We’re grateful to Penny’s Flight Foundation and Kate Doerge for featuring our lab's research as part of their mission to raise awareness and critical funds to #ENDNF. This clip is just a glimpse! Go watch the full video and learn more about their amazing work on the Penny’s Flight YouTube channel.
Hot off the press in the Journal of Pain. Bringing my work full circle with #gsmtx4 #schwannomatosis #ENDNF
DOI: 10.1016/j.jpain.2025.105597 External Link
#JAACAP #metaanalysis finds children with #neurofibromatosis type 1 have more severe #ADHD symptoms than the general population. #FSUCOM #raredisease #EndNF
https://twp.ai/4inrT6
Excited to hear about future options for patients with NF2-Schwannomatosis from my colleague Dr. Jeremie Vitte. #NFConference #endNF #makeNFvisible
Enjoying the start of second day at #NFSummit working to further Neurofibromatosis and Schwannomatosis research supporting patients and their families.
#EndNF #Neurofibromatosis #Schwannomatosis
Comment if you are here.
May 17th is World NF Awareness Day. This date was chosen because the gene that causes NF1 (the most common form of NF) is located on Chromosome 17.
#NFawareness #EndNF
Once formally diagnosed with NF1, regular screenings for tumor growth and other symptoms can help to catch problems early and make interventions more effective.
#NFAwareness #EndNF 3/3
Before we even began trying to conceive, I started taking pre-natal vitamins and avoiding foods, drinks, and chemicals that could harm a developing baby. My efforts likely helped prevent other problems, but NF1 was encoded in my son's DNA from the very beginning.
#NFawareness #EndNF
A friend of ours passed away suddenly last year when an NF tumor in her chest created too much pressure on her heart. Other friends are losing their vision, hearing, and mobility due to NF tumors.
Federal funding for NF research has been eliminated for at least the next year.
#NFawareness #EndNF
May is Neurofibromatosis (NF) Awareness Month
Neurofibromatosis, called "NF" for short, is a long word that describes a collection of genetic conditions with overlapping symptoms. The name refers to tumors called "neurofibromas" that can grow on nerves throughout the body.
#NFAwareness #ENDNF
Today, NF orgs joined forces to protect research and drive progress for all affected by NF. We're working together to ensure NF is known and funded.
The federal funding cuts were tough. But we are more determined than ever. You’ll be hearing more. This is only the beginning.
#UnitedForNF #EndNF
#JAACAP #metaanalysis finds children with #neurofibromatosis type 1 have more severe #ADHD symptoms than the general population. #FSUCOM #raredisease #EndNF
doi.org/10.1016/j.ja...
Alright I can't have any more back surgeries because the likelihood of me becoming paralyzed is way too high. More like 100% The sooner I get back on chemotherapy the sooner the process of shrinking my tumors can start. I need to advocate for my health condition. #EndNF
Join us February 25th to learn about current research on how best to treat pain for people with non-NF2 related schwannomatosis.
www.nfmidwest.org/event/clinic...
#endnf #schwannomatosis
Today I'm running (more like walking) in my 11th Cupid's Undie Run to raise money to #EndNF (neurofibromatosis), which my nephew has.
The cold air and gray skies should be good for this migraine.
I run quite a bit, but am fundraising for the first time, as part of the Children’s Tumor Foundation NF Endurance Team! Please help me hit my London Marathon $10k goal to support #neurofibromatosis research. Donations or amplifications will help #EndNF
join.ctf.org/fundraiser/5...
NF Midwest is happy to be on Bluesky to interact with our community to learn from each other!
This poster has two adult children and a husband with NF1.
Please share your connection to neurofibromatosis (NF, NF2-SWN or other SWN).
#endnf #neurofibromatosis.
It's less than 6 weeks to Cupid's and time to start fundieraising. Since I started running in my underwear in 2014, clinical trials more than tripled from 21 to 68 for NF. Fifty state challenge once again on the table and 10k fundraised for a Tutu. Link in the comments. #ImWithCupid #EndNF
Thank you for working to #endnf 🫶🏻
By shedding light on the biology, clinical strategies, and cutting-edge treatments for these #NF tumor spectra, this collection aims to enhance understanding and advance the quest to #EndNF. Deadline: 11/30/25, Website: tiny.cc/NF1
One of my very best friends is participating in the Cupid’s Undie Run this year to raise money for the Children’s Tumor Foundation.
If you’re able, please consider donating. Let’s #endNF 💖
my.cupids.org/fundraiser/5...
My 22 year old son #endnf
If you’d like to donate this #givingtuesday you can do so at: my.cupids.org/specialk2025 help me #EndNF
#EndNF
Neurofibromatosis aka NF is the most common genetic condition caused by a single gene mutation. Feel free to ask me anything.
