The American Multiple Endocrine Neoplasia Support (AMEN Support) is a voluntary organization whose mission is to provide education and support to patients, their families and medical personnel regarding multiple endocrine neoplasia (MEN) type 1, MEN type 2a, MEN type 2b. To learn about MEN and AMEN Support, visit their website www.amensupport.org
Linda Hageman, co-founder of AMENSupport and Glen Gray, their Vice President of Development both submitted their answers to this Q&A below about their experiences so far working with the MEN community.
1.) What does it mean to you personally to be a patient organization serving the rare community?
Glen Gray- I have a rare disease, Multiple Endocrine Neoplasia Type 1. Although I had retired, the call to serve my rare disease community was very strong, because I have a professional healthcare background. It affords me an opportunity to serve people like me.
Linda Hageman- Being a MEN individual and having all of the tumors that a MEN person can have, including a pancreatectomy, brought my Husband John and I to the realization that there were not any nonprofits for MEN. We started American Multiple Endocrine Neoplasia Support (AMENSupport) in the weeks following the complete removal of my pancreas.
I keep what I call a Happy Notebook and all of the favorable letters, recommendations from physicians and Medical Centers. The most touching statements are the ones that have thanked myself and or our organization.
2.) What do you find your patient community values most from your organization?
Glen Gray- I think they value the opportunity to develop personal relationships and learn more about their syndrome.
Linda Hageman- Our Mission is to provide accurate, factual and up to date information to EDUCATE thus EMPOWERING MEN individuals and families to make informed medical decisions, about their healthcare.
3.) What are some of the challenges your organization has faced?
Glen Gray- By far, it is fundraising! We have a wonderful cause, but because we are an organization that supports a rare syndrome that results in people developing other diseases, the money goes to those disease groups. For example, our members develop tumors and cancers of various kinds, which result in everything from diabetes to pancreatic/liver cancer to medullary thyroid cancer. Therefore, those disease groups get funding and we don’t.
Linda Hageman- Funding, staff, and grant applications
4.) Whats been your most successful awareness campaign and/or fundraising event?
Glen Gray- We have outstanding educational and empowerment seminars which are embraced by both our members and those health professionals who specialize in our diseases, primarily endocrine surgeons.
Linda Hageman- Mayo Clinic has had a MEN Seminar every year since 2011. Northwestern Medical Center is also sponsoring a MEN Seminar in 2015. We have participated in Rare Disease day. Every year our local newspaper does a story about NORD and Rare Diseases and our Governor, Bill Haslam, has declared, Feb. 28, as a Tn. State day of recognition.
1027 Hampshire Drive
Maryville, TN 37801
NORD is excited to be putting the spotlight on AMENSupport this week! Stay tuned for posts about AMENSupport on NORD social media throughout the week. If you would like your NORD Member Organization to be in the spotlight for the week, email your NORD Membership Manager for more information.