NF Northeast

Dedicated to finding a cure. Creating a community of hope & support for patients, families, and all those touched by NF.

[NF Northeast @NFincNE]

Such a pleasure to speak with Rep. Fields' office. Thank you for taking the time to learn more about neurofibromatosis. #NFadvocacy, #RepCleoFields

[NF Northeast @NFincNE]

It was very nice to meet with Shelby from Rep. Troy Carter's office. Thank you for taking the time to meet with NF Northeast. #NFadvocacy, #RepTroyCarter

[NF Northeast @NFincNE]

Thank you, Ron Anderson, from Senator Kennedy's office (LA) for taking the time to meet with NF Northeast. And yes, that is the resident gator, Alphonse, with Sharon! She wasn't scared at all! #SenKennedy, #LouisianaSenator

[NF Northeast @NFincNE]

It was a pleasure to meet with Ron Anderson in Senator Cassidy's office. Thank you for taking the time to meet with NF Northeast. #SenBillCassidy, #BillCassidy

[NF Northeast @NFincNE]

So happy to meet with Grace in Congressman Ezell's office. #NFAdvocacy, #Advocacymatters, #RepEzell, #MikeEzell, #MS04

[Sharon Klein @00weezie123]

So happy to meet Grace in Congressman Ezell’s MS office!

[NF Northeast @NFincNE]

Great meeting with Blaze from Rep. Higgins (LA03) office. Thanks for taking the time to meet with NF Northeast. #RepHiggins, #LA03, #ClayHiggins

[SpringWorks @SpringWorksTx]

We’re proud to be a sponsor of @NFincNE’s Steps2Cure NF Hartford walk. To learn more, visit: https://t.co/z303JIBMxl

[Vanessa L. Merker, PhD @vlmerker]

Calling all #Neurofibromatosis and #Schwannomatosis families in the Boston area! Register for our annual symposium on Saturday, April 6th! @NFincNE @ChildrensTumor @MGHNeuroOnc @BostonChildrens https://t.co/oHZ3J6nsIQ

[NF Northeast @NFincNE]

This International Women's Day, NF Northeast honors all women affected by neurofibromatosis:

To the patients, sisters, nurses, mothers, caretakers, advocates, doctors, grandmothers, educators, lawmakers, researchers, and more 💙 We see you and we appreciate you.

[NF Northeast @NFincNE]

Wishing you & yours a warm and joyous holiday season ����❄️ Sending our best wishes for a bright new year from all of us at NF Northeast!

[NF Northeast @NFincNE]

Such a special way to support NF Northeast: shopping! We will be in store on Saturday, November 18, 2023. Drop for a visit and 20% of sales will be donated to NF Northeast. #kendrascott #Kendragivesback

[NF Northeast @NFincNE]

We're so excited to welcome Dr. David Miller and Katherine Piculell from @BostonChildrens to introduce the NF1 Tumor Early Detection (TED) Study—a study focused on early MPNST detection for NF1 patients.

Register for this session at 12pm on 9/19 here: https://t.co/4MY4929LJu

[NF Northeast @NFincNE]

We loved having you Emily!! Thanks for shining a light on neurofibromatosis and supporting those who live with NF each and every day 💙 Your support is invaluable!

[Emily Maher @EmilyMaherTV]

Had an absolute blast at the @NFincNE Coast to the Cure ride in Gloucester! More than 100 cyclists took to the road to raise money for neurofibromatosis research!

[NF Northeast @NFincNE]

Join @BridgelabU on Saturday at 1pm EST for a FREE virtual webinar on mental health challenges and resources for children with RASopathies—which includes neurofibromatosis!

If you're the parent or caretaker of a child with NF, register here: https://t.co/RrslEWfzjn

[BRIDGE Lab - Stanford University @BridgelabU]

Join us for a virtual webinar on mental health challenges and resources for children with RASopathies.
August 26th at 10AM PT / 12PM CT / 1PM ET.
This FREE event will be held on Zoom. Register now: https://t.co/MHLkCV6cNB

[NF Northeast @NFincNE]

See you at Coast to the Cure 2023 - the annual cycling fundraiser for NF Northeast in the beautiful city of Gloucester! 🚴💙🌊

For more details: https://t.co/UNr318B8UZ

[@WCVB_Publicity @WCVB_Publicity]

Join @EmilyMaherTV on Saturday, September 9th for the @NFincNE 12th Annual Coast to the Cure cycling fundraiser and ride to support patients and families affected by neurofibromatosis (NF) and its allied disorders. For more information go to https://t.co/7KBfn6Y8Cv

[NF Northeast @NFincNE]

‼�� VOLUNTEERS NEEDED ‼️

If you're available Sat 9/9 to help out with our annual Coast to the Cure cycling fundraiser, let us know!

AM/PM shifts available - Help us make a difference in the lives of those with NF!

Email [email protected] to volunteer or for more info 🚴

[Vanessa L. Merker, PhD @vlmerker]

Interested in clinical and health services research in rare neurological diseases? Apply to work with us now at the #Neurofibromatosis Clinic at @MGHNeuroOnc in Boston, MA! Three roles open for applications now (a thread):

[NF Northeast @NFincNE]

What an incredible spotlight on both #neurofibromatosis and NF hero Reggie Bibbs 💙

We're all in this fight against NF together - huge thanks to @kevin_nealon for his support & dedication to raising awareness!!

[Kevin Nealon @kevin_nealon]

This is my friend Reggie Bibbs. Reggie is the kindest and most loving person I have ever met. His face is disfigured from a rare genetic condition called ‘Neurofibromatosis.’

After many years of never leaving his bedroom, out of shame and embarrassment, Reggie finally summoned enough courage to face his fears and raise awareness of this disorder.

He has incurred tremendous challenges over the past years, including the loss of his mother and the foreclosure of their family home. Despite these hardships, Reggie has maintained an extraordinary spirit and has always believed that something better was coming.

My humble request is for you to open your heart and consider supporting Reggie in raising funds through a GoFundMe account. These funds would be to cover his monthly rent, utilities, and essential expenses for the next five years.

Any contribution, no matter how small, will make such a meaningful difference in Reggie's life and help him reach his $133,000.00 goal.. Thank you so much.
https://t.co/VZrfiM6wG7

[NF Northeast @NFincNE]

Celebrate #GlobalRunningDay with us! Join @NFNortheast and run for a cause. We still have bibs available for two amazing races — @FalmouthRR in Woods Hole, MA and @MaineMarathon in Portland, ME — so sign up now and let's run towards a cure for NF 🏅🏃‍♂️💙