ARIZONA MYELOMA NETWORK
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I was asked by ARIZONA MYELOMA NETWORK to videotape their conference in Window Rock, AZ for the first time. Having spent 21 years in video productions I have filmed dozens of seminars and conferences for various corporate clients and non profit orgs and I can say that this group of people is highly motivated, very professional, and the conference they put on was information packed. While working I personally learned a great deal about Myeloma.
Their motivation to bring this topic and conference to the Navajo Nation is right on the mark and comes from the heart to help people understand and deal with this affliction. A great group of people to be associated with.
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I've personally experienced the results of this organization in...
the conference at the Navajo Nation in Window Rock, AZ in June of 2011.
Ways to make it better...
If I had to make changes to this organization, I would...
help them with getting their message to the outside world. The founders and staff are very intelligent, creative, and they know their mission statement. They have the ability to evolve and grow their organization and because they believe in themselves and the purpose of mission, they are attracting the right individuals, sponsors, and people to get things going. They are on the right track.
I first became aware of Arizona Myeloma Network through their nomination for the Hon Kachina Volunteer Award. It was of special interest to me since my father battled multiple myeloma for 10 years and I saw first hand how that illness is often overlooked by many of the larger cancer charities. I was also impressed by how they actively reached out to the caregivers of MM patients by providing conferences and support groups to help them address their needs and concerns. AZMN has done an excellent job of bringing educational conferences to Arizona with top researchers and professional in the MM field. They have also reached out to the Native American tribes in the Southwest teaching their members about cancer awareness and prevention through sponsored conferences in northern Arizona.
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I've personally experienced the results of this organization in...
This organization has helped me by increasing my awareness and understanding of multiple myeloma. It has allowed me to learn about the most recent treatments and successes in the field of treating this cancer. I have also benefited from discussions with other MM caregivers who understand where I am coming from.
Ways to make it better...
If I had to make changes to this organization, I would...
If I had to make changes to this organization I would like to see them increase the awareness of their activities through increased marketing and public relations efforts, particularly in the arena of social media.
The Arizona Myeloma Network (AzMN) is a relatively young non-profit organization that is making a bigger difference in the community every year. Besides addressing the needs of myeloma patients, which is a relatively small segment of cancer patients in general, AzMN provides valuable assistance to caregivers and underserved populations in Arizona, particularly Native Americans. Essentially, AzMN helps those who are often looked over.
The annual Navajo Nation Cancer Awareness and Advocacy Conference at Ft. Defiance has helped this important community by bringing knowledge and care to a population that has not enjoyed the same access to resources found in the greater metropolitan areas of Arizona. There is a genuine sense of compassion shared by physicians, researchers, and caregivers at this growing conference presented by AzMN. As the scope of the Ft. Defiance conference encompasses all cancers, not just myeloma, the needs of patients in this community are more specifically addressed, and as a result, the effectiveness of this conference increases each year.
The flagship event of AzMN is the Annual Living With Myeloma Conference, typically held in the spring each year in Scottsdale, AZ. There is no other event like it in the region. Myeloma patients and caregivers get direct access to leading physicians and researchers from organizations such as Mayo Clinic, TGen, Cancer Treatment Centers of America, Arizona Cancer Center, and MD Anderson. This conference gives hope to those affected by myeloma, providing information on the latest treatments and methods for improving quality of life.
AzMN also presents a 5k “fun”-raising run in the spring, and an excellent, well-organized golf tournament in the fall. Both events have a good-natured feel to them and are enjoyed by people from all walks of life.
Kudos to the Arizona Myeloma Network, and especially Founder and President Barbara Kavanagh for being a tireless champion of the mission of AzMN!
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I've personally experienced the results of this organization in...
attending all of the events that AzMN presents. There is an unmistakable sense of compassion and connectedness at the conferences and a tremendous amount of fun at the fundraising events. It is readily apparent that the attendees of the conferences leave with a renewed lightness, armed with new knowledge and hope.
Ways to make it better...
If I had to make changes to this organization, I would...
give them more funding to carry on their important mission.
The Arizona Myeloma Network is a quality organization, locally founded by a very determined, resourceful woman who is passionate about getting help and information to Myeloma patients in my state. I myself am a Myeloma patient and help facilitate a Myeloma support group that she joined (her husband has Myeloma) and can tell you first hand that she gets things done for patients in our state like no one else. Her organization networks with all the other organizations that help Myeloma patients and she made it her job to get to know all the Myeloma specialists in our area. Her organization was instrumental in bring some of the best doctors in the field to speak to our support group and in so doing opened up a whole new level of care and information to patients in Arizona. The next best thing the organization did was start a yearly Myeloma conference that is free of charge and brings in top quality Myeloma experts as speakers. It is one of the best places to get information for the newly diagnosed patients as well as seasoned ones. People come from all over the state and it fills a very important function of providing a truly quality program close to home. This is a wonderful service, especially for those who aren’t well enough to travel great distances for help and information. This organization has been life enhancing on many levels for Myeloma patients. Thank you AZMN!
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I've personally experienced the results of this organization in...
access to information, introduction to doctors that are Myeloma experts and emotional support
Ways to make it better...
If I had to make changes to this organization, I would...
give them more grants so they could provide more programs
AZMN has played a large role in educating Arizonans about myeloma and other forms of cancer. In particular, the organization has been instrumental in helping groups that lack access to medical care treat and understand the various forms of cancer.
The Great!
I've personally experienced the results of this organization in...
By attending the annual Myeloma Conference. The organization has been very successful in providing information about the most recent research and treatment options available for myeloma.
Ways to make it better...
If I had to make changes to this organization, I would...
Try to spread the word about this organization to increase the number of volunteers and improve the funding to further grow its great programs and events.
My mom became active with AZMN after my dad was diagnosed. I have attended events as a participant in the past, and heard my mom recount her experiences as a volunteer. Dad passed about 2 months ago. I am so grateful for the friendship and support he and my mom had through AZMN. I decided to give my time, and have received so much in return.
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I've personally experienced the results of this organization in...
... the support offered to my parents since my dad's diagnosis with Multiple Myeloma. They offered not only emotional support, but helped them navigate the confusing path as a cancer patient and caregiver.
Ways to make it better...
If I had to make changes to this organization, I would...
I would offer ongoing facilitator training to the tribal women to help them to begin to run the conference.
More feedback...
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?
A lot
Did the organization use your time wisely?
Very Well
Would you recommend this group to a friend?
Definitely
Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)
absolutely! I fell in love with the Navajo Nation and can not wait to return. I met wonderful native women with whom I connected and exchanged contact information.
How did this volunteer experience make you feel?
I felt like we made a real difference in te lives of the people. If just one person learned about early detection of cancer, recognizing symptoms or gained an awareness that was a catalyst to lifestyle change - then I was able to have an impact.
When was your last experience with this nonprofit?
2011
My name is Kurt Riske and I have been serving on the board of the Arizona Myeloma Network for almost five years. I would like to let you know that is has been a pleasure working with Barbara and Jack over these years. Their dedication not only to this organization but helping others is remarkable. They are a couple of the most caring people that I know. They have built an organization into a reputable non-profit that continues to grow year after year. We can not do this without the help of the community and the grants that we recieve. Our race, golf tournament, and conferences are what keeps our orgainization going in the hope that people will learn more about myeloma. This organization works very hard to help others and I am proud to be a part it.
The Great!
I've personally experienced the results of this organization in...
the safisfaction of helping good people. My brother's wifes father passed away from yeloma last year and it is great to know that I am working towards raising money to help support finding a potential cure.
Ways to make it better...
If I had to make changes to this organization, I would...
add more board members.
I have volunteered for Arizona Myeloma Network for a few years, but I joined as a board member in 2010. Arizona Myeloma Network provides much needed information to the community it serves, not only for myeloma patients and caregivers, but the community at large. As founder, Barbara Kavanagh discovered, it's hard to find information and help for myeloma patients. She wanted to do something to help others, so they wouldn't have to struggle the way she did. AzMN started out by developing a Living with Myeloma Conference which is now in it's 5th year. The conference brings researchers, patients and doctors together to increase myeloma knowledge. In it's third year, the Race for Hope for all Cancers is an uplifting event that brings hope to myeloma patients and families, but also those with other types of cancer. The Navajo Nation Cancer Awareness Conference brings cancer resources and information to the Navajo people, an underserved segment of the population. AzMN works tirelessly to help others and give back to their community and those with myeloma.
The Great!
I've personally experienced the results of this organization in...
seeing the difference it has made to countless families seeking information and support.
Ways to make it better...
If I had to make changes to this organization, I would...
I think they do an amazing job and with more support, they will continue to provide outstanding services to their community.
Arizona Myeloma Network was brought to my attention in January of 2008 when my husband was diagnosed with multiple myeloma, a blood cancer with which we were totally unfamiliar. We didn’t know where to turn locally for up to date information. Barbara and Jack Kavangh have been a blessing to us on so many levels. They have provided us with the resources that we required to make informed decisions about my husband’s care. We were so impressed with the organization that we soon became volunteers with AzMN. Their annual Living with Myeloma Conference brings to the Phoenix area top physicians and researchers who share the newest information available. Sadly, my husband passed away from the disease in April, 2011. I am so proud of the work that AzMN has done for us personally and in our community that I continue to give my time and efforts so that AzMN is able to make resources and advocacy available to others who will be walking the same path.
The Great!
I've personally experienced the results of this organization in...
Being a caregiver myself, I consulted with AzMN in the development of a Caregiver Program. I saw firsthand the difference that information made in my life. Because I was able to implement those lessons, I feel that I did an infinitely better job in caring for my husband and myself in the process.
Ways to make it better...
If I had to make changes to this organization, I would...
like to see more funds available to afford AzMN the ability to continue their important work.
More feedback...
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
Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)
In the past 3+ years, I have learned that in caring for a loved one with cancer, you cannot stop in the pursuit of new information. I have met incredible physicans from around the country that I would not have had the opportunity to meet within my community. I have been inspired by meeting myeloma survivors who share the story of their journey and courage.
How did this volunteer experience make you feel?
I am proud and grateful that I am able to be a part of an organization that is so keenly aware of the issues involved in dealing with this dreadful disease.
When was your last experience with this nonprofit?
2011
I have seen the drive of the founders of Arizona Myeloma Network. Through the trials and tribulations that Jack and Barbara went thru many years ago battling Jack's multiple Myeloma. They saw how difficult it is to find the correct information, doctors, treatment and what new discoveries are being made to cure this cancer. They realized that new patients need help to quickly locate these resorces. AzMn is now achieving that goal by providing conferences each year to bring patient and a world class staff fo Doctors and Researchs together.
Videos
Dr Keith Stewart - 2011 Arizona Myeloma Network- Myeloma Research
The Great!
I've personally experienced the results of this organization in...
Seeing the new patients eagerly asking doctors specific questions concerning their needs.
Ways to make it better...
If I had to make changes to this organization, I would...
Bless them with more Grants
More feedback...
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?
2011
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