromatosis symposium in conjunction with the Children's Tumor Foundation. The event took place in the Kinnick Press Box, and participants discussed treatment options for ...

 


Pfizer Creates New Smaller Company to Focus on Rare Diseases - Rare Disease Report



Rare Disease Report
 
Pfizer Creates New Smaller Company to Focus on Rare Diseases 
Rare Disease Report
Neurofibromatosis consists of benign tumors surrounding neurons. There are numerous types of neurofibromatosis with the most common, neurofibromatosis type 1, generally involves nerves near the skin and the most noticeable symptom is abnormal ...
Pfizer spins out SpringWorks Therapeutics biotech PMLiVE
Pfizer spins off new company with four rare disease therapies Pharmaceutical Business Review

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Jack Nicklaus: Shots I Can't Explain - GolfDigest.com



GolfDigest.com
 
Jack Nicklaus: Shots I Can't Explain 
GolfDigest.com
The father was Marty Bezbatchenko, and his son, David, was battling a rare disease, neurofibromatosis. The disease can attack numerous parts of the body, and can lead to tumors all over, including ones on the brain, spine and nerves. David was a ...

 


8 things you should know about genetic disorders - Netdoctor



Netdoctor
 
8 things you should know about genetic disorders 
Netdoctor
Some of the most common conditions include Cystic Fibrosis, Down's Syndrome, Neurofibromatosis and Sickle Cell Anaemia. However, there are lots of other genetic disorders that many may not have heard of such as the skin disorder Epidermolysis Bullosa, ...