The Ramsay Hunt Syndrome Foundation

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The Ramsay Hunt Syndrome Foundation

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The Ramsay Hunt Syndrome Foundation (RHSF) is a 501(c)(3) nonprofit organization. Donate directly here: givebutter.com/RHSF

We founded the RHSF in 2024 to provide improved education for patients, their families and friends, and providers.

10/14/2026

Recognizing the symptoms of Ramsay Hunt syndrome early can make an important difference in receiving timely treatment. At our Face Forward 2026 Patient Support Summit, Dr. Tyler Rist, a facial plastic and reconstructive surgeon at , emphasized the importance of greater awareness among healthcare professionals
What should you know?

Recognize the signs: Facial paralysis, ear pain, hearing changes, dizziness, or a blistering rash may indicate Ramsay Hunt syndrome.

Seek timely care: Treatment is generally most effective when started within the first 72 hours.

Find specialized support: Providers experienced in facial paralysis can help guide treatment and recovery.

Greater awareness helps patients advocate for their health and access appropriate care. Thank you, Dr. Rist, for sharing your expertise with our community!

10/12/2026

When living with Ramsay Hunt syndrome, facial paralysis, or synkinesis, finding the right rehabilitation specialist can be an important part of recovery.

At our Face Forward 2026 Patient Support Summit, Mara Robinson, PT, MS, shared the importance of working with a physical therapist who has specialized training and experience in facial rehabilitation.Specialized facial therapy may include neuromuscular retraining, soft tissue mobilization, relaxation techniques, and individualized home exercises to help improve facial function and empower patients to better understand and manage their recovery.

Mara also highlighted something at the heart of our mission: the importance of community. Connecting with others who share similar experiences can help individuals feel heard, understood, and supported throughout their journey. 💜

🔗 Learn more about Mara's approach to facial rehabilitation: https://mararobinsonpt.com/specialties

10/11/2026

Every experience shared brings us closer together.

We're excited to share a series of videos featuring patients, attendees, and medical experts from our Face Forward Patient Support Summit.

Through personal stories, meaningful conversations, and valuable insights, we hope to continue the education, connection, and support that made this gathering so special.

🎥 Stay tuned! We'll also be sharing recordings from the full summit, giving everyone in our community the opportunity to learn from the presentations and experience the event, whether you were able to attend in person or not.

Thank you for being part of our growing community. 💜

09/23/2026

To our incredible speakers, sponsors, donors, and Ramsay Hunt syndrome community, thank you. 💜

Whether you joined us at Face Forward or supported us from afar, we are grateful for you. Together, we can improve care through support, education, and advocacy.

This is only the beginning!

09/19/2026

We’re thrilled to be here today for the RHSF Face Forward Patient Support Summit.

If you weren’t able to join us in person, don’t worry. We will be sharing essential information, resources, and highlights from today with our entire RHS community. Stay tuned.

09/15/2026

Time matters with Ramsay Hunt syndrome. Patients with suspected RHS should be evaluated immediately, and treatment within 72 hours of symptom onset gives the best chance at improved outcomes.

High dose steroids and antiviral therapy are the current standard of care. This is a conversation worth having with your provider without delay.

Share this post to help increase awareness for RHS.

www.ramsayhuntfoundation.org/for-patients

09/14/2026

The first-ever RHSF Patient Support Summit is almost here, and this is the final week to register!

This summit is for the entire Ramsay Hunt Syndrome community: patients, caregivers, family members, friends, loved ones, healthcare professionals, and anyone who wants to learn, connect, and show their support. All are welcome!

Join us for a meaningful day of expert education, practical resources, shared experiences, and connection with people who truly understand the RHS journey.

📅 September 19, 2026
📍 Chapel Hill, NC
💜 All are welcome.

🔗 Register now: ramsayhuntfoundation.org/faceforward2026

We can’t wait to see you there.

09/13/2026

Dry eyes and tears at the same time can feel confusing, but for someone with Ramsay Hunt syndrome, it makes sense. Decreased blinking on the affected side allows the eye to dry out, even while tears continue to fall.

It's a small detail, but it matters. Eye care is not optional in RHS recovery, it's essential.

Learn more: www.ramsayhuntfoundation.org/eye-care

09/11/2026

No two recoveries from Ramsay Hunt syndrome look the same. Some people improve within weeks. Others see partial recovery over six months, followed by symptoms that stay longer. Some notice changes in facial movement a year out, with healing continuing for up to two more years.

Fatigue is common in those early months. Rest is part of the treatment, not a setback. And if the emotional weight of this journey becomes heavy, mental health support is worth seeking out, too.
www.ramsayhuntfoundation.org/mental-health

Address

PO Box 2038
Chapel Hill, NC
27515

Website

https://www.ramsayhuntfoundation.org/, https://givebutter.com/RHSF

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