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Join us for the 3rd Annual
National Patient and Family Symposium
July 28 - 31, 2011 • Marriott Minneapolis • Minnesota

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.   

Check out the incredible array of agenda topics dedicated to helping improve care for individuals living with NF, educate about the latest research findings, and provide support to those living with NF and their families.  Financial assistance is available.

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 Shoshanna Goldin, 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. Moertel M.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.Plotkin M.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. Viskochil M.D., Ph.D. - University of Utah - Click here to see video of Dr. Viskochil
    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)

Register Now!

DOWNLOAD REGISTRATION FORM

If you are experiencing financial hardship and are unable to pay the registration fees for the Forum please contact John Heropoulos by email at This e-mail address is being protected from spambots. You need JavaScript enabled to view it or by phone at 617-456-4706.
 

 2010 NF Forum Feedback

“Thank you Children’s Tumor Foundation for a fantastic event to learn more about NF developments and to meet other families going through similar challenges from this desease.” – Brendon Lynch, WA

 “Terrific conference. Great networking, great show of leadership, energy and wonderful ideas.” – Joyce Marks, CA

“Perfect for me.” – Brian Lease, MN

“Thank you so much for putting all of this together! Our lives have been changed because of our son’s NF and the information and contacts we’ve received through the Forum have had an enormous, positive impact! Thank you!” - Georgette Helpingstine, IN   

“I had a great experience with other families going through the same struggles with the disorder. I will come again and hope to bring my 14-year-old.” - Mark Nowalk, CA

 “Looking forward to the next NF Forum and spreading awareness to provide others with resources that I did not have.” - Lori and Erik Bjorkquist, NV

“Thank you! Thank you! Thank you!” - Gwendolyn Pennywell, AL

New for 2011!!!
Health Fair for Individuals with NF2 or Schwannomatosis

The Children's Tumor Foundation is partnering with Mayo Clinic to offer a "Health Fair" for individuals with NF2 or Schwannomatosis on July 29, 2011 as part of the NF Forum. The "Health Fair" is designed to provide an opportunity for a select group of individuals with NF2 or Schwannomatosis to be informally evaluated by an expert panel consisting of medical professionals (surgeons, neurologists, geneticists, ENTs, and others) that have special expertise with NF2/Schwannomatosis. Evaluation by experts is at no charge to patients. Read more

 What better way to close out the NF Forum weekend than an NF Walk to help raise awareness at Minnehaha Park?

Minnehaha Park overlooks the historic Mississippi River and is one of Minneapolis’ oldest and most popular parks. The 193-acre park features a waterfall, limestone bluffs and river overlooks. 

Raise $600 or more for the Minneapolis NF Walk on Sunday, July 31 and  you will receive a refund of one (1) NF Forum registration fee.

PARTICIPANT INCENTIVES

Level 5: $2000 - $2999
              Featured profile of your team on Children’s Tumor Foundation national website
              Children’s Tumor Foundation tote bag (4), t-shirt (4) and wristband
              THREE NF FORUM registration fee waived

Level 4: $1200 - 1999
              Receive tote bag(2), t-shirt(2), wristband(2)
              TWO NF Forum registration fee waived

Level 3: $600
              Receive a fund of ONE (1) NF Forum registration fee

Level 2: $500
              Receive a CTF travel bag!

Level 1: $100
              Receive a free t-shirt!

Register to attend today!