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Cure NF2 Foundation

@curenf2

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Cure NF2 is a non-profit seeking a cure or treatment through gene or immunotherapy. Family and parent-guided and supported entirely by volunteers.

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Congratulations, Glenn and Dr. Cara O'Neill!

The FDA has approved Fayuvi, the first-ever treatment for Sanfilippo syndrome type A, a rare, fatal disease that robs children of their abilities.

For years, Cara, a pediatrician, mother, and member of our Advisory Board alongside her husband Glenn, has fought tirelessly for her daughter Eliza and for every child living with Sanfilippo. After Eliza's diagnosis, they founded the Cure Sanfilippo Foundation to fund research and push for change. Today, that determination has helped turn hope into a real treatment for families who, until now, had none.

Cara and Glenn, your courage, persistence, and love have changed what's possible. We are so proud to have you on our team, and so inspired by what you've achieved.

This milestone is also a powerful reminder of what patient-led advocacy and gene therapy can do for rare disease communities, including ours.

Read the FDA announcement: https://www.fda.gov/news-events/press-announcements/fda-approves-first-gene-therapy-pediatric-patients-sanfilippo-syndrome-type by @curenf2

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2 days ago

What a weekend for the Halloran family! On August 7th, at the NF Symposium in Minneapolis, twins Alanna and Lizzie joined their mom, Danette, on the family panel "Living Between Answers," sharing their journey with families and researchers in the room.
The response was incredible; every doctor took home the handouts, including Dr. Hoerig, who's leading the effort to bring human trials to Masonic Children's Hospital. One physician told the Hallorans they wished they'd heard this talk 30 years ago.
The ripple effects keep coming: the family's been invited to speak to medical students at Children's Hospital, and they're already booked for the next symposium.
Thank you, Halloran family, for putting a human face on this research and helping move both the science and the understanding forward. 💙 by @curenf2

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a month ago

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4 months ago

In this clip from our webinar "Avastin Treatment for NF2", Dr. Scott Plotkin discusses the relationship between hearing loss and treatment with Avastin (bevacizumab), one of the most widely used therapies for vestibular schwannomas in NF2.

At Cure NF2 Foundation, we're committed to bringing expert insights and the latest research directly to the NF2 community.

Watch the full webinar here: https://curenf2.org/about-nf2/webinars/avastin-treatment-for-nf2/ by @curenf2

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4 months ago

Living with NF2 brings unique challenges, but new strategies can help. Discover how psychological approaches and neuroscience-based tools empower individuals to manage stress and find meaning. Our latest webinar explores practical ways to foster well-being.

• NF2 impacts both physical and emotional well-being, leading to chronic stress, anxiety, and identity challenges.
• Acceptance and Commitment Therapy (ACT) helps individuals relate differently to emotional pain and uncertainty, fostering psychological flexibility.
• Practical neuroscience tools like breathwork and bilateral stimulation can help regulate stress and enhance present-moment awareness.

Read the full one-pager: https://curenf2.org/about-us/webinars/mental-health-nf2-swn-webinar/

#NF2Awareness #MentalHealth #ChronicIllness #PsychologicalFlexibility #Neuroscience #CureNF2 #Wellbeing by @curenf2

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4 months ago

We are honored to share and remember Lyren’s story.

Lyren passed away in 2019, but her courage, strength, and spirit continue to inspire our community and our mission to find a cure for NF2.

Her story is a reminder that behind every diagnosis is a person deeply loved by family and friends, and why this fight matters so much.

In honor of Lyren and every family affected by NF2, help us continue funding research and moving closer to better treatments and a cure.

Donate today:
US: https://donorbox.org/nf2-day-2026
Facebook: https://www.facebook.com/donate/983260011165059/
PayPal: http://paypal.com/us/fundraiser/charity/3403825
UK: https://www.peoplesfundraising.com/donation/nf2-biosolutions-uk
Canada: https://www.kbfcanada.ca/en/projects/ending-nf2-through-gene-therapy/
Europe: https://donate.transnationalgiving.eu/landing/nf2biosolutions

Her story continues to inspire hope and action.
#CureNF2 #NFAwarenessMonth by @curenf2

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5 months ago

Behind every diagnosis is a person. A family. A fight.

NF2 is not just a condition: it’s a daily reality for children, parents, and loved ones navigating uncertainty, treatment, and hope.

Their stories are why we exist.
Their strength is why we keep going.

This NF2 Awareness Day, stand with the community and help us continue funding the research that brings us closer to a cure.

Donate today:

US: https://donorbox.org/nf2-day-2026
Facebook: https://www.facebook.com/donate/983260011165059/
PayPal: http://paypal.com/us/fundraiser/charity/3403825
UK: https://www.peoplesfundraising.com/donation/nf2-biosolutions-uk
Canada: https://www.kbfcanada.ca/en/projects/ending-nf2-through-gene-therapy/
Europe: https://donate.transnationalgiving.eu/landing/nf2biosolutions
Mail: Cure NF2 Foundation, P.O. Box 859, West Chester, PA 19381

Their voices are why we will never stop.

#CureNF2 #NFAwarenessMonth by @curenf2

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5 months ago

Behind every NF2 diagnosis is a story, and a child, a family, a future.

Tucker’s journey began with small changes that led to a life-changing diagnosis. Stories like his remind us why this fight matters so much.

This NF2 Day, we’re raising funds to move research forward, toward treatments, toward clinical trials, and ultimately, toward a cure.

Help us turn stories like Tucker’s into hope.

Donate today:
US: https://donorbox.org/nf2-day-2026
Facebook: https://www.facebook.com/donate/983260011165059/
PayPal: http://paypal.com/us/fundraiser/charity/3403825
UK: https://www.peoplesfundraising.com/donation/nf2-biosolutions-uk
Canada: https://www.kbfcanada.ca/en/projects/ending-nf2-through-gene-therapy/
Europe: https://donate.transnationalgiving.eu/landing/nf2biosolutions

Or mail a check:
Cure NF2 Foundation
P.O. Box 859
West Chester, PA 19381

Every story deserves a different ending.
#CureNF2 #NFAwarenessMonth #NF2Day #GeneTherapy by @curenf2

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5 months ago

This NF2 Awareness Day, know the facts and why your support matters.

NF2 is rare, but it affects real people in every community.
Most are diagnosed young. There is still no approved treatment.

But there is hope.

Gene therapy research is advancing and with your support, we can help move these breakthroughs closer to real treatments for patients.

Donate today and be part of the progress:

US: https://donorbox.org/nf2-day-2026
Facebook: (https://www.facebook.com/donate/983260011165059/
PayPal: http://paypal.com/us/fundraiser/charity/3403825
UK: https://www.peoplesfundraising.com/donation/nf2-biosolutions-uk
Canada: https://www.kbfcanada.ca/en/projects/ending-nf2-through-gene-therapy/
Europe: https://donate.transnationalgiving.eu/landing/nf2biosolutions
Mail: Cure NF2 Foundation, P.O. Box 859, West Chester, PA 19381

Every fact is a reminder of why we keep going.
Every donation brings us closer to a cure.

#CureNF2 #NFAwarenessMonth by @curenf2

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5 months ago

This NF2 Awareness Day, we’re taking the next step toward a cure.

We are funding critical research to move AAV9 NF2 gene therapy closer to clinical trials, bringing real treatments within reach for patients.

Before a therapy can be tested in people, it must first be shown to be safe, high-quality, and ready. That’s the work happening now—and it’s what your support makes possible.

Closer to clinical trials.
Closer to a cure.

Donate today and be part of this progress:

US: https://donorbox.org/nf2-day-2026
Facebook: https://www.facebook.com/donate/983260011165059/
PayPal: http://paypal.com/us/fundraiser/charity/3403825
UK: https://www.peoplesfundraising.com/donation/nf2-biosolutions-uk
Canada: https://www.kbfcanada.ca/en/projects/ending-nf2-through-gene-therapy/
Europe: https://donate.transnationalgiving.eu/landing/nf2biosolutions
Mail: Cure NF2 Foundation, P.O. Box 859, West Chester, PA 19381

#CureNF2 #NFAwarenessMonth #NF2AwarenessDay #NF2 Day by @curenf2

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5 months ago

Today is NF2 Awareness Day.

NF2 is a rare genetic condition that can cause tumors to grow along the nervous system, impacting hearing, balance, vision, and more. But behind every diagnosis is a person, a story, and a community that refuses to give up.

Today, we’re sharing Laurel’s story, and standing with every individual and family affected by NF2.

Awareness matters. Research matters.

Join us in raising awareness and supporting the mission to find a cure.

Donate today: https://curenf2.org/donate/
Read Laurel's story: https://curenf2.org/patient-stories/laurel-velez-nf2-story/
#CureNF2 #NFAwarenessMonth #NF2Day by @curenf2

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5 months ago

Living with NF2-SWN comes with real, everyday challenges, especially when it comes to mental health. That’s why we’re bringing together experts for an open discussion on our May 22nd webinar.

We also want to hear from you: what has helped you cope? Share your experience or tips in the comments.

Register for our upcoming webinar "Mental Health & NF2-SWN": https://curenf2.org/about-us/webinars/mental-health-nf2-swn-webinar/ by @curenf2

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5 months ago