My Nonprofit Reviews
Kym O.
Review for Neuroendocrine Cancer Awareness Network Inc, Fort Mill, SC, USA
When I was diagnosed with a NeuroEndocrine tumor in my lungs four years ago, like everyone else, my husband and I had never even heard of this rare cancer. We felt so lost, and alone. Where were the pink ribbons and races for family & friends to show their support, for us to find support and most importantly - accurate information to keep me ALIVE?
I had been given less than 30 days to live - my children were only 5 and 11 years old! My husband and I were on a deserted island and the water was rising quickly --- then an amazing woman named Maryann Wahmann entered my life - a NET cancer patient herself and the founder/president of NCAN. She spent an HOUR on the phone with me, teaching me about my disease, telling me where I could find specialists who knew how to treat me, assuring me that we were not alone, and there WERE things I could do! The phone call that started in hopeless tears finished in laughter and tears of joy, purpose and relief.
Within days, I received a huge packet of information and even zebra print advocacy bracelets (don't underestimate how much these mean). My husband and I cried and clutched that information packet like the life-saving treasure it was. NCAN asked for nothing, and gave me everything.
WIthin a year of my diagnosis, not only was I ALIVE and doing great, I had also started a support group for other lung NET (aka Lungnoid) patients and their caretakers (Lovable Lungnoids). Maryann and NCAN partnered with NET specialist Dr. Eric Liu, and Lovable Lungnoids, and gave us the worlds first lungnoid conference! NCAN did all the work, got all the funding, hosted an incredible event and allowed me to have my support group's name be part of it all. They flew world NET experts in from Sweden (!!!) and arranged for 125 patients to come together for an incredible weekend of support, information and encouragement like never before in history. We got to see not one but TWO NET specialists together in clinic visits in the days before the conference. MANY lives were saved with that one week, and without NCAN, none of it would have been possible. To top it off, NCAN was able to donate 10k to NET cure research as part of our gathering. The cost to attendees? $20 including a delicious healthy breakfast ~and~ lunch. Incredible.
Heartfelt thanks, Maryann, Bob, Tricia, Tom and everyone at NCAN for all you do and for being the first organization to recognize and help the lungnoid community (now 1500 members strong). You're the best!
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?
2016
Review for Neuroendocrine Cancer Awareness Network Inc, Fort Mill, SC, USA
CCAN is such an amazingly helpful & important nonprofit! Cases of carcinoid cancer increase daily yet so little is known about this unpredictable disease. As a patient, my misdiagnosis of cancer for nearly a DECADE and doctors with grossly outdated knowledge, is sadly the common experience. Even after carcinoid is confirmed, most don't know what to do so they treat it like other more commonly understood cancers - which can be deadly to carcinoid patients. CCAN's work reaches far across the realm of carcinoid....24 hour patient & caretaker hotlines, free mailed info packets, support group funding, social media awareness, educating patient, public, pharma, and medical teams through innovative seminars and dozens of conferences each year. CCAN also coordinates large donations toward research by working with pharma. There is no CEO or other salary here, CCAN is actually a very special family dealing with carcinoid cancer themselves and working passionately to bring awareness, help and HOPE to thousands every year.
More Feedback
If I had to make changes to this organization, I would...
Create unlimited funding for all they do!
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?
2014
Review for Alabama Pug Rescue And Adoption Inc, Westover, AL, USA
Pugs are such adorable, sweet and fabulously snorty little companions! You'd think nobody would be capable of harming or neglecting them. Sadly, that's not the case. Abused and lost pugs are brought in on a daily basis - most of them requiring a daunting amount of medical care, time, and nurturing. Many folks wouldn't consider a dog worth such an investment. But if you're an animal lover, you see something different. You see a wounded angel covered in fur and wrinkles. An innocent and infinitely forgiving forever friend. A loyal love worth saving.
Enter Alabama Pug Rescue & Adoption (aka "APRA"), where a team of loving foster families are led by one incredibly dedicated woman, Pam Mays. I first met Pam about two years ago, when a friend on Facebook shared an astonishing "before & after" picture of a pug named, "Ten". In his before picture, Ten's had an oversized head with bulging, heartbroken eyes. His body was unnaturally tiny, withered from starvation, devoid of any fur, and covered in blackened mange and open sores. But his eyes still held the question, "Will you love me?"
Pam answered that question by taking Ten into her own home, and devoting hours every day to saving his life. They weren't sure if he would even survive, but she was at least going to make sure he had every fighting chance, and that he would be surrounded by a sea of love. She nursed his body back to health and his spirit back to joy, singing Sinatra to him and cradling him her arms in between her "real" job that pays the bills.
Within just a few months, Ten looked like he'd been a pampered pooch his entire life! He was entered into a pet rescue contest sponsored by Purina - the prize being something like a year's worth of pet food (a huge blessing to any rescue group). An APRA volunteer made a video of Ten's before & after pictures and folks from all over the world were inspired to vote for him! You can still see it on Youtube: http://www.youtube.com/watch?v=gkPI-0V6fLo
Today my family and I are the very grateful guardians of this sweet boy. We couldn't imagine life without our beloved Tenny! I've been through serious medical issues including carcinoid lung cancer and lobectomy surgery, and Ten has an uncanny ability to know when and where I'm hurting. He seeks me out and very gently places himself right where I'm hurting. I have no doubt he knows exactly what he's doing. He brings healing, peace, companionship and pure joy to our entire family with his daily antics and sweet spirit. And as wonderful as he is, we hear the same from every other adoptive family who has fallen in love with pugs. Pugs are truly special!
Supporting APRA means your entire donation is put to very careful use. This is an entirely volunteer-based, non-profit group. Donations go to basics like food, medicine, and medical treatment which has been carefully and frugally negotiated with a caring veterinarian. APRA is often forced to turn away pugs just like Ten...simply because the resources and funds aren't there. Pugs are taken in every single week, foster homes are overflowing with rescues, and donations are desperately needed for APRA to continue doing this very important work of rescue, adoption, and advocacy.
Heartfelt thanks to Pam and the entire APRA team for this wonderful life work and truly making a difference in this world! I hope others will be inspired to give generously to this very worthy cause! xoxo
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
Review for Neuroendocrine Cancer Awareness Network Inc, Fort Mill, SC, USA
Being diagnosed with carcinoid cancer is unlike facing other cancers....there are no familiar ribbons, rallies or races for support and connection. Most doctors misunderstand carcinoid and even the cancer.gov and American Cancer Society websites give dangerously inaccurate information!
Thank God for CCAN! Despite being a small organization, they continue to achieve incredible results with things like their free hotline where you can talk directly with an experienced patient/caretaker team, wonderful information packets mailed upon request, helping nationwide carcinoid support groups, and doing so many other things nobody else does for carcinoid cancer patients!
I'm a lung carcinoid cancer (aka "lungnoid") survivor who started a facebook support group and wanted to work with my wonderful carcinoid oncologist (Dr. Eric Liu) to hold the first-ever lungnoid conference. Lung carcinoid is even more rare and there is VERY little support for us. No profit to be made from us. But CCAN stepped in, and not only funded and produced an AMAZING, history-making Lungnoid Conference at Vanderbilt University in Nashville (April 2013), they paid for the only lungnoid expert in the world, Dr. Dan Granberg, to come in all the way from Sweden!
CCAN made it possible for Dr. Granberg to see patients in Nashville for an entire week, then help more than 100 attendees at the Lungnoid Conference with his presentation and interactive Q & A session. For twenty dollars, attendees received not only a full-day conference devoted just to lung carcinoid and the opportunity to learn from and interact with a team of caring experts, but a lovely breakfast AND lunch, beautiful advocacy messenger bag filled with information and awareness goodies, a spiral-bound notebook with all the Powerpoint slides from every presentation at the conference, and most importantly, a chance to connect with others facing this unique and lonely cancer.
CCAN does not have a corporate staff making large salaries. This is a FAMILY doing all these amazing things. A family with a mom who got carcinoid cancer and decided that nobody else would face the struggles alone like she had. That mom is Maryann Wahmann and she has singlehandedly changed the face of carcinoid cancer with her amazing determination, energetic personality, and compassionate spirit.
Making a donation to CCAN isn't going to line the pocket of a salaried employee, it's going to pay for printing costs and stamps for packets to be shipped out weekly to newly diagnosed patients, for conferences to educate patients as well as medical communities, for advocacy and awareness (did you know CCAN is responsible for the zebra-stripe cancer ribbon for carcinoid?) - for things that really matter and truly make a diference for every carcinoid cancer patient and anyone who cares about them.
Thank you, CCAN, for being the family and face of carcinoid awareness, for helping to educate the world that carcinoid IS cancer, and that nobody facing it is ever alone! xoxo :)
More Feedback
Was your donation impactful?
Definitely
How likely is it that you would recommend that a friend donate to this group?
Definitely
How likely are you to donate to this group again?
Definitely
When was your last experience with this nonprofit?
2013
