Reflections on NF Forum from First-Time Participants

Jun 15, 2018, Posted in Community, Latest News, NF Forum, NF2, Schwannomatosis

In May 2018, the NF community gathered in Atlanta, GA for a long weekend of patient engagement training, leadership training, research updates, and patient and family support.  We asked two first-time attendees to reflect on their experience.

Synodos for NF2 Consortium Publishes Key Results of its Work

Jun 13, 2018, Posted in Latest News, NF2, Press Release, Science, Synodos

Study Shows that Drug Combination Therapies Effective in Treating Schwannomas and Meningiomas

The Synodos for NF2 consortium of the Children’s Tumor Foundation (CTF) today published its first set of results and released its second set of data in the leading scientific journal PLOS ONE

New Research Investigates Potential Therapeutics for NF2

May 23, 2018, Posted in CTF in the News, Latest News, NF2, Published, Science

By Salvatore La Rosa, VP Research and Development

Early investments from the Children’s Tumor Foundation are paying off and delivering innovative and impactful research. It’s great to see research moving forward thanks to the support of both private and public funding. Our philosophy of betting on high-risk high-reward projects is proving successful and will eventually help us realize our vision of ending NF.

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Stories of NF: Rachel S.

May 7, 2018, Posted in NF Hero, NF2

I was 16 when I began to have hearing issues. After getting my hearing tested, the results revealed profound hearing loss in my right ear. The hearing test lead to an MRI and then to my diagnosis of NF2.

For me, the physical pain that comes with NF pales in comparison to the mental weight the disease carries.

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Accelerating NF Research Thru Technology

Feb 28, 2018, Posted in Latest News, NF Hero, NF2, Science

By Onno Faber

Rare Disease Day is recognized every year on the on the last day of February. It’s a time for the entire rare disease community to come together to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives. Neurofibromatosis affects 1 in 3,000 people overall; NF2 is even more rare (1 in 25,000) and schwannomatosis even more rare (1 in 40,000). 

We asked NF2 patient Onno Faber to tell us about his journey to a diagnosis and how he leveraged his experience as a Silicon Valley technology entrepreneur to accelerate rare disease research & drug development.

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