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Connecting the Unconnected

By February 16, 2021January 17th, 2024Awareness

A message about connecting the unconnected, from Children’s Tumor Foundation President Annette Bakker:

This past year has taught us that being connected is more important than ever. While the pandemic kept us physically apart, our shared connections have driven new possibilities in scientific progress, as the brightest minds have come together to develop vaccines and treatments in order to save lives.

That same spirit of collaboration has been instrumental to tremendous scientific progress in NF. Over the past year alone, the NF community has celebrated:

  • the first-ever FDA approved drug for NF (this first one is specifically for inoperable NF1 plexiform neurofibromas), showing that effective treatments for NF are possible
  • the first-ever platform trial for NF2, currently testing a treatment that came out of CTF’s Synodos team science effort
  • the first-ever clinical trial for schwannomatosis
  • the first-ever clinical trial for a topical treatment (gel on the skin) for cutaneous neurofibromas

We are revolutionizing how treatments for all forms of NF are to be found, and this progress is possible because the Children’s Tumor Foundation is committed to ‘connecting the unconnected.’ Our approach brings together all stakeholders that are committed to ending NF to make sure that treatments are developed as quickly as possible – because our patients deserve a life uninterrupted by NF.

This idea – to connect the unconnected – is so powerful that everyone should know about it. We’ve put together a brief video on our CTF Connects strategy, which I encourage you to watch and share. Please click below:

Looking ahead, we know this approach will serve the NF community well. We are committed to:

  • investing in basic, translational, and clinical research so as to expand our understanding of NF, which will lead to new treatments
  • developing preclinical models to test new treatment options and grow the number of clinical trials
  • discovering and developing biomarkers that will ensure that patients receive the right treatment options (no more ‘watch and wait’)
  • sustaining a diversified investment approach (including innovations such as biologics and gene therapy), fueling investigations into the best treatment options for both today and tomorrow
  • with NF patients and caregivers as partners, we will always keep them at the heart of everything we do, connecting the global NF community – together we are stronger!

The irreplaceable power of connection has brought us to this most promising moment for NF. Courageous NF patients inspire us, creative volunteers and generous donors support us, researchers, clinicians, advocates, pharma, regulators and all of you motivate us to keep making the connections needed so we can soon say: “We ended NF.”

I encourage you to ‘connect the unconnected’ in your life, and especially for NF. If you have ideas or connections you want to make to others that are obsessed with ending NF – from NF science to NF awareness to NF care, just hit reply to this email, and let us know.

We NEVER have enough connections!

Thank you for reading, and thank you for connecting with our mission to End NF.