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Nonprofit Overview

Causes: Health

Mission: It is our mission is to provide an emotional and communal support network for people touched by Acromegaly. We offer a central location for medical information on issues including surgery, medication, radiation and post diagnosis support. Most importantly, we provide a network of emotional support for Acromegaly patients, their friends and their family.

Target demographics: Patients, loved ones, and professionals touched by or involved with the rare disease of Acromegaly

Geographic areas served: Everywhere

Programs: Conference to educate the public and support research regarding the medical condition known as acromegaly.

Community Stories

2 Stories from Volunteers, Donors & Supporters

Mary DeAnn K.

Client Served

Rating: 5

This organization is vital to the health of those with Acromegaly. There are many men and women suffering today wtih Acromegaly and they may not even know it. This organization has a goal to educate the general public about this condition in hopes of preventing long term damage from excess growth hormone. Money is not everything but it sure makes life easier. Those suffering with active acromegaly that cannot afford the best treatments available is another issue that Acromegaly Community helps to address. These are just two of the ways that I know Acromegaly Community reaches out to those in the community. It is small but mighty. ( Just like the pituitary! )

Previous Stories
1

Volunteer

Rating: 5

There is nothing that can heal someone emotionally more than friendship. Acromegaly Community opened up my circle of friends and allowed me to move forward with my life after my diagnosis and treatment. Instead of feeling like I needed to be the one to search for answers on how to manage this condition I felt like I could finally stop searching and focus again on my family after I met Wayne. He took the load off of my hands. My load that was weighing me down, physically, emotionally and spiritually. He allowed me to share all of my thoughts and research, which allowed me to "let go" and focus my time on my family. In a way, Wayne ( Acromegaly Community ) saved my family which was a little rough on the edges due to my medical condition. I was on my last straw and did not understand why my husband did not want to hear about Acromegaly everyday. He was sick of it and basically did not want to hear the word in the house anymore. This made me resentful, distant, apathetic and angry. Wayne, gave me a different prespective. He said, " You are lucky to have a husband who cares for you. " Wayne could see my husband was trying to help me by helping me let go so I could focus my time on my children. This was about three or so years ago and looking back I am so thankful. This time has been priceless with my family. I am so blessed that Wayne took my " rambling throughts " and assured me he would help people with the information. He also let me work at my own pace and just basically was a mentor for me getting back into the teaching world when he was just steping out. Friendship is key in life and Acromegaly gave me Wayne as a friend and many many more that will be my friends for life. ( Michael W. Smith ~ Friends are Friends Forever If The Lords the Lord of Them.....) Thanks! I hope I can pay forward what has been given to me in the years ahead.

1 Kristine4

Volunteer

Rating: 5

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.