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.
Target demographics: Patients, loved ones, and professionals touched by or involved with the rare disease of Acromegaly
Geographic areas served: Everywhere
2012 Top-Rated Nonprofit
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EIN 27-2116493
716- 844-8780
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Community Reviews

Rating: 5 stars  

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.

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.

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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! )

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

Was this review helpful? 
1 previous review
Rating: 5 stars  

1 person 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.

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

Was this review helpful?