In The News
The NF Network Releases Volume 19 of The Network Edge
In partnership with NF Northeast, the Neurofibromatosis Network is delighted to bring you Volume 19 of our science column, The Network Edge, written by science writer Vanessa L. Merker, PhD. This periodic research review presents a summary of recent highlights from NF research and clinical trials in bite-sized pieces, allowing you to easily find and focus on the topics of most interest to you.
Thank You FY22 House “Dear Colleague” Letter Signers
Upon completing our Virtual Hill Visits back in February, we asked for your help in contacting members of the House of Representatives. Your requests asked for support of continued federal funding for NF research, and we are proud to announce this year’s FY22 House “Dear Colleague” letter signers.
Update on NF1 Research from SpringWorks Therapeutics
SpringWorks Therapeutics is currently conducting a clinical trial for an investigational MEK inhibitor called mirdametinib in patients with NF1-associated plexiform neurofibromas. Their update includes an FAQ with information on mirdametinib and key information on clinical trials.
IQVIA Conducting 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.
NF1 Survey: Communication, Swallowing, and Hearing for Children and Individuals with NF1
California State University seeks to learn how communication, hearing, and swallowing difficulties impact individuals with NF1.
NF1 Research Study: iCanCope Mobile Application
Dr. Frank Buono's DoD-funded study sets out to understand the impact of the iCanCope - NF mobile application on individuals suffering from chronic pain due to NF1, with the goal of reducing pain symptoms. If you are currently experiencing NF1 pain, you are invited to participate in this clinical trial.
The REINS Collaboration Recruiting Patient Representatives
As patients and caregivers of those living with neurofibromatosis, the REiNS Collaboration seeks your help in the fight to cure all types of NF by helping to design clinical trials. Joining the patient representative program is a chance for you to make a difference in finding treatments for NF.
The NF Network Releases Volume 18 of The Network Edge
The Neurofibromatosis Network is delighted to bring you Volume 18 of our science column, The Network Edge, written by science writer Vanessa L. Merker, PhD. This periodic research review presents a summary of recent highlights from NF research and clinical trials in bite-sized pieces, allowing you to easily find and focus on the topics of most interest to you.
University of Utah Conducting Study for Adults with NF1
Researchers at The University of Utah, Division of Medical Genetics are seeking participants for an ongoing study for adult patients with NF1. The trial will evaluate the effect of Vitamin D supplementation and bone mass in participants in the study.
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.