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NF Forum Agenda Announced!

By July 5, 2011December 5th, 2023Awareness, NF Summit

The Forum is a great place for individuals and families from across the country to come together for an incredible weekend of education, support and fun!  This year we’re excited to offer breakout sessions for our popular “NF Moms Rock!” and “NF Dads Rock!” groups.  We’ll have plenty of activities everyone will enjoy.  From our Children’s Camp to our Teen Adventure to the Young Professionals Networking event, there will be something for everyone.

Financial assistance is available.

Click here to reigister.

Thursday, July 28, 2011

Pre Conference Events
9:00am- 12:00pm         NF Endurance Team Captain Summit
1:30pm-5:00pm            NF Endurance Team Activity
6:00pm-8:00pm            Chapter Council Dinner

Friday, July 29th, 2011

Pre Conference Events
7:30am – 4:30pm           Chapter Council Meeting
9:00am – 4:30pm           Optional Day Activities
Valley Fair Amusement Park, Science Museum, Target Center, Minnesota Zoo,
Water Park of America, Wild Life Refuge, Mall of America

NF2 and Schwannomatosis Health Fair
11:00am- 5:00pm          NF2/ Schwannomatosis Patient Evaluation (Location: Mayo Clinic Rochester)
11:00am-1:00pm           Transportation from Marriott Minneapolis to Rochester (pick up at 11:00am)
Lunch and  Tour of Mayo Clinic Rochester (open to all NF Forum attendees)
1:00pm-4:00pm             Health Fair for Individuals with NF2 or Schwannomatosis
4:00pm-5:00pm             Question and Answer Panel: NF2/Schwannomatosis

NF Forum Opens

5:30pm – 8:00pm      Welcome Reception & Registration:“A Social Time to Connect Reconnect”
6:30pm                        Opening Session

Keynote Address:  “Adversity is a Gift:  Five Reasons People Survive and Thrive”
Mike Max, Sports Reporter for WCCO TV in Minneapolis

Special Recognition:    Three young people with NF who were honored at the 2011 Prudential Spirit of Community Awards: High School National Honoree Jeffrey Hanson and State Honorees: Zachary Odegard, Oregon and ShoshannaGoldin, Pennsylvania.

Saturday, July 30, 2011

7:30am – 11:00am        Exhibits/ Kids and Teen Venture/NF Forum Registration
7:30am – 8:20am          Breakfast
7:30am- 5:00pm            Kids and Teen Adventure
8:30am- 8:40am            Against All Odds
George Orfanakos – President, Children’s Tumor Foundation
8:40am-9:10am            “Entering the Market Place with Open Hands:  Living an Inspired Life”
Sondra E. Solomon, Ph.D. -University of Vermont
9:10am – 9:30am        Speak up! Government Advocacy
Aubrey Rothrock, Partner and Nicole Silver, Associate, Patton Boggs LLP
9:30am-9:45am            BREAK

Concurrent Sessions

9:45am-11:45pm         NF2 WHAT YOU NEED TO KNOW
Natural History NF2 – Gareth Evans M.D. –  University of Manchester/St. Mary’s Hospital – Click here to see video of Dr. Evans at the NF Conference.
Natural History Schwannomatosis – Chris L. MoertelM.D. – University of Minnesota
Radiation vs. surgery in NF2 – Gareth  Evans M.D.-  University of Manchester/St. Mary’s Hospital
Updated Results On Hearing Improvement After Bevacizumab- Scott R.PlotkinM.D. Ph.D. – Massachusetts General Hospital – Click here to see video of Dr. Plotkin.
Complementary Medicine – Larry R. Bergstrom.M.D. – Mayo Clinic

9:45am-11:45pm         NF1 WHAT YOU NEED TO KNOW
Clinical Trials: An update on NF1 trials- David H. ViskochilM.D., Ph.D. – University of Utah- Click here to see video of Dr. Viskochil discuss his history of researching and improving care for those who live with NF.
What’s an Optic Glioma- Chris L. Moertel  M.D. – University of Minnesota
Complementary and Alternative Medicine- Larry R. Bergstrom.M.D. – Mayo Clinic
NF1 and Your Skin: itching, spots and bumps– TBA

11:45am – 12:00pm       BREAK

12:00pm – 12:45pm       Breakout Sessions: Getting The Word Out – Many Voices One Message!
The Ask: Approaching family, friends, and corporations to support CTF
Special Events: How to take your fundraising idea, organize it, plan it and make it become a reality
Social Media: How to spread the news of NF & CTF through social media

1:00pm –1:45pm            LUNCH and a Special Video: Cris Crossing the Nation with Inspiration

1:45pm- 3:15pm          NF2 WHAT YOU NEED TO KNOW
Auditory Brainstem Implantation (ABI) for the NF2 Patient– Brian Neff, M.D. – Mayo Clinic
Hearing Preservation in NF2– Sam Levine, M.D – University of Minnesota
Peripheral Nerve Surgery – Robert J. Spinner M.D. – Mayo Clinic
Pain Management in NF2 & Schwannomatosis – Tim J. Lamer, M.D. – Mayo Clinic

1:45pm-3:15pm           NF1 LIVING AND LEARNING
The Psychological and Educational Needs and Services of Children Living with NF
David Salsberg, Psy.D. DABPS – Rusk Institute, NYU Medical Center
Laura Tagliareni, Ph.D. – Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders
NYU Langone      Medical Center

3:15pm-3:30pm             BREAK
3:30pm-4:00pm             Chapter Council “Sharing, Learning and Celebrating”

4:00pm-5:30pm           NF1 & NF2: UNITING TO LEARN MORE
Expert panel: Can We Talk? Conversation about tools for good living, managing stress, anxiety and uncertainty in NF
5:30pm                          Wrap Up and Directions for Walking with Nature
7:00pm-9:00pm           Dinner, Partying and Picnicking

Sunday, July 31, 2011

7:45am                         Walk with Nature and Picnic
NF Walk: Departure from Marriott to Minnehaha Park (transportation provided)
8:00am- 8:45am         Breakfast and Registration – Minnehaha Park
9:00am                         Walk Begins/Picnic following walk
(transportation from Minnehaha park to Marriott)