Our Crowdfunding Groups
MY STORY
My name is Greg Cohen. I am a Scleroderma Warrior. Scleroderma is a rare autoimmune disease that is most often diagnosed in women and less so in men. It is translated to mean “hard skin.” In the summer of 2014, I started noticing my first symptoms of scleroderma. I experienced numbness, and a swollen feeling in my hands even without the appearance of swelling. One Sunday while I was going into work, I decided to go into urgent care because I couldn’t feel my left hand at all.
I was told I had bilateral carpal tunnel, which didn’t seem right because I don’t typically work at a computer. I then went to a rheumatologist who diagnosed me with Hashimoto’s. Soon after, I began experiencing painful digital ulcers and my wife urged me to return to the doctor. After three years of symptoms, I was officially diagnosed in April of 2017 with limited systemic scleroderma.
I never considered myself to be much of a runner, but I have always had a passion for fitness. I was a competitive NCAA Division I wrestler, I enjoy CrossFit, and work for a nationally acclaimed fitness company.
After receiving my diagnosis, I was devastated, I was depressed and cried for a few days thinking the worst, thinking I would not be able to do the fitness things I loved. My wife finally told me I had until the end of the week to stop feeling sorry for myself and do something and not let the disease consume me. Instead of wallowing, I decided to be a force to empower others, to inspire, and most of all help lead the charge for awareness and fundraising for this awful disease.
I decided to sign up for the 2018 LA marathon. I fundraised from friends, family and strangers and ended up raising over $5,500 for scleroderma. I ran the 26.2 miles as a patient, and an advocate to fight this disease. After 2018, I successfully completed my second run in the LA marathon since my diagnosis, living up to my plan to run the marathon each year from now on. This time the LA Times caught the attention of fellow patients lining the streets of Los Angeles cheering me on.
OUR GOALS
Seeing the benefits of this, I decided to go even further. Instead of a fundraiser for one single marathon, 2020 includes a new feat. My goal is to run 4 marathons, each under 4 hours, across the country to bring awareness to Scleroderma and raise no less than $10,000 . The plan is to run Walt Disney Florida in January, Los Angeles in March, San Francisco in July, and end the journey in Philadelphia in November. Along with my amazing care team at UCLA consisting of Dr. Elizabeth Volkmann and UCLA Health, we are going to raise money to direct it for research just for Scleroderma.
My goals do not stop with scleroderma! I use fitness to keep myself mentally and physically healthy, and to inspire others with my dedication to health. With support from friends and family, I recently returned to school and have earned my Master’s in Public Health with a focus in Lifestyle Management from Loma Linda University. I refuse to let Scleroderma to define me. My motto is simple…"Just Keep Moving."
ABOUT DR. ELIZABETH VOLKMANN'S RESEARCH
Gastrointestinal (GI) tract problems are common in systemic sclerosis (SSc) and affect most patients with this disease. Lower GI problems, such as belly pain, bloating/gas, diarrhea, and constipation, can have a large impact on quality of life, and can lead to death in severe cases. In this proposal, Dr. Volkmann and her team at UCLA will discover whether specific bacteria contribute to GI symptoms, and how both symptoms and bacteria are related to poor lower GI function.
To accomplish this goal, the investigators will measure how food moves through the lower GI tract of SSc patients using a whole gut transit study, which is done by radiology and counts the time it takes for food to move from one part of the gut to the next. They will collect a stool sample from each patient and determine the exact types of bacteria present through genetic sequencing. Patients will also fill out surveys about their GI symptoms and their dietary habits. Statistical tests will then be used to determine whether there is a difference in symptoms and the bacteria in stool between patients with and without lower GI problems. These studies will help us to better understand the cause of GI problems in SSc, identify new treatments for improving GI symptoms, and also to understand how diet affects the GI microbiome in patients with SSc.
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