On Saturday, August 24, 2019, the UAB Department of Genetics and the Children's Tumor Foundation are hosting the 2019 UAB Neurofibromatosis Symposium and Family Day. We would like to invite you and your family to attend this free event.

The UAB Neurofibromatosis Symposium and Family Day offers patients, families, and caregivers the opportunity to hear from the leaders at UAB and Children's of Alabama providing clinical care for children and adults living with neurofibromatosis. Presentations will include an overview on neurofibromatosis, new care management guidelines, clinical trial opportunities, neuropsychological development in NF, and an ask the experts panel. We will also have a special tribute in memory of Dr. Lane Rutledge, beloved physician to many within the UAB NF Clinic.

Thanks to funding provided by the Children's Tumor Foundation, there is no charge to attend the NF Symposium and Family Day. Breakfast and lunch are provided and childcare and activities for age three and older are also provided. Parking is free in the 5th Avenue Parking Deck at Children's of Alabama.

We have an informational and fun day planned. We hope you make plans to attend. You can view the full agenda online and register by visiting https://2019uabnfsymposium.eventbrite.com/ . Please RSVP by August 19, 2019. If you have accessibility requirements (e.g. captioning translation service), have questions, or prefer to register for the event by phone or email, please contact Renie Moss (email: rpmoss@uab.edu, phone 205-934-9525).

NF Symposium 2019 Agenda

On Saturday, August 24, the UAB Department of Genetics and the Children’s Tumor Foundation are hosting NF Symposium Family Day 2019. The event will take place in the Bradley Lecture Center in the Children’s Harbor Building at Children’s of Alabama. Agenda and restigration link coming soon. Questions? Contact Renie Moss at rpmoss@uab.edu. We always look forward to this invaluable opportunity to provide information, support, and answers to Neurofibromatosis patients and families, especially those who may be facing a new diagnosis.

Save the Date

Sunday, October 28, 2018

The Alabama Children’s Tumor Foundation ishosting the 6th annual Alabama NF Walk event at Tuscaloosa's Riverwalk. We're more than just a walk in the park! NF Walk is a community celebration with delicious food, entertainment, kid crafts and camaraderie among friends, family and co-workers as we gather to celebrate our brave NF Heroes, while raising funds for critical neurofibromatosis (NF) research.


One in three thousand people are living with NF, a genetic disorder that can cause tumors to grow on nerves throughout the body. NF can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and disabling pain. Currently there is no cure nor an effective treatment for NF, but the NF Walk is about the community taking steps together towards one common goal...#EndNF


2017 NF Walk was a lot of fun and we hope to see a great crowd again this year. Here are pictures from last year: https://www.flickr.com/photos/childrenstumorfoundation/albums/72157663249049207


Event Day Schedule:

Registration/Check-in: 12:00PM

Activities: 1:00PM

Walk Begins: 3:00PM 

Questions about registering, donating, or your fundraising page? Check our FAQ here.

For more information, contact Lolita Jerido at ljerido@ctf.org or 646-738-8588. To learn more about our mission, visit www.ctf.org.

For more event details go to: https://join.ctf.org/event/2018-nf-walk-alabama/e172656

Location:

Tuscaloosa Riverwalk
2710 Jack Warner Parkway NE
Tuscaloosa, AL 35404

Photo credit: Mustard Seed Photography

The UAB Neurofibromatosis Clinic is looking to enroll adults with Neurofibromatosis Type 1 (NF1) for a clinical trial targeting cutaneous neurofibromas using the investigational drug called selumetinib. Cutaneous neurofibromas are the benign tumors on or in the skin that are common in adults with NF1. Study participants will take selumetinib by mouth as capsules every 12 hours for 24 cycles (one cycle equals 28 days). This study lasts approximately 2 years, unless significant side-effects develop. You may find more information regarding this clinical trial at www.clinicaltrials.gov study number NCT02839720.

For more study details, a clinical trial fair will take place on Saturday, November 4th from 8:00 a.m. - 12:00 p.m. in the Genetic’s Clinic space in the Kirklin Clinic. There will be an informational group session where the trial details will be provided. Anyone that is interested in the pursuing the trial will complete the consent forms and individually screened in a patient room. The informational session will be free of charge and the evaluation will be billed as standard of care, per protocol standards

For additional study questions, contact:
Ashley Cannon, PhD, MS, CGC (Study Coordinator)
Phone: 205-996-2916
Email: ashleycannon@uabmc.edu

Clinical Trial Information 

Sunday, November 5, 2017

NF CollageThe Alabama Children’s Tumor Foundation is hosting the 5th annual Alabama NF Walk event at Hoover's Veteran's Park. We're more than just a walk in the park! NF Walk is a community celebration with delicious food, entertainment, kid crafts and camaraderie among friends, family and co-workers as we gather to celebrate our brave NF Heroes, while raising funds for critical neurofibromatosis (NF) research.

One in three thousand people are living with NF, a genetic disorder that can cause tumors to grow on nerves throughout the body. NF can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and disabling pain. Currently there is no cure nor an effective treatment for NF, but the NF Walk is about the community taking steps together towards one common goal...#EndNF

2016 NF Walk was a lot of fun and we hope to see a great crowd again this year.    https://www.flickr.com/photos/childrenstumorfoundation/30828624486/in/album-72157674202137520/

Event Day Schedule:

Registration/Check-in:  12:00PM

Activities:  1:00PM

NF Heroes and Champions Ceremony:  2:30PM

Walk Begins: 3:00PM 

Activities to conclude by 4:00PM

Questions about registering, donating, or your fundraising page? Check our FAQ here.

For more information, contact Lolita Jerido at ljerido@ctf.org or 646-738-8588. To learn more about our mission, visit www.ctf.org.

For more event details go to: https://join.ctf.org/events/-/e130144

Location:

Veterans Park
4800 Valleydale Road
Hoover, AL 35216
NF FAMILY DAY 2016The 2016 NF Symposium was a great success! Helpful educational and inspirational presentations were given as well as exciting clinical trial updates and research opportunities. The children had a blast in the Children's Harbor Family Center playing games, creating art, and winning toys. Click here to see photos from the event.
NF Family Symposium 2016 InviteJoin us for this year’s NF Family Day Symposium on August 27th, 2016! Please RSVP here: https://www.eventbrite.com/e/neurofibromatosis-symposium-family-day-2016-tickets-26727671184. Attendance is free. Breakfast, lunch, and childcare will be provided; please RSVP by August 24th so we can plan accordingly. Also, let us know if you have accessibility requirements (e.g. captioning translation service). Contact Ashley Cannon for additional information or questions (email: ashleycannon@uabmc.edu, phone: 205.996.2916). Click hereto view the flyer which includes the schedule, speakers, and location.