In The News

IQVIA Conducting New Research Study for Individuals with NF1 and Plexiform Tumors

IQVIA, a healthcare research firm, is currently conducting a new research project measuring pain associated with plexiform neurofibromas. By participating, you will help researchers understand the complexity and pain associated with PNs, which may lead to new treatments.

Entertainers Share Talent and Support During NF Hope Concert: The LIVE Interviews

Members of the entertainment community sought out ways to help the NF cause following the NF Hope Concert Live Stream. With the overwhelming support, Jeff Leibow launched The LIVE Interviews.

Inspire Hosts “Summertime Life Hacks: Kids with Special Needs”

Inspire believes that “Together, We’re Better.” Providing online support communities for families and individuals around the world, Inspire seeks to bring a sense of hope and peace of mind through their summer discussion series.

CFC Opens Special Solicitation for COVID-19

In light of the ongoing pandemic, members of several federal departments and agencies sought ways to do more to help during COVID-19. The Combined Federal Campaign has opened a special solicitation to aid CFC-approved charities as they face unprecedented challenges.

From Graduate to Advocate

Rachel Sakofs, a Speech Language Pathologist and alum of MGH Institute of Health Professions, uses her IHP education to help her son and raise awareness of his rare disorder.

Local teachers speak out in Washington for a cure for a rare disease

Stephanie Ham and fellow first-grade teacher Lauren Hanrahan recently went to Washington, D.C. to fight for funding for a rare disease, Neurofybromatosis Type 2, which Hanrahan has.

The Nation’s Largest Clinic for Neurofibromatosis Helps a Brave Boy Avert Life with a Breathing Tube

Dani and John Boyer knew there was a 50–50 chance that their children might inherit John’s disease.

Two Local Teachers Raise Awareness to Spread Kindness and Make Change

A video has gone viral in support of NF awareness thanks to these two friends.

Perceived Fatigue in Children and Young Adults with NF1

Investigators sought to understand and explain the prevalence and severity of perceived fatigue in children and young adults affected by neurofibromatosis type 1.

Kim Bischoff, Executive Director of NF Network, is a #TCFGoalGetter

#TCFGoalGetters don’t just dream big, but take the leap to pursue their passion. Check out Kim’s story and her inspiration behind her work at the NF Network.

Regina Vasquez Runs 5K to Support Neurofibromatosis Research

South Florida Realtor Regina Vasquez, of Beachfront Realty, participates in the Neurofibromatosis Network #NFStrong 5K for Neurofibromatosis.

Pigs Help Kids Fight NF1

Cutting edge research being done at the UW-Madison NF research facility means hope for the Geier family.

You’re Perfect! - A Mother's Journey

‘I need to tell you something.’ He teared up. ‘How do we fix it?’ I took my sweet little girl to the car, and buckled her in. ‘There’s nothing wrong with you. You’re perfect!’

Immune cells determine how fast certain tumors grow

Study suggests new approaches to treating NF1 brain tumors

Identical Twins Who Look Nothing Alike

Adam and Neil Pearson are identical twins, but you’d never know it from looking at them. Listen to their story in Jonathan Braue’s deeply affecting short documentary, The Pearson Twins.

Mom Blazes Path to Cure for Son’s Rare Disease

Nicole Henwood was told her son, A.J., had an incurable disease. She has set out to change that.

Neurofibromatosis Northeast Advocates for Funding

Karen Peluso of NF Northeast, joined 82 other individuals from 23 states to advocate for neurofibromatosis research funding.

$5.4 million coming to UAB for research into genetic disorder

The Gilbert Family is backing heavy research into gene therapy.

Fashion Blogger Uses Clothes to Hide Tumors

Model Arooj Aftab, 22, used oversized clothes to hide tumors on her hips.

Terminally Ill Gamer’s Wish Comes True

Rockstar Games have granted a terminally ill gamer’s wish to play their upcoming title.

Unique tricycle helps boy feel normal

AJ Stasio received the surprise of the summer when a stranger purchased an adult tricycle for him as a means of mobility.

World Record Holder Seeking Cure For NF

World Record Endurance Marathoner Becca Pizzi will run the Falmouth Road Race on Sunday, August 19th as part of the Neurofibromatosis Northeast Team.

Join two-time World Marathon champion Becca Pizzi for youth running camp

Two-time World Marathon Champ Becca Pizzi and ultra marathoner Scot DeDeo for the first annual Kids Running Camp.

Selumetinib Continues to Show Promise in Children with NF1

An investigational drug called selumetinib can shrink tumors in children and young adults with a genetic syndrome NF1.

Gov. Charlie Baker declares May NF Awareness Month

On May 1 Massachusetts Governor Charlie Baker and Lieutenant Governor Karyn Polito signed a proclamation officially declaring May Neurofibromatosis Awareness Month.

Kids Day: Team medical approach helps teen keep smiling

When Barbara Langdon's son, Finnian, was 4 months old, she found a pea-sized lump on his back.

Family, videography key for teen battling rare disease

Alex Leisenring, a high school senior, dreams of one day becoming a videographer.

This one's for Joan

Jeremy Clements, who drives the No. 51​​​​​​​ in the NASCAR Nationwide Series, wanted to do something special to honor a fan who recently passed away.

Harry Potter star's child diagnosed with NF1

Tansy Smethurst, whose mum Rakie Ayola plays Hermione Granger in the Harry Potter play, was on holiday when she suddenly developed spots on her body and needed to be rushed to hospital.

Patriots tight end makes special visit

Make-A-Wish transformed 7-year-old Ryan Feeney's backyard into a New England Patriots-themed football field, complete with Patriots tight end Rob Gronkowski.

Tim Tebow meets fan with NF during game

During a St. Lucie Mets game against the Charlotte Stone Crabs late last month, Tim Tebow made a young fan’s day.

Make-A-Wish throws party for NF teen

15-year-old Ayrianna Day Chief was treated a Hollywood party complete with performers and paparazzi courtesy of the Make-A-Wish Foundation.

I lost my voice, but help others find theirs

Being blind wasn't going to stop Alex Hubbard from becoming a journalist, but his NF2 diagnosis almost did.

Broadway stars raise funds for NF

Jeff Leibow has called upon Broadway friends including Chad Kimball and Mary Callanan to appear May 8 at a concert at New York’s SubCulture nightclub to raise money for the Neurofibromatosis Network.

Jeff Leibow shares personal mission

Jeff Leibow recently appeared on Good Morning Washington to raise awareness for neurofibromatosis.

Live life to the fullest

The trophies and scars Leah Manth has collected during her lifetime aren’t just rewards for participating in sports.

NF found in 15th century

A Renaissance painting in Mantua, Italy contains the portrait of a maidservant with neurofibromatosis.

Learning to love yourself

As a teenager, her mother told her, “Only someone kind would want to be with you.” Then, in her early 20s, Janet Miller began to notice small bumps on her skin.

Why this boy chose not to have his facial tumors removed

Ethan D’Amato was born with a number of facial tumors, but he chose to not have them removed rather than risk losing his ability to smile and laugh.

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