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August 9, 2012

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August 9, 2012

Acromegaly is a disease made all the more difficult by its rarity. After a laborious diagnosis you discover that no one really understands how you feel or what you need to know. Acromegaly Community is a wonderful resource of information and compassionate support.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

August 9, 2012

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August 9, 2012

I am a research psychologist who conducts studies among doctors and patients about different disease states and their treatments. In a recent study regarding acromegaly I reached out to Acromegaly Community membership to learn more about their experience overcoming a disease that for many can be life-long and affect all aspects of their health and well-being. To my happy surprise I found the Acromegaly Community to be very well organized and run with a dedicated staff of volunteers and board members. Not only did I feel that the group was well run, but the members appear to gain so much from the connections and support that it provides. Community members that I met were so well focused on putting their disease behind them and getting the most out of life that it became apparent that their connection and interactions through this group were integral to their happiness and positive outlook. As a group they were better educated about treatment options and the need to take ownership of their health and progress than non-members who I discovered through other channels. The experience of meeting and learning about the group was so positive that I have since mentioned them to acromegalics and health care professionals as an important resource.

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How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

August 9, 2012

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August 9, 2012

Wayne has created an open and sharing community that strives every day to provide information, access to others, and a caring, supportive environment.

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How does this organization compare with others in the same sector?

Quite well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

August 9, 2012
1 person found this review helpful

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August 9, 2012
1 person found this review helpful

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.

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The Great!

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.

Ways to make it better...

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.

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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.

December 22, 2011
1 person found this review helpful

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December 22, 2011
1 person found this review helpful

Acromegaly Community is my lifeline during the dark moments and my extended family when I’m looking for someone to understand what it feels like to have acromegaly. The world became a very scary when I was diagnosed with a rare disease, and it became even more terrifying when I couldn't find anyone who could relate to what I was going through. Acromegaly Community has given me the opportunity to network with my fellow acropals throughout the world. Not only can chat with them, but I can find a friendly shoulder to cry on when I need it, and be ready to offer my support to an acropal in need. It’s been a blessing to meet my new friends in person, look them in the eye, and tell them that I know exactly how they feel. Long story short, I don’t know where I would be without the emotional care and support that I’ve recevied from my network at Acromegaly Community.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2011

December 22, 2011
1 person found this review helpful

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December 22, 2011
1 person found this review helpful

The Accromegaly Community is my safe place. I know when I go there, there will be others like myself. We can talk, we understand when someone is describing their feelings and there's always kind words of encouragement and support. Not even our doctors truly understand the way those in the community understand. I learn from reading the experiences of others that have acromegaly. Many of us are on the same medications and we share symptoms. I value my relationship with the community and am so glad it is there for us.

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How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2011

December 22, 2011
1 person found this review helpful

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December 22, 2011
1 person found this review helpful

I am the wife of a patient with this disease. This new support community has given us the opportunity to meet other people in the same situation as us. There are telephone conferences and an annual meet up that gives have been very helpful. The telephone conferences usually include a speaker who many of us might not have the chance to meet of ask questions of, all and all a great way to stay connected to people who really do know what you are going through.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2011

December 22, 2011
1 person found this review helpful

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December 22, 2011
1 person found this review helpful

Life- changing is right on. Meeting other people with Acromegaly meant so much to me. Acromegaly Community gives us the support we need that can't be found anywhere else. I would be so alone if not for the Community. Bringing us together in many ways helps a great deal. I also like the fact that Acromegaly Community is run the right way. By a fellow Acromegalic.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2011

December 22, 2011
1 person found this review helpful

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December 22, 2011
1 person found this review helpful

Words will never be enough to tell anyone how finding this support group has helped me with accepting this disease. I was very scared and very sad before finding the community. I still have my rough days but sharing information and leaning on each other has been life changing. I really and truly do not feel so alone. We are not physically together but I feel as though we are holding eachothers hand. I hope that this bond will carry each of us when we feel we can not carry ourselves. I find it wonderful that people understand me and my body without ever meeting me. Mr. Brown has changed many lives for the better.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2011

December 22, 2011
1 person found this review helpful

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December 22, 2011
1 person found this review helpful

This charity was founded by a patient with the intent of supporting other patients and their loved ones to understand and managed the issues they deal with, as it relates to Acromegaly. If a patient has a question or concern, there is a real live person who understands the disease and is willing to help out.

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Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2011

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