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NF2-SWN Accelerator Initiative

About the NF2-SWN Accelerator Initiative

The Children’s Tumor Foundation NF2-SWN Accelerator Initiative is dedicated to finding effective treatments for NF2-related schwannomatosis, or NF2-SWN (previously called neurofibromatosis type 2, or NF2). This powerful initiative is bringing treatments to the clinic (and patients) by expanding the clinical drug pipeline for NF2-SWN, improving drug selection through innovative testing models, and developing gene therapy options that address the underlying genetic causes of NF2-SWN.

As a global leader in NF research, the Children’s Tumor Foundation is dedicated to developing cures for all forms of NF. The Foundation and its partners bolstered the NF2-SWN research field through team science with Synodos for NF2, bringing together multidisciplinary scientists from 12 world-class labs. The Synodos teams shared information, datasets, and results in real-time at every step of research development and have since made that data freely available at nfdataportal.org.

That collaborative effort resulted in the identification of promising new clinical candidates for NF2-SWN. The NF2 Accelerator Initiative leverages this new knowledge into a new and ambitious structure with the goal of speeding up the drug discovery process. The NF2-SWN Accelerator Initiative’s three-pronged Phase One goals were fully funded and proved to have a far-reaching impact.

In 2022, the Initiative will continue the momentum and add a second phase to these endeavors, which will invest another $1.5 million toward drug discovery, clinical trials, and gene therapy for NF2-SWN. This important work will further the life-saving progress for patients living with NF2-SWN.

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Become an NF2-SWN Accelerator

An NF2-SWN Accelerator is a community advocate who uses their voice to raise awareness and share information about CTF’s commitment to expand the drug pipeline and accelerate treatments for NF2-related schwannomatosis, or NF2-SWN. If you are interested in becoming an NF2-SWN Accelerator, or you would like to fundraise for the NF2-SWN Accelerator Fund, email us at donorrelations@ctf.org.

“I believe much better treatments for NF2-SWN are within our grasp TODAY.
To reach that goal, it will take a rock-solid belief, within each of us affected either directly or indirectly, that better options are truly attainable. If you have NF2-SWN, or have a family member or friend with NF2-SWN, you are needed. You are part of the solution.
– Tracy Tulloh Galloway, mother to McKinnon, who lives with NF2-SWN

“We, like any parents, only want the best for our children and when something is wrong we try and fix it. Brian has NF2-SWN, so we are trying to fix it. It is that simple. We want to “fix’ it, for Brian, so NF2-SWN is a distant memory”
– RB Harrison, father to Brian, who lives with NF2-SWN

“Research has already had a positive impact on my quality of life, but there is a need for more. Initiatives like this give me great hope for the future, for myself and others affected by NF2-SWN.”
– Edith Garrett, who lives with NF2-SWN

View More NF2-SWN Stories

NF2-SWN Meetups

CTF’s NF2-SWN Meetups bring the community together to connect with each other and hear from leading experts in the NF2-SWN space. These regular virtual gatherings began under the direction of our NF2-SWN Accelerator Initiative Honorary Chair, Dr. Oliver Adunka. For more information about how to join these interactive and informative sessions, email us at nf2@ctf.org

Find all the NF2-SWN Accelerator Meetup recordings on our NF2-SWN Education playlist.

Initiative Infographic

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Initiative Launch

On the occasion of World NF2-SWN Awareness Day, May 22, 2019, the Children’s Tumor Foundation announced the establishment of a three-year research initiative dedicated to finding effective treatments for NF2-SWN (formerly referred to as NF2), along with a substantial investment of $2.3 million in this bold new effort, called the ‘NF2 Accelerator Initiative’. The initiative was established to expand the NF2-SWN clinical drug pipeline, improve drug selection, and invest in gene therapy for NF2-SWN.

Watch the captioned NF2-SWN Awareness Day Research Webinar from December 11th, 2019, with additional details and Q&A below:

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The NF2-SWN Accelerator Committee

The NF2-SWN Accelerator Initiative Committee is a dedicated group of patients, fathers, mothers, and grandparents who are impacted NF2-SWN, and are committed to helping CTF drive research toward the discovery of treatments and, ultimately, an end to the suffering of NF2-SWN.

  • Oliver Adunka, MD – Honorary Medical Chair
  • Ian Desmond, Honorary Chair
  • RB Harrison, Co-Chair
  • John Morris, Co-Chair
  • Nicola Kean Brainin
  • Tracy Galloway
  • Edith Garrett
  • Mark Reese
  • Carol Harrison
  • Matthew Hay
  • Beth Hennessey
  • Becky Irvine
  • Lara Levine
  • Roland Thoms

Colorado Rockies Baseball Player Ian Desmond was honored as an NF Champion at the CTF 2019 National Gala, and serves as the Honorary Chair of this initiative. Ian became close friends with Ethan Brown, an NF2-SWN warrior who sadly passed away in 2021. Ethan was a friend to many, a published author, a dedicated community builder, and a passionate advocate for all NF2-SWN patients and the Children’s Tumor Foundation.

“It was important for me to build awareness of this disease and continue the fight for a cure. If we don’t have a voice, how can we be heard?”
– Ethan Brown, from his autobiography, “The Fight of My Life”

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