Celebrating 41 Years

NF Midwest Symposium & iNFo Fair Highlights Part 2

NF Midwest’s 27th Symposium & iNFo Fair held November 11 had so much information that there’s no way to share it all and what we can share, we are sharing in two-parts. You can find part one here.

Due to the sensitivity of the discussions, privacy issues, and/or to protect unpublished research, it’s frequently impossible to share slides or recordings, but we are working to see what we can share.

If there are specific questions you are looking for answers to please join the new NF Community on the patient platform Genefo and post your questions there. Go to www.tinyurl.com/NFHello to sign up. It’s a great place to post your questions.

For now, we just wanted to share some of the important that came out of the event. Here’s part two of our two-part overview!

Here’s Part Two of Our Update:

Dr. Frank Buono discussed his study on pain in NF1 and covered A LOT of ground. His study showed that chronic pain is prevalent in NF1 and often more debilitating than it is in other disorders and that chronic pain can affect daily living activities including. sleep, daily chores or a job.  It was surprising how few respondents try other therapies such as yoga, mindfulness, acupuncture, acupressure, and more as these can help. Dr. Buono encouraged people to be big advocates for themselves and to find doctors that understand NF and to make sure that they know you! Individuals with NF need to educate themselves, understand their disorder, and be comfortable with their disorder and talking about it.

Dr. Jason Marker, a family practitioner, gave us some great information on how to work with a doctor that doesn’t know a lot about NF.  Like all of the presentations, this one really needed to be seen or heard as it had a lot of helpful information. The main points were…

  1. Having a good, open relationship with your primary care doctor is key.
  2. Remember that not everything is related to NF and that your primary care doc has to focus on your overall health.
  3. Try to share information about NF (such as handouts from NF Midwest) with your primary care doctor AHEAD of your visit.
  4. Try to share your questions ahead of time.
  5. If you have an NF specialist, have your NF specialist’s business card to give to your primary care doctor.
  6. Sometimes the best thing you can do is to get a new primary care doctor.

Dr. Nicole Ullrich, MD., Ph.D., is a pediatric neurologist at Boston Children’s Hospital and Director of Clinical Trials in the NF Program there. Dr. Ullrich gave us an update of the data culled from several clinical trials addressing NF tumors, specifically vestibular schwannomas, including the Avastin trial, which has shown to have some positive effects on stabilization of tumors and preservation of hearing, as measured volumetrically and in word discrimination tests.  Dr. Ullrich illuminated us about the difference between Phase I and Phase II trials and described how dosage of Avastin has changed since the onset of Phase I.  She also spoke about some future goals in trial design, one of which includes distinguishing between trials focusing upon a pediatric population and those focused upon an adult population, given the developmental changes of children.

Dr. Edna Romero from Lurie Children’s Hospital spoke about coping with a chronic illness. A few of the points of her presentation included the information that children with NF1 have been reported to internalize symptoms and peer difficulties more than other children, and that there are higher rates of depression and anxiety among people with NF.  She stressed the importance of developing “grit”. Some ways to do this include finding a purpose, being hopeful, and joining a “gritty” support group. She also went over problem-solving skills; communicating effectively; relaxation and mindfulness; and much more.

School Psychologist and NF mom, Dena Hasselberg, gave us many tips on how to be the best educational advocate for your child at their school.  First, ALWAYS remember your goal –  which is to ensure your child has access to the best education possible so they can be productive members of our society.  Educate the school staff on NF. NF Midwest’s  article “NF1 Information for Teachers” may help. A paper trail is key, so write a follow-up letter to recap anything discussed in a meeting or conversation you have with a teacher. Know the law, a great resource is the book “Wrights Law: From Emotions to Advocacy” available on Amazon. Though it can be difficult Dena urged parents to not show their emotions or anger and when frustrated, but to vent to family and friends instead. She stressed that through it all, always remember your goal!

Read Part One Sign Up for the new NF Community

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