Patient and Family Advisory Council
Your voice is at the center of everything we do at Beyond Celiac. We rely on input from our community to ensure that we’re meeting your wants and needs when it comes to living with celiac disease. Because of this, we created the Patient and Family Advisory Council, a group of passionate community members who are all affected by celiac disease in some way.
Meet our Council and see why they’ve applied to be a part of this community!
Marge Benham-Hutchins, PhD, RN – Texas
“As an academic researcher, who has also participated as a patient in celiac disease research, I am interested in raising awareness about the importance of celiac disease research. I also think this will be an excellent opportunity to network and learn more about how my skills and expertise can benefit people with celiac disease.”
Julie Kennedy – North Carolina
“My 8 year old daughter and I were diagnosed with celiac disease in September of 2014, but we were left with many unanswered questions. After doing extensive research online, I found most of our questions were answered by Beyond Celiac and decided I wanted to get involved. As a newly diagnosed patient, I realized there are many areas in the field of celiac disease that need improvement, such as increasing awareness, strengthening follow-up care and diagnosis procedures, and expanding treatment options. Hopefully one day, under the guidance of Beyond Celiac, there will be a cure for celiac disease.”
Shannon S. Myers MSN, FNP-C – Arizona
“I was diagnosed with celiac disease two years ago. Now that I am feeling better, I would like to become more involved with celiac disease awareness and education. As a Nurse Practitioner, it is especially important to me that others do not wait as long as I did to be diagnosed.”
Michael Paroda – Ohio
“I would like to be more involved in the celiac disease community. I would like to help educate new parents of young children so we can prevent celiac disease from developing at a young age.”