Neurofibromatosis Network

As we approach a day of thanks, our hearts are filled with gratitude as we reflect on all the support, volunteers, and talent that have come together to help us raise funds to continue our mission. A single collage cannot capture all the people we are thankful for—this includes you, the NF Community. You are the reason we work hard to build a community and raise awareness. #Thankful #gratitude #neurofibromatosis #NFCommunity

Dasher wanted us to remind you that we are just one week away from Giving Tuesday! He plays a crucial role in helping advocate for neurofibromatosis (NF) each year on Capitol Hill. The NF Network Advocacy Program is the leading national advocacy initiative for neurofibromatosis, dedicated to securing federal funding for NF research. This program unites several NF patient advocacy organizations to educate Congress about the importance of funding for NF research. To date, the program has successfully raised over $400 million for NF research. Please consider supporting us with your donations this upcoming Giving Tuesday to help support our mission! https://lnkd.in/gPXPmXNj #NFnetwork #givingback #GivingTuesday #neurofibromatosis #advocacy

As we prepare for Thanksgiving, we're curious about your favorite dessert. Are you all about apple pie, or are you pumped up for pumpkin pie? #thanksgiving

CHICAGO WE ARE BACK! Chicago's 5th Annual NF Hope Concert is Sunday, December 8, 2024 at 3:00 PM at our new home, the Madison Street Theater in Oak Park, IL. The spectacular afternoon of entertainment will raise awareness and financial support for the Neurofibromatosis Network. This year, we are presenting our very first holiday NF Hope Concert. To bring in the cheer, we have invited an incredible cast to take the stage. Meet the cast... https://lnkd.in/g-hDJYX4 #neurofibromatosis #NFHopeConcert #benefitconcert #oakparkil

We are just two weeks away from Giving Tuesday! As we prepare for this important day of giving, we want to introduce you to Dasher, a service dog and companion to Leah Manth, a member of the Manth family. Dasher plays a crucial role in helping Leah advocate for neurofibromatosis (NF) each year on Capitol Hill. The NF Network Advocacy Program is the leading national advocacy initiative for neurofibromatosis, dedicated to securing federal funding for NF research. This program unites several NF patient advocacy organizations to educate Congress about the importance of funding for NF research. To date, our program has successfully raised over $400 million for NF research. Please consider supporting us with your donations this Giving Tuesday to help support our mission! https://lnkd.in/gPXPmXNj #NFnetwork #givingback #GivingTuesday #neurofibromatosis #advocacy

Thank you Sketch NF for this insightful post! Learning disabilities can affect the lives of NF patients in various ways. Scroll through to learn more about these challenges and explore the types of assistance available to support them! #nf #nf1 #nf2 #endnf #neurofibromatosis #neurofibromatosistype1 #endnf #endnf2 #schwannomatosis #nfnetwork

Hey Orlando! We are thrilled to invite you to a captivating and educational event this weekend! We're not just showcasing our impressive lineup, but we are also excited to introduce a remarkable new speaker: Erin Moore, MM, MT-BC. Join us for her insightful presentation, “Music Therapy: A Creative Approach to Whole-Person Care in the Medical Setting.” A bit about Erin: My name is Erin Moore, and I serve as the inpatient pediatric music therapist at Advent Health for Children. Originally from Long Island, NY, I made the move to Florida three years ago. I obtained my bachelor’s degree in music therapy from Marywood University and my master’s degree from Florida State University. In my role at Advent Health for four months, I have found my dream job. I am passionate about supporting patients and their families during hospital stays and strive to create uplifting experiences for them. This is an opportunity you won’t want to miss! Sign up here: https://bit.ly/4exGVyK We look forward to seeing you there! #neurofibromatosis #NF1 #arttherapy #EducationalMeeting #orlando #adventhealthorlando

Chicagoland’s top local talent once again is coming together under one roof in the fight against Neurofibromatosis (NF) at Chicago’s 5th annual NF Hope? Concert, a benefit set to take place 3 p.m. Sunday, December 8, 2024. Proceeds from the event will benefit Neurofibromatosis Network, an organization serving families and individuals suffering with the neurological disorder Neurofibromatosis (NF). This year, the concert brings together Chicago’s best, THE FOUR C NOTES (the premiere Frankie Valli and the Four Seasons tribute) and JESSY SCHRAM (star of Chicago Med, Once Upon A Time, Nashville). The event will be hosted by DANIEL TATAR (This is Us, Grey's Anatomy and The Chi) and JEFF LEIBOW (NF Hope Concert co-founder and former star of the Broadway hit musical, JERSEY BOYS). For more information, visit https://lnkd.in/gD88CY4N See you there! #nfhope #neurofibromatosis #benefitconcert #connectingnf #chicago

Join us for an inspiring and free educational event in Orlando this weekend! We're thrilled to present a "Munch and Learn" where you'll discover the transformative power of creativity and healing. You'll also hear from your local NF team and have the chance to listen to Samantha Blain from Alexion, who will discuss NF1 and important next steps for parents. As a special highlight, everyone will get to create a unique paper flower that symbolizes your beautiful individuality! Don’t miss out on this enriching experience on November 17 from 2-4 PM. Register now to secure your spot: https://bit.ly/4exGVyK #neurofibromatosis #NF1 #arttherapy #EducationalMeeting #orlando #adventhealthorlando

Thanks to The Bar Method Tampa and Melanie Leach, we just received a generous donation for our #NFStrong Orlando Walk! Because of everyone's generosity, we are able to offer things like support and educational programming. Next week we will be in Orlando doing just that! Come by for an afternoon snack and some great information! Sign up here... https://bit.ly/4exGVyK #neurofibromatosis #orlando #EducationalMeeting