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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More Info

EIN 27-2116493
716- 844-8780
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Community Reviews

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!

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

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Rating: 5 stars  

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.

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

Was this review helpful?