Meet Todd Warner
Updated: Sep 23
My name is Todd Warner. I live in Oregon with my beautiful wife, Melissa.
I used to know exactly who I was, what I wanted, and how to get it.
These are the things that I wanted:
Higher education. I got one. I'm thankful for the wisdom.
A meaningful relationship. In a month, Melissa and I will celebrate our twenty-first wedding anniversary. We are grateful.
Good job. I've had several. I am fortunate to be well respected and have a thriving career.
Nice house. We have owned several.
Boat. I got one. We owned two.
I once would wake up before dawn and ride my mountain bike more than 120 miles before coming home at dusk covered in mud. It was an incredible experience!
Hiking, biking, skiing, boating, and motorcycle riding were things I enjoyed regularly.
I struggled with work-life balance. I wanted it all, but I got that sorted out as I matured and discovered that money wasn’t everything.
In the early 2010s, I realized my body wasn’t keeping up with my mind's desire to increase my physical activity. Melissa and I worked hard to spend more time in the great outdoors despite the decrease in my strength. I thought that doing more physical activities would reverse my decline in health. I was wrong.
We pressed forward. My wife and I continued exploring the Pacific Northwest's mountainous regions.
We rode our bikes. We kayaked and played golf and went out on our boat every chance. I even tried to get her to go skiing with me (she didn’t enjoy it like I did), but we had fun together being active.
Then, in 2012, I had a nasty skiing accident that messed me up. Perhaps Melissa was on to something... was I overdoing it?
My physical issues were attributed to my skiing accident and aging. After several injections and back surgery, my body continued to lose strength. I knew something was wrong.
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Every donation moves us closer to finding a cure for VCP disease.
Over the next few years, I saw a variety of doctors. I complained of weakness and numbness in my legs. After numerous nerve studies, the doctors concluded that I was fine and advised me to live my life. So I did, well, at least I tried... and I still do!
I muddled along for several years, but my weakness worsened. I finally had enough and returned to seeing doctors, determined to resolve my back issues to move on with my life.
After being passed on from doctor to doctor and losing hope, I finally saw a doctor who looked at an old MRI image from before my back surgery. She accidentally scrolled up on the image and noticed something odd. She locked her computer and ran out of the room, telling me she needed to talk to her boss.
Well, that can’t be good…
She finally came back with her boss. She told me that I did indeed have an issue. They didn’t know what it was, nor could they help me. It was outside of their specialty. All they could do was refer me to a neurologist they thought could help.
We finally met with the referred doctor, which seemed like an eternity. He was skeptical after a brief discussion and reading my medical notes. Then he asked me to do something very simple. He asked me to sit on the floor with my legs crossed, which I did. Then he asked me to stand up. After watching me struggle, he said, “Yeah, you have a problem.”
Finally, I saw someone who took me seriously and didn’t think I was crazy!
Finally, I met with a doctor who didn’t think I was crazy and took the time to conduct a series of complex exams. I confess that I was electrocuted for what felt like an eternity for nerve and muscle tests; my back was not the problem. He decided that I needed a genetic test to confirm his suspicions.
I was diagnosed with an ultra-rare disease Valosin Containing Protein (VCP) disease.
Who am I now?
I’m a 46-year-old man with a rare disease who probably won’t live to collect social security. I love my wife, and we have our priorities in order. I am also committed to finding treatments and a cure for VCP disease.
The one bright spot about who I am now is that I'’m not crazy... some might disagree, but at least I have the answers to the questions I had for so long... about why I was becoming weaker while trying so hard to increase my physical fitness level. All the activity
I focused so heavily on was hurting me. Yikes!
I’ve learned that I’m not alone in my journey. Over 1,000 people like me are impacted by this super rare genetic disease that affects our muscles, bones, and brain. There is no treatment or cure. Our muscles are dying. They no longer recover after exercise... this disease impacts our skeletal muscles, heart, and lungs, and then…
Everyone with this disease progresses differently.
Melissa and I have worked incredibly hard to simplify our lives.
We have downsized our home to a smaller, more manageable one that accommodates my physical disabilities. We have sold the boat and truck and have cleaned out everything we don’t need.
I have also been forced to give up my career, which I loved and has provided so much. I am currently working through the process of going on disability. My new career is filing paperwork for my disability insurance. Fun stuff.
Who I am now is a person who wants to focus on what’s important... my health, my family, my security, and my independence for as long as I have it. I also want to make a difference.
So, who will I be going forward? I want to be someone who spends more time with friends and family. I want to use my time and resources to help people like me find treatments and a cure for VCP disease.
I want to be cured… I want us all to be cured!
Melissa and I have partnered with the Cure VCP Disease organization and invite you to join us. To learn more about the disease and what the organization does, visit www.curevcp.org.
We ask for your generous support in making a financial contribution to help patients like me. The organization actively funds research, participates in studies, and works hard to find treatments and a cure. Together, we can find a cure!
Yours in Hope,
Husband, Brother, Professional, Former Athlete, VCP Disease Patient, Advocate, and Volunteer