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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 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 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)

Register Now!

The following was written by CTF Chief Scientific Officer Dr. Kim Hunter-Schaedle:

Earlier this week the Children’s Tumor Foundation hosted a workshop/think tank convening 25 international researchers and clinicians to review recent progress in schwannomatosis research and clinical management, and set priorities to advance future progress. The meeting was planned and chaired by Dr. Scott Plotkin (Harvard/MGH), Dr. Marco Giovannini (House Research Institute) and Dr. Gareth Evans (University of Manchester) and included updates on genetics, cell biology, surgical intervention and the potential of advancing to clinical drug therapies for schwannomatosis, the rarest form of neurofibromatosis affecting an estimated 1:40,000 persons.

In part through CTF funded projects, significant progress has been made since the gene SMARCB1 (also known as INI-1) was in 2007 identified as a causal factor in inherited schwannomatosis.  Researchers have further unraveled the genetics of schwannomatosis, and learned that while SMARCB1 is important in inherited cases of schwannomatosis, this disease onset also involves the NF2 gene; and that in spontaneous (non-inherited) cases, SMARCB1 is not necessarily involved but that there are as yet unidentified genes involved.   The first mouse models of schwannomatosis tumors and pain are now developed and being used to study tumor and pain biology and test drug therapies.  And an international schwannomatosis database is established to collect information on schwannomatosis patients worldwide and facilitate future research projects and clinical trials.

At the workshop a series of priorities for the future was identified. There is a need to identify the additional genes and genetic modifiers that may be involved in interacting with the SMARCB1 or NF2 genes to lead to schwannomatosis. There is a need to develop more refined mouse models that represent schwannomatosis seen in humans as closely as possible, so that these can be used to study biology and tumor growth/pain and to test candidate drug treatments.  The biology and mechanisms of pain - which is such a central and poorly understood element of schwannomatosis - need to be unraveled and understood.  In terms of candidate drug therapies, it is rational to look at those drugs that are showing promise in mouse models of NF2 tumors, and see if they have impact on the tumors in mouse models of schwannomatosis.

Very importantly, now that we have a patient database, there is a need to plan clinical research studies to better understand schwannomatosis, such as understanding how individual patients condition has progressed following surgery, especially multiple surgeries; identifying whether there are blood-based or other biomarkers of schwannomatosis; and developing a pain survey for patients to better define the type and range of pain seen in schwannomatosis.; and looking ahead, prospective studies monitoring patients from time of diagnosis ongoing such as by whole body MRI. It is considered to be premature to consider clinical trials for schwannomatosis as we don’t have sufficient knowledge to do this; but that for patients in states of extreme crisis, there is the potential to begin testing drugs such as bevacizumab (Avastin) that have shown promise in NF2 patients.

Finally the clinical diagnostic guidelines for schwannomatosis were published in 2005 and the group reviewed these and made some recommendations to update these based on new genetics and clinical knowledge.

As a follow up to this workshop CTF will be spearheading the publication of a meeting report summarizing the latest update and recommendations for schwannomatosis. Also – in the next month – CTF will be releasing a Request for Applications to fund further schwannomatosis research.  After this great meeting we look forward to seeing further research progress.

Can you hear the silence?

I can. Always. I’m deafened since I was 17 due to Neurofibromatosis Type 2 and since then live in complete silence. What proved at first an enormous strike in life, I have now found ways to cope with. The first step was acceptance of this fate. Not that I have swept it aside and carry on living but rather I've found ways of lessening the pain which deafness brings. At first, there was the language part. If you want to enjoy your time with somebody else, you need a shared language to achieve this. For me and my family this meant learning sign language and I, over time, taught this to my closest friends, so they can find a way back to my real self. Of course this is a small world, but it’s better than being completely isolated, because no doubt this is what happens after ‘the strike’. What you thought to be friends, move away from you except very few close ones if you’re lucky. You lose the grip of the world you belong to and with it your identity until only your family is left. NF2 is so different in every individual though and many will have different perceptions and experience, but this is how I experienced it after becoming deaf.

So, suddenly without being part of either world; Nor the hearing one, neither the one of the deaf (from birth) community, I seemed and still seem a bit lost when it comes to where I belong. I would say I’m from in-between the two worlds and that sadly is quite a small margin. In public I find myself being avoided, it is almost impossible to meet new people. They all avoid me, but when I take that thought further I realise it’s not me directly, but rather communication with me. So, I keep telling myself it is their loss, I like myself. Of course though, it is mine, too. Due to the failing smalltalk (who thought this would be important?) I feel shut out from personalities, from information, from other human-beings in general. I always have to work hard and get to know many people, because there might be just be someone who will not follow this general pattern. After all I have interesting things to tell and in some way or another I can slip something maybe interesting about myself (not my disease etc.) in to provoke further interest. So, actually it is an on-going fight about re-integrating myself back into society or maybe it is just a straw of my past and true identity which I do not want let go.

Another basic of life, along with health, communication and a working social environment is that of the family. I do not know what I would do without them, just like anybody who hears says the same for his ears. Although they support me in any way possible, despite their helplessness, I know I would move on without them, because I must, because I have no other choice than trying making the best of it. Of course we all felt completely lost when we suddenly had to communicate by pen and paper after the first surgery. But after a few years we all began to understand the real meaning of the saying ‘time heals all wounds’. It is really hard to keep your spirits up if the society’s behaviour just pulls them down again. NF2 has really redefined true family love within mine and in some way or another I am even grateful for this fate. It enabled me to meet many nice people, to make new experiences, to learn what life is worth. I had one of the best childhood’s you could wish for and that can never be taken away. I have taken these words as my new motto: ‘Don’t cry because it’s over. Smile because it happened.’

I am a language student at Southampton University, which has, having grown up in Germany, always been my dream (before deafening). I thought to myself ‘why should the deafness stop me?’, so I just continued with it and it works well. Having me as a student means extra work for the tutors etc. and of course for myself, but I’m up for it. There is lots of support available, all you have to do is raise your hand. Generally I enjoy challenges and that’s what keeps me going. I see NF2 not as a disability itself (the feeling of being disadvantaged is created by society) but as a challenge. And I won’t give up before it is resolved. Many people complain about not knowing to do with their lives, having no essence. For me NF2 is a sense of life. It is certainly not boring and made me what I am today. And when I look around me, without being arrogant I believe I am a better person than some, who are just not aware of the value of life, who just lead the same boring life as always and being somewhat superficial. In Shantaram, the best book I have ever read, a sentence goes ‘If you can’t do anything about something, you have to accept that things could be worse and that you are completely helpless in the face of it’ but Voltaire said ‘the longer we dwell on misfortunes, the greater is their power to harm us.'

So yeah, guess I gotta keep moving.