Event Highlights

Las Vegas' NF Hope Concert Returns for Its 13th Year!

One of the greatest afternoons in Las Vegas entertainment returns for its 13th year to raise funds and awareness for neurofibromatosis. Bringing together friends, family, and supporters of the NF community, please join the NF Network for Las Vegas' 13th Annual NF Hope Concert this October!

Golf fundraiser marks decade of supporting research of genetic disorder

Links for Lauren celebrated its 10-year anniversary earlier this month. Inspired by his daughter, Lauren, Ryan Geier has been honored to see how the community continues to rally and raise funds for a cause near and dear to his heart.

Let the Bengal Bags Fly: Ohio Cornhole Tournament

Inspired by his younger cousins, Peyton and Keltyn who both have NF1, Kory Moreland wanted to spread the word about neurofibromatosis. Using his Bengals superfan platform, Kory is hosting his first cornhole tournament to raise funds and awareness for NF.

Thank You, Together We're Making a Difference!

As 2022 comes to a close and we venture into 2023, we reflect on your unwavering compassion and generosity. From the bottoms of our hearts, we thank you for your continued support of the NF Network and the thousands living with neurofibromatosis. Our work wouldn't be possible without you! See how we're making a difference together.

GivingTuesday: What It Is and How You Can Help the NF Community

After a holiday of gratitude and time spent with loved ones, GivingTuesday is a global movement to remind us that gratitude can go beyond expressing what we are thankful for. You can make a difference by joining in the celebration and worldwide day of giving and giving back.

NF HOPE CONCERT Returns to The Smith Center for the 12th Annual Event at Myron's

2022 brings a variety of performers to the stage to raise awareness for neurofibromatosis. Join us for our twelfth year at Myron's at The Smith Center, LIVE and in-person in beautiful Las Vegas or participate from the comfort of home through the virtual livestream and online auction.

MGH and Harvard Conducting Resilient Youth with NF Study

Researchers at Massachusetts General Hospital and Harvard University are conducting a Department of Defense-funded a research study to compare two programs that teach stress and symptom management skills for adolescents with NF1, NF2, or schwannomatosis. Teens ages 12-17 are invited to participate in this virtual program.

"Entertaining and Enchanted:" Chicago's Return to Live Music

In late June, the NF Hope Concert returned to the Chicagoland area for its third annual event. With a talented local lineup of performers with special appearances by prominent members of our NF community, it was a magical evening celebrating how far we've come in the NF community and banding together to help continue the progress we've made together.

Join the NF Network Near You!

Our event chairs are hard at work preparing for an engaging events season. This summer and fall, we are excited to bring our new and long-running events to areas across the country. Our #NFStrong events and NF Hope Concerts are entering a new phase to bring excitement and community to our NF friends and families, and we look forward to having you join us!

Anxiety, Clinical Care, and Other NF Network Free Webinars

Here at the NF Network, it is our mission to keep you iNFormed on breakthroughs in NF research and other updates in the world of NF. Reaching out to experts in the medical community and beyond, we have created a series of free educational webinars to bring NF news, tips, and resources to the NF community.

Win #7 of "55" Signed by Gillian Anderson and Gary Yap

55 is a comic book series by Gary Yap, starring Gillian Anderson. In support of the thousands living with neurofibromatosis, we are raffling off number 7 of issue #1, signed by Gillian and Gary themselves! There are only 55 copies of 55 #1 that exist, and even fewer signed by both Gillian and Gary. Now is your chance to win this exclusive prize!

Fun for the Family: NF Network Events Summer and Fall 2022

Our event chairs are hard at work preparing for an engaging events season. This summer and fall, we are excited to bring our new and long-running events to areas across the country. Our #NFStrong events and NF Hope Concerts are entering a new phase to bring excitement and community to our NF friends and families, and we look forward to having you join us!

Reelin' for NF Research on Kelly's Wings

Kelly DeHart was a vibrant and loving young lady whose smile lit up a room. In her memory, Kim and Will Carpenter are hosting a fishing tournament to honor their daughter and support the thousands of others living with neurofibromatosis.

Thank You for Making a Difference

As we enter a new year, we reflect on your unwavering compassion and generosity. From the bottoms of our hearts, we thank you for your continued support of the NF Network and the thousands living with neurofibromatosis. Our work wouldn't be possible without you! See how we're making a difference together.

Be a Part of ONE VOICE for the NF Community

The NF Network Advocacy Program will once again meet with hundreds of congressional offices to educate Congress on the importance of continued federal research funding for neurofibromatosis. Help us speak out, speak with, and speak for the NF community by sharing your story with us.

"Incredible:" Celebrating Las Vegas' 11th Annual NF Hope Concert

After years of transitioning and pivoting to serve the virtual format, welcoming back a live audience for Las Vegas' 11th Annual NF Hope Concerts was one of many incredible moments from this year's show. Reflecting on this special afternoon of entertainment, thank you just doesn't seem big enough.

NF Hope Concert Returns to Las Vegas LIVE

After over two years of virtual shows, the NF Hope Concert returns to the live stage at Myron's Cabaret Jazz at the Smith Center in Las Vegas! Joined by a star-studded cast of local and national talent, this unforgettable evening will be a memorable night celebrating and supporting our NF friends and families.

"Simpler Times:" A Letter on Links for Lauren

COVID has forced us all to adapt to our new world, but for those of us affected by NF, it’s a reminder that NF didn’t take a vacation from our everyday lives. As a father of an 11-year-old daughter with NF1, Ryan Geier shares how a longing feeling for “simpler times” is always present and how that played a role in their annual charity golf outing, Links for Lauren.

Las Vegas' NF Hope® Concert Returns LIVE!

After two years, the NF Hope® Concert will once again be live and in-person! For the last 18 months, the NF Hope Concerts have taken place exclusively online to keep our patrons and families safe. With Las Vegas finally reopening, it's time to welcome back the first live audience since 2019!

Join #NFStrong in Cities Across the Country

Through family-fun activities and opportunities to connect and engage, our #NFStrong events provide a safe, positive, and entertaining environment to spread NF awareness and build new friendships with our NF communities across the country. The NF Network invites you to join us in a city near you, or register to walk with us virtually and race at your own pace!

Summer Fun with Camp New Friends

Camp New Friends is a summer camp designed to connect other children and young adults with neurofibromatosis in a fun, social, and safe environment. Led by peer leaders who also live with the genetic disorder, campers participate and choose from a myriad of entertaining summer activities.

10 Years of Hope: The NF Hope Concert Story

As we celebrate a decade of NF Hope Concerts, co-founder Jeff Leibow reflects on some of the highlights from the past 10 years of shows. From the first call he made to Kim at the NF Network, to the decision to expand to new cities and pivot to livestream events, Jeff shares the incredible journey of the concerts and celebrates a proud milestone of raising over $1 million for neurofibromatosis.

Celebrate Broadway with NF Hope Concert Live Stream, Second Edition

Theater royalty and Broadway's brightest stars join the all-star line-up for the NF Hope Concert Live Stream - Second Edition on Sunday, May 2nd. Join us for a night of entertainment in support of the NF Network and the thousands of NF families across the country who need our help.

Be Prepared and “Make a Plan”

As vaccinations for COVID-19 continue to roll out in the early part of 2021, it is essential to stay connected with your NF specialists and be proactive with your NF care. Our friends at AstraZeneca have compiled a helpful guide to “Make a Plan” that will continue care while also taking COVID-19 safety protocols into account.

Halls of Congress Come Home: Virtual Hill Visit Days

In a year like no other, advocates participating in the NF Network Advocacy Program will host their annual congressional meetings virtually. Gregg and Becky Erickson reflect on their experience in the program and share their thoughts on advocating from home.

Our Sincerest Thanks: NF Network Annual Appeal

In a year full of ups and downs, we are grateful to have your partnership in the fight to end NF. YOU have ensured that we can continue our mission-related initiatives of education and awareness while offering hope and support to those affected by NF.

Band Together Brings Local Bands and Headliners to Support NF Research

Multi-Platinum recording artist Phillip Phillips, Grammy Award winning band The Okee Dokee Brothers, and more come together in a virtual concert to raise funds for NF research at UW-Madison’s Biotechnology Center.

Celebrating a Decade of NF Hope Concerts

Following the success of Las Vegas' 10th Annual NF Hope Concert, concert co-founder Jeff Leibow reflects on the memorable moments over the past 10 years and shares his gratitude for those who have supported the event every step of the way.

Yale New Haven Hospital Opens New NF Clinic

With the hard work from Dr. Asher Marks and Dr. Frank Buono, the duo have helped found a new NF clinic at Yale New Haven Hospital. The clinic, led by Dr. Marks, will offer a multi-disciplinary team to provide exceptional, coordinated, world class care to neurocutaneous syndrome patients regionally, and contribute to the community nationally.

Fun Before Back to School: Teen Game Night with the NF Network

As summer started to cool off and preparations for back to school took place, teens and young adults of the NF community came together for one night to act out charades and make new friends with other kids across the country.

Stay iNFormed with the NF Network Summer Webinar Series

Summer is a time for fun, relaxation, and time with friends and family. The NF Network is pleased to present a series of educational webinars and virtual activities this summer to connect our NF community and provide new opportunities for growth and entertainment.

Camp New Friends Goes Virtual

Camp New Friends offers children and teens with neurofibromatosis (ages 7-17) seven days and six nights of summer fun and social connections. While this session is moving online, Camp New Friends will be nothing like the virtual classrooms you are used to attending!

Win a Zoom Session with Gillian Anderson

Following her conversation with NF Hope Concert Co-Founder, Jeff Leibow, during the NF Hope Concert Live Stream, you have the opportunity to enter the raffle win a Zoom session with Gillian Anderson!

Taking the NF Hope Concert Online

This country and the world have been impacted in ways we never imagined, especially for those living with rare diseases like NF. Join us for the inaugural NF Hope Concert Live Stream on Monday, May 4 for a night of entertainment in support of the NF Network and the thousands of NF families that need our help.

Neurofibromatosis Network and NF Hope Concert Launch #MyHope4NF Campaign

In these times of fear and uncertainty, it can be hard to stay positive. The NF Network and NF Hope Concert are aiming to share some light and hope with the NF community and continue to raise NF awareness with their #MyHope4NF campaign.

A Message from NF Hope Concert Co-Founder, Jeff Leibow

In light of the spread of COVID-19, the NF Network and the NF Hope Concerts bring the difficult and proactive choice to cancel the upcoming concerts in both Chicago and New York City.

Former "Jersey Boy" Unites Area Talent for NF Hope Benefit on March 29th

Naperville's Wentz Concert Hall will be the site of the third annual benefit concert in the Chicagoland area dedicated to families and individuals affected by Neurofibromatosis (NF).

Coffee for a Cause: The ScullyCoffee4NF Fan Fundraiser

Since 2017, fans of the actress and the TV series The X-Files have organized and implemented a social media-based fundraiser for the NF Network inspired by Gillian Anderson's iconic role as Dana Scully and Anderson's generous spirit.

Advocating for the NF Network at the World’s Largest Workplace Charity Campaign

For over 30 years, the NF Network has been an approved charity through the Combined Federal Campaign, the world's largest and most successful workplace charity campaign.

Neurofibromatosis: The People, an Exhibit by Rachel Mindrup

As an accomplished painter and a mother of a son with NF1, Rachel Mindrup and her subjects are bringing neurofibromatosis into the light, one painting at a time.

Get Ready for Giving Tuesday!

Giving Tuesday is December 3rd. Take a moment to learn about what the NF Network has done since last year's annual appeal and how you can help them be ready for 2020.

Las Vegas’ 9th Annual NF Hope® Concert

An exceptional experience every time! NF Hope Concert hits a new stage and embraces an intimate vibe for the 9th celebration of raising awareness for neurofibromatosis.

Camp New Friends - A Fun, Supportive Environment for Kids with NF

Meet the camp counselors and get ready for Camp New Friends, a summer camp for kids with neurofibromatosis taking place next week.

Stone Lotus Rocks Again at 2nd Annual Docs Rock for NF

On a warm summer night in May, Stone Lotus joined the NF Network to rock out for a great cause at the 2nd Annual Docs Rock for NF concert.

The Final Doodle4NF Auction

After 12 years, this year's Doodle4NF will be the FINAL celebrity doodle auction to raise funds for the NF Network. From presidents to actors, and artists to singers, we thank you for your support and encourage you to bid on the final doodles!

Attend NF Hope Concert Benefit at Metropolis

The NF Hope Concert hits the Windy City once again!

Neurofibromatosis Annual Appeal

Thank you for your support on our year-end appeal! We couldn't do it without you.

10/21/2018 - Las Vegas' NF Hope Concert lit up the Las Vegas strip

LAS VEGAS (KSNV) — A special concert geared to help patients with neurofibromatosis is happening here in the Las Vegas valley.

Special concert to benefit patients suffering from neurofibromatosis

LAS VEGAS (KSNV) — A special concert geared to help patients with neurofibromatosis is happening here in the Las Vegas valley.

NF California Co-Host Ask the Doctor Event

NF1 patients had the opportunity to learn about the City of Hope NF Specialists scope of practice and ask the doctors questions.

NF Walk Celebrates 10 Years

Following it's 10th year, the #NFStrong walk in Kansas City, MO reflects on the past and looks ahead to the future.

Stone Lotus plays at Inaugural Docs Rock for NF concert

On a warm Saturday evening in early June at the Orlando Shakespeare Theater, more than 125 people gathered for the inaugural Docs Rock for NF concert

11th annual Cure NF fundraiser at Buffalo Marathon

The Run4Leah/CureNF Team will participate in its 11th annual Cure NF fundraiser.

NF Central Plains: iNForms

The event drew people from Oklahoma, Missouri and Kansas who wanted to learn.

Concert raises NF awareness, funds

Rock Out to Knock Out NF 2.0, NF North Central’s second annual concert fundraiser, brought in more than $55,000 this past November.

Orlando families host year-end walk

The Neurofibromatosis Network had this year's final #NFStrong Walk for Neurofibromatosis in sunny Orlando, FL.

Symposium helps patients connect with experts

During the 5th International RASopathies Symposium, NF patients and families were able to learn more about their disorder, find out about the latest treatments, ask questions, provide input, and most importantly, collaborate.

Saddle Club raises money for NF research

The Galesburg Boots and Saddle Club raised more than $2,000 for the Neurofibromatosis Network during its Hoof N It for NF event.

NF Hope Concert expands to NYC

When Jeff and Melody Leibow founded the NF Hope Concert in 2011, they dreamed it would be held numerous cities across the country. On May 8 in front of a full house at SubCulture, the first step towards that reality came to fruition with New York City’s inaugural NF Hope Concert.

Symposium leaves attendees hopeful

More than 80 people attended the University of Wisconsin's inaugural NF1 Symposium May 3. 

Portraits and pasta

Members of the NF Central Plains community joined a crowd at the Kansas City Artists’ Coalition gallery for a special exhibit entitled “Portrait of a Disorder: Neurofibromatosis.”

Rare disease day

The 10th annual International Rare Disease Day at the University of Minnesota brought together researchers and patient advocate groups.

North Carolina company rallies around local man

Employees at Advanced Appliance Service, Inc in Winston-Salem, North Carolina, participated in one month of fundraising and awareness activities in support of Chris Denzern.

Boardman walk raises NF awareness

The Neurofibromatosis Network hosted their 4th annual Great Steps 4NF Walk, where participants split up into teams and walked three miles to spread awareness for NF.

KC community raises funds for medical research

Lindsey’s Lucky Stars raised $745 at the 2016 walk in Kansas City, Missouri.

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