ACROMEGALY COMMUNITY INC

Rating: 5 stars   21 reviews

Issues: Cancer

Location: 432 Amherst Street 2nd Floor Buffalo NY 14207 USA

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.

2012 Top-Rated Nonprofit
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Rating: 5 stars  

I am a Soldier on active duty and had 8 years of military service when I was diagnosed with Acromegaly. Army life and service has inherent challenges that have definitely tested my strength, character, endurance, determination, etc over time but this Acromegaly diagnosis, treatment, and recovery has been, by far, the most damanding, exhausting, and depleating challenge I've had in my life so far- physically, mentally, and emotionally. I've been lucky to work for some of the most amazing leaders in the Army and with it's best Soliders. In the Army, we pride ourselves on having a "battle buddy" system that gets us through the hard times, every Soldier-from the time they get off the bus at Basic Training (and are introduced to what seems like an intimidating world "The Army") to the time they leave Service- has someone they can turn to, talk to, ask for help, look up to - it makes a huge organization that much smaller. You're never alone when you're in uniform. Acromegaly introduced me to a really intimidating, overwhelming, uncertain and scarey "world". When I found Acromegaly Community, I suddenly felt like I had a bunch of "battle buddies" and having someone to turn to, to ask for help, to understand, people "who were wearing the same uniform" to help me navigate the system and figure things out was instrumental to my ability to cope effectively with this condition. The existance of Acromegaly Community gives me an identity and I am never alone; I am not only a Service Member who happens to have Acromegaly but I am a person with Acromegaly who happens to be in the Service (just like others are nurses, business-people, stay-at-home parents, students, etc). This is an identity the amazing members of this community make me proud to share. I am so fortunate to have met the people in this community who fight this condition with courage, tenacity, humor, and grace and look after eachother with such concern, care, knowing, and compassion. I am as inspiried by the friendship/connection among members of this community as I am by those I serve with in the Military. The burning colors of the next 1000 sunsets consuming the end of tired days couldn't paint how grateful I am for this organization. It's better than the best. There's Strong. There's Army Strong. There's Acromegaly Community together - Strong. Hooah!

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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?

2012

Rating: 5 stars  

The Acromegaly Community has helped me learn more about the condition. I have met others suffering from acromegaly so, I don't feel so alone. They helped me financially to attend the acromegaly conference. I am truely grateful for the 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?

2012

Rating: 5 stars  

1 people found this review helpful

Acro Community is the most supportive group of people! The group is very organized and very informative.

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Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

Rating: 5 stars  

I was diagnosed 24 years ago when my son was born. It was tough to be a young woman with a scary and disfiguring disease. To have a group like this that helps educate and support such a lifelong illness is too hard to put into words. I am still learning about my disease and receiving support for the hurdles I come across many years later. This group reaches out to families as well. All I can say is thankyou from the bottom of my heart.

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Will you volunteer or donate to this organization?

Likely

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

Life-changing

When was your last experience with this nonprofit?

2012

Rating: 5 stars  

At the age of 30, a year after having my second child, I was diagnosed with Acromegaly. My mind filled with fear and my body was being overtaken by anxiety. My doctors told me that this pituitary tumor was not going to kill me because I was diagnosed and was being treated but that my anxiety would kill me if not controlled. A few years later I found what is now called Acromegaly Community. The one thing I credit this community for, is for controlling my anxiety and saving my marriage. I say this with caution as I know only two people can save a marriage and that is the people in it, but I was reminded when I shared my story of how blessed I was to have a husband that stuck with me through my pre-diagnosis suffering when my moods were a complete mess, through diagnosis/treatment and is still now by my side 10 years later. It is critical for people to realize the toll any medical diagnosis can take on relationships. I finally stopped pushing my husband away and realized he was trying to help me though this tough time, simply in his own way. I was reminded I was blessed to have my husband and my family. I was never alone in this battle. My second support system, Acromegaly Community, allowed me to focus more on my family instead of letting anxiety control my life. The people I met though this community wanted to brainstorm and discuss the issues that were the most critical to explore. I was able to "work" with this group and then just be there as a wife and mother for my family. Prior to finding this non-profit organization I was researching all the time, talking about my condition all the time. Knowledge and understanding was all of a sudden provided to me by my new network of friends that could relate on the most personal level to the issues in life that a Pituitary Tumor producing excess Growth Hormone creates. These issues are softened with kindness, understanding and most of all friendship. Even when treatments are not working for some, I know that simply having a friend suffering with the same condition can be the best medicine of all.

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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

Rating: 5 stars  

Hello my name is Laura Ramsay, I would like you to know how thankful I am for the Acromegaly Community Website..Truthfully this site has been more than helped me face this doease but.has also given me hope and friendship...While undergoing radation therapy for 5 wks the founder Wayne Brown made a trip to see me ...not only did that help me feel not alone but several members made sure to keep my spirits up and that made all the differance...And trust me this website is more informative than any Ive looked at...so much my doctors have also used it...ty wayne and my loved ones ....we make a differance together...:)

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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

Rating: 5 stars  

1 people found this review helpful

when i was diagnosed with acro , i was scared and had no one to talk to who really understood what i was going through, then i found this group where i can read, ask questions, answer questions and rant without anyone judging me .

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Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

How did you learn about this organization?

facebook

Rating: 5 stars  

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! )

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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

1 previous review
Rating: 5 stars  

1 people found this review helpful

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.

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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

Rating: 5 stars  

My sister and my son both have Acromegaly and it has been an absolutely wonderful place to share stories and gain information about this disease that hardly anyone knows about. Well run and organized and truly from the heart to help others.

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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

Rating: 5 stars  

This is a great group, they help you get a better understanding of what you are going through. You won't feel judged and will having a feeling if joy to know that you are not alone. They are like family to me and helped me get through this, even on my bad days.

More Feedback

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

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