Meet one of our Champions Award recipients for the month of April, Jenifer Raub. Jenifer is President of the Board for Summit for Stem Cell, Patient Advocate for Parkinson’s disease and a Patient Ambassador for Americans for Cures. She has testified as a Parkinson’s patient advocate to the FDA in support of iPSC and regenerative medicine. She is passionate in her efforts to support the research conducted at the Summit lab to find a patient specific stem cell therapy for Parkinson’s disease.
We spoke to Jenifer to learn more about her experience of living with Parkinson’s disease and what motivates her to do the amazing work she’s doing.
Q. Tell us about your personal story of being diagnosed with Parkinson’s, how did you feel?
I’ll never forget that sentence, “I think you have Parkinson’s.” It knocked the wind out of me. I was not ready for that sentence. I focused on the word, “think”. Maybe it was something else? For four long years I sought opinions from specialists. I had Lupus, I had an auto-immune issue of unknown origins, I had Fibro-Myalgia, I had depression, I had back issues and with a couple of “maybe it is Parkinson’s.” I did not receive definitive answers. It seemed depression was the most common diagnosis. I felt depressed. Who wouldn’t be depressed?I wasn’t well and I knew I needed help, but what kind? And most importantly, help for what? During those four years I withdrew from family and friends. I saw no one and I spoke to no one. I finally requested a DaTscan scan and with that my Parkinson’s diagnosis was confirmed. “Great.” I thought, “Now what? How do I make it through this?”
Q. How did you first get involved in being an advocate?
I have always been a proponent of stem cell research. I was fascinated by stem cell work in the ’80s and ’90s. Once I faced my Parkinson’s disease diagnosis, I started searching for a stem cell treatment. My husband and I found ourselves at Dr. Jeanne Loring’s lab for a presentation on Parkinson’s disease. We both had the same thought, “This is it. This is real.” We knew we had to help make this therapy available for everyone with Parkinson’s. We left the lab and began to plan our first fundraiser for Dr. Loring’s autologous dopamine neuron replacement therapy for Parkinson’s disease.
Q. Why is the patient’s voice important in medical research advocacy?
I feel there can be a perceptive disconnect between the cells in a lab and the source of those cells: a real person with a family. I feel a patient’s voice is important in all capacities because it brings the whole picture into focus.
Q. Can you describe your experiences as a patient advocate? What’s challenging about the work? What’s rewarding?
I have never been comfortable as a public speaker. I have never wanted any focus placed on me. However, in spite of that discomfort, I am passionately determined to see this therapy for Parkinson’s disease become a viable option for all persons with Parkinson’s disease. I am determined to do whatever is necessary to educate and raise awareness not only about this research project’s potential for Parkinson’s disease but, for all stem cell-based therapies.
It’s all challenging. I think the hardest thing for me is “talking” to the hundreds of persons who call and want help. People who are depressed and despondent. People who are watching their dreams fade away as Parkinson’s slowly steals their ability to function. I know exactly how they feel.
I know exactly what I find the most rewarding. That moment when I’m talking to person with Parkinson’s. A person who is usually hunched over, sad, despondent—it’s like the light in their eyes is out. Then, as I explain the research to them, they stand straighter, they brighten up—the light comes back into their eyes. They realize there is “real” stem cell-based research that could meet their needs. And, it is relatively close to becoming a reality.
Q. Can you point to a specific moment where you feel you’ve had a positive impact on someone?
After speaking to someone about autologous stem cell-based dopamine neuron replacement therapy, they thank me and tell me they feel better about having Parkinson’s disease. That they feel like they have a reason to survive rather than to simply exist with a progressive neurological disease. They engage again with their lives. There is hope for a solution in the very near future.
Q. What’s your argument to lawmakers for investing in medical research into Parkinson’s?
I don’t think I have an argument. I think I have more of a request. The accepted standard of care for people with Parkinson’s disease (and other diseases) is intolerable. The current climate for scientific growth shackles researchers. The obstacles need to be streamlined. Yes, patient safety should always the priority, but honestly for any project to make it from bench to bedside is extremely difficult. Current medical treatment does not meet the needs of those struggling with a disease like Parkinson’s. Lawmakers need to act on making a change to streamline the process to keep up with the exponential growth in the lab. The current process is too slow.
Q. What’s the thing most people don’t understand about Parkinson’s as a disease?
Most people don’t realize how many people have Parkinson’s disease. More people have Parkinson’s disease than Lou Gehrig’s, Multiple Sclerosis and Muscular Dystrophy combined.
Q. What about stem cell research gets you excited?
The reality of getting stem cell-based research out of the lab and into the clinic. Doing so will help millions with Parkinson’s and profoundly change medicine as we know it by answering the unmet needs of what are currently incurable diseases.