No One Should Face a Rare Disease Alone

Millions of individuals struggle daily with the isolation, fear, and uncertainty that come with rare diseases. Many are children and young adults who desperately need support and understanding. But together, we can change that.

In 2014, I was diagnosed with bilateral Eagle Syndrome (ES). After receiving helpful ES information and incredible support from the members of Ben’s Friends Living with Eagle forum, I had two surgeries which drastically reduced my ES symptoms so I could return to an active, pain-free life. Since 2017 I have been a moderator on the Living with Eagle forum so I can pay forward the help I received.

Eagle Syndrome was named after Dr. Watt Eagle who first defined it in 1937 as elongation of the styloid processes of the skull. Symptoms stem from irritation/compression of cranial nerves. Sometimes vascular tissues in the neck are also compromised affecting blood flow into & out of the brain. Because of its diverse, obscure symptoms, & rarity, it is under-diagnosed. Styloid resection surgery, sometimes with vascular decompression, are the only cure for ES symptoms.

livingwitheagle.org

Why Donate to Ben's Friends?

Your donation to Ben's Friends will provide vital support and connection to those affected by rare diseases. Every dollar you contribute directly helps:

- Maintain and grow our online communities

- Launch new support groups for underserved conditions

- Provide essential information and emotional support to those who need it most

Join us in ensuring that no one faces a rare disease alone. Your donation today can make a lasting impact on someone's life. Together, we can address the challenges posed by rare diseases and build a supportive community for all those affected.

Thank you for your generosity.

New This Year - Become a Fundraiser

As we launch our annual “Friends Helping Friends” year-end campaign, we’re excited to invite you to play a special role in supporting those affected by rare diseases. This year, we’re not just asking for donations – we’re inviting you to become a fundraiser for Ben’s Friends!

You can easily sign up to become a fundraiser right here on this page, just click the "I want to fundraise for this" button and register.

You can also learn more about becoming a fundraiser, and get a bunch of resources and tips to make fundraising easy by heading over to our Friends Helping Friends page.

Want to learn more about Ben's Friends?   Check out our website at https://www.bensfriends.org/