My Nonprofit Reviews
Kristine4
Review for Acromegaly Community Inc, Buffalo, NY, USA
Acromegaly is a pituitary disorder where a tumor on the pituitary gland encourages growth hormones to flow uninhibited into the body. People with this disease experience growth spurts and mood swings after adolescence and often take on the visual traits of gigantism in adulthood. It's a physically and emotionally difficult to manage as it is a disease that refuses to hide in an oftentimes cruel and image driven society. I was given the opportunity to volunteer this past year at Acromegaly Community's second annual convention and I was never so impressed with a group of people as I was with this one. The convention days were organized to provide support to all community members including patients, family, friends, medical professionals, and pharmaceutical companies. The key to the weekends success was that everyone had a voice and that support was only an arms length away. We had the opportunity to listen to testimonials, watch videos of current technologies being used in endoscopic surgeries, share personal experiences in small breakout groups, discover new recipes for a healthy lifestyle, and experience new practices in alternative medicines including chakra. The event was extremely well organized and the people, kind and welcoming. Outside of the annual convention, the group continually meets and discusses issues and questions that they may have on Acromegaly's Facebook, Pinterest, and website. The president of the organization, also diagnosed with the disease, spends long unpaid hours monitoring these websites, organizes regional meetings, advocates the community with pharmaceutical companies, speaks at national conventions (most recently Endo 2012), and facilitates chat room meetings and national conference calls. Acromegaly Community is an organization that gets little press because it represents such a rare disease, however it's roots are strong and it's impact huge on those who need an outlet and friends to understand their suffering.
More Feedback
I've personally experienced the results of this organization in...
I've watched my loved ones and friends with the diagnosis engage in vibrant conversation that proactively supports and engages in the knowledge/experience sharing to help others with the difficult decisions that one with Acromegaly is often forced to make.
If I had to make changes to this organization, I would...
I would try and organize next year's convention with the Cushing's group as both diseases have similar traits. And it's always to the benefit of an organization to find more friends for the cause.
Would you volunteer for this group again?
Definitely
For the time you spent, how much of an impact did you feel your work or activity had?
Life-changing
Did the organization use your time wisely?
Very Well
Would you recommend this group to a friend?
Definitely
When was your last experience with this nonprofit?
2012
What one change could this group make that would improve your volunteer experience?
None that i can think of.
Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)
It introduced me to so many new friends and taught me so much more about the disease and the work being done to help those suffering.
How did this volunteer experience make you feel?
Reflective and appreciative of my own life. And even more empathetic to those who aren't so blessed with good health.
