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2012 Top-Rated Nonprofit

Acromegaly Community Inc

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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

21 Stories from Volunteers, Donors & Supporters

Board Member

Rating: 5

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!

Client Served

Rating: 5

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.

1

General Member of the Public

Rating: 5

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

1

General Member of the Public

Rating: 5

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.

ACRO

Client Served

Rating: 5

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.

Laura78

Client Served

Rating: 5

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...:)

1 Cheryl37

General Member of the Public

Rating: 5

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 .

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.

Kelly44

Client Served

Rating: 5

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.

Sandra Nana M.

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

Professional with expertise in this field

Rating: 5

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.

Professional with expertise in this field

Rating: 5

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

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.

1

Client Served

Rating: 5

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.

1 Jane24

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1 Janet20

Client Served

Rating: 5

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.

1

Board Member

Rating: 5

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.