I would recommend it because instead of seeing MEN2b from first person, I got to experience it from all angles and it felt nice to relate to people about things not even doctors understand.

For most of us who went to the gathering, it was the first time we'd ever met someone (other than a blood relative) with MEN2B in person and it took us decades of waiting before it happened! Totally worth the wait and traveling from a different country for it though! I had a wonderful time sharing experiences, knowledge, and dreams with others who instantly understood the challenges of MEN2B life and who wanted to make it better for each other. We came together as strangers but left feeling like family.

The MEN2b Social was such an amazing experience for myself and my son. He was diagnosed with MEN2b when he was 4 years old. At the time of this review, he is 13. Our doctors knew very little, if anything, about the disease at the time of diagnosis and haven’t gained much more knowledge about it other than through my son’s needs. As his mother, I immediately began researching when he was diagnosed. I could barely find any research that wasn’t grim or extremely negative. I stumbled upon the MEN2b Facebook page where I met Dennis and Shelly Argyrakis. When they decided to host the first social, I knew it was an event that we had to attend. The event was absolutely spectacular. I stood in awe watching as the MEN2b’ers all met one another for the first time, adults and children alike. This was truly an amazing experience, especially after being told how rare of a disease it was and that we would likely never meet someone with it. The immediate sense of camaraderie and feeling of being a family was the biggest blessing of our experience. For the first time, we did not feel alone. We met people with the similar stories, experiences, physical appearance, challenges, and most importantly…. HOPE! The food, accommodations, events for kids, and roundtable experiences were all a huge bonus!! We canNOT wait for the next social!

I enjoyed talking with adults with similar medical issues, getting ideas from them and helping parents of MEN2b kids better understand what it's like growing up with the syndrome

It was amazing meeting others who understood so well what myself and my daughter deal with daily. It was great to get to compare notes and experiences with others who "get it". I felt like I had a larger extended family in a day and we can't wait to meet up again!

As the widow of a MEN2b patient, mother of two MEN2b daughters, and a grandmother of one MEN2b granddaughter, it was important to me to have communication and share ideas with other MEN2b families. The pleasant, non-stressful environment made it easy to share with strangers who soon became friends. I'm looking forward to the next meeting!