Not Without a Fight – Together We Are Strong!
A call to advocacy
It was during this time I truly believe I was being formed into the advocate I am today. I gained an education about hep C through any published article I could get my hands on. I worked and worked hard to get a full understanding of what took my mother’s life and what I was bound and determined to beat. Boy did I shed light on that really quickly.
As a family, we brushed off certain things and blamed her condition fully on her immune-suppressants she took after her kidney transplant. Don’t get me wrong, those drugs can be harsh and can cause issues after a long time. However, not until learning exactly how much hep C does to the body, the organs, the lymph system, the skeletal and the nervous system, did we fully grasp the chaos she was fighting.
I tried to find and meet “someone”, “anyone” with hepatitis c, but I couldn’t find anyone willing to come out. I longed to talk with another person fighting hep c for they would be able to fully understand and say they “get it”. Instead of “oh, it will get better honey,” and it never did. Sadly, hep C doesn’t get better until treated and cured.
Looking to connect with others who understood
I joined Facebook and sought out the others in the very early days of hep C. Every hep C group I came to was complaining and nothing but a pity party scene. I went to these groups for uplifting support but left feeling despair and drained.
Being the entrepreneur that I am, I started reading and calling every professional I could about how to go about starting a 501C nonprofit. I literally spent four long, grueling years preparing to launch my foundation properly before actually obtaining our license in 2013. I fought through one closed door after another. I am the type person that if you give me a challenge and I won’t stop until I reach my goal. Sitting out at my mother’s grave with the letter giving us the status of 501C, I know she was smiling down and saying “We did it, girl”.
I had a very dear close friend who I met on Facebook. After we finally met in person (her husband was also fighting hep C and needed a lifesaving transplant), we brainstormed. I had already been working on the copy right to “NOT WITHOUT A FIGHT! ~HCV~” © as those were the last words spoken to me by my mom before she passed away. This became the Foundation’s core mission and belief. I wasn’t going to have any negativity tied to me or my Foundation. This disease already has enough negativity surrounding it and I always share this with people and my blogs. “Don’t give it any more power over you”. We stand strong and fight. That along with my friend’s family motto we made.
Honoring my mother’s fight against hep C
During the formation of the Foundation, I had no doubt I wanted to name after my mother, Bonnie. The Foundation became The Bonnie Morgan Foundation for HCV.
Our preparation time involved countless hours of skype chats together, keeping in mind the time difference was 2 hours, my partner on the east coast and me in Denver. Back then there were only a handful of foundations out there for hep C. I wanted to make sure that my idea and direction was set apart from anything anyone else was doing. All the idea’s, direction and vision for this foundation was based purely on the two of us.
About this time the news media got a hold of my story and it exploded with countless interviews, cross-country flights to appear on programs featuring hepatitis C. Back then not many were willing to put their face out there and say “I have hep C” so to the news media this was huge.
Spreading hope and awareness
They were promoting our Foundation and we still yet had to get our web page together. It took us until the early morning hours the night before I was to go live with my story to put this website up and have it fully running. Together, we did this and prayed daily that it would be sufficient enough to get by for the time being.
After the airing of the broadcast, both of our phones were going off. People calling us to talk about hep C, feeling like I had been feeling 3 years earlier, just wanting to talk with another person who had it. Keep in mind, I still was running 3 companies and had my family. My partner had a sick husband on the transplant list and her family as well. We kept this up for about a month before realizing we needed help and we need a place for these people to go and get support. That is when we created an online POSITIVE support group for hepatitis C patients…Hepatitis C from A to Z. It was the first of 12 groups our Foundation sponsored to help those fighting hep C. This group was a private support group for anyone with hep C, or caregiver, friends. We strictly enforced the positive nature in this group and it took off.
Recognizing what others are going through
We kept moving forward creating new support as the need arose. Today I am honored and proud to say I think we covered every angle of this disease. We have our A to Z group, Treating hep C (a group for those in or about to go on treatment), Brain Fog (or fthose fighting hepatic encephalopathy), Late Stage hep C (for those only in end stage), Kids Corner (a group for families with children with hep C), Post Treatment (a group for those cured and moving on past hep C), Living Kitchen (a group for those wanting to eat a liver-friendly diet), Positive Quotes for Hep C (again here is where we post up lifting quotes of support), and lastly our important group for those Caregivers (we know how hard it is to care for us with hep C)). I have been blessed with an amazing team now that monitors, screens, and guides those through their fight. Everyone with our foundation either has/had hep C, is a caregiver or has children with hep C. We come with personal experience and don’t feed with false pretenses. We share as it is through our own fight and victory.
As you can see we have a variety and all sponsored by The Bonnie Morgan Foundation for HCV. This was an immediate way WE as a foundation could reach people in rural faraway places immediately. We also travel across the United States putting a face to hep C.
Our journey continues
It has been quite the journey and FIGHT the last 5 years with building The Bonnie Morgan Foundation for HCV. The most memorable times are going to liver walks across the country setting up our booth and at town fairs in small rural communities. It is during these events I am blessed to meet a variety of people from all walks of life asking about hep C.
It is the family that comes up to the booth asking for information about their mother who is fighting hep C. The teenager who is afraid to tell their parents they’ve been exposed to unsterile IV drug needles. It is the retired veteran that learned he was newly diagnosed. The fear, the uncertainty and questions are real and the same. It does NOT matter how one contracted Hepatitis C the outcome is the same. Everyone still gets that paper stating positive and then the countless number of doctor visits and blood draws. And then the dreadful WAIT.
I wish I had the answers to all the those asking when will they get their cure. If it was up to me and if my foundation had the financial means to make it happen, EVERYONE today would be getting their treatment to end this nightmare.
A foundation with a mission
The primary goal as I stated earlier is to create a positive, educational space for those fighting such a negative disease. We want to raise enough funds to be able to help with co-pays and get on treatment. We will continue to raise awareness and raise funds for those fighting hep C. We have done amazing work out in the hepatitis C community with helping those who need medical equipment because of their end stage liver disease also providing educational material to those just starting this journey and most importantly offering that positive push to GET TESTED.
Sure, I wish the foundation could be this huge company able to eliminate all the suffering around the world. I stay focused and I stay driven in my visions of this foundation. And being the go-getter I am, I will continue to research and give those in need my ear, my support, and my positive encouragement to beat their dragon. My team is dedicated, passionate, and so supportive of this Foundation’s mission. I truly am blessed to be where I am. I thank my mentors who first shared their journey way back in the early days. It was because of you and your fight, I am here…Thank you. To those whose battle was cut short, may our fight continue on to honor you.
Not without a fight
This journey did not start on purpose, but once it started, it will not finish until the end. I have always stated that I have come to that finish line and so blessed to be CURED, however, it is my personal mission to not cross that finish line until the last person is cured of hep C!
“NOT without a FIGHT! ~ HCV ~ ” © TOGETHER we are STRONG.
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