Tell us about your entrepreneurial product or service.
Patients for Clinical Research seeks to create and implement programs to educate patients, patient groups, researchers, and medical providers on clinical research. Our mission is to make clinical research accessible to all who can benefit from or participate in the research process.
Our vision: To use digital technology to educate and enable everyone across the globe on how to access and participate in clinical research anywhere, anytime.
We are a team of patients who, with the support and assistance of a wide array of industry and research experts, have banded together to help pharma research put the human back into research into the conditions and diseases that impact the quality and quantity of human life.
We have no borders. Our only mission is to get all the players at the same table.
What inspired you to launch your business idea?
I developed a Rare Disorder in 2001 at 31 years old. It took me 4+ years and 51 specialist consults to be handed a Medline study & told to find the neurosurgeon that reformed the study. This neurosurgeon correctly diagnosed my Cranial Nerve Disorder & I had 99.99% successful Microvascular Decompression Surgery. Even with dangerous complications, I didn’t care my ears no longer felt like they were being stabbed by ice picks 24/7. At my post surgical appointment everything was great. I had returned to work and was back to my workout schedule and had hope for the future once more. My only complaint was neck pain. I thought I had been working too much. My neurosurgeon took an xray then a MRI to make sure & I drove home 6 hrs. away. The next day he called me while I was driving & asked me to pull over. THis told me I had a severe Chiari Malformation and was about to become a quadriplegic. I had to get back to Pittsburgh for 16 hr. emergency Chiari & C Spine surgeries. That was the point my life forever changed. My Rare Disorder Journey has been & still is more difficult than most will ever be able to comprehend. I live with multiple Rare Disorders daily and severe chronic pain, but I refuse to let it define me and my life. I did though have to turn my personal situation into something positive for humanity & help others not have as difficult a path as I stumbled alone for too long.
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I was a panelist at Patients at the Center of Clinical Research.” This workshop planted a seed for Patients For Clinical Research.
What problem does your business or organization solve?
Patients for Clinical Research is a solution to many problems in the Clinical Research Process.
Our calling and vision is to develop strategies, and to create a patient education platform.
We’re also working to build a clearinghouse and connection portal for patients, doctors, researchers, scientists, govt agencies and clinical research organizations to connect to create and implement patient-driven/patient-centered clinical trials.
Our work will ensure patients become the nucleus of clinical research.
What has been your biggest challenge as an entrepreneur and how are you working to overcome it?
Patients For Clinical Research opened as a corporation on recommendation from our attorney, accountant, advisors and the IRS. The backlog in the IRS Charity Department for 501(c)3 Public Charities has an approval decision time of 9+months with an expedition consideration request. We are in the process of becoming a B Corporation or social conscious corporation and applying for 501(C)3 status.
That makes PFCR unavailable for most grants.
Give us one word that people might use to describe you.
How has Project Eve helped you and/or your business?
Project Eve has helped me with encouraging and educating articles and inspirational Member Stories & Struggles. I look forward to every Tweet.
Thank you for bringing strong businesswomen together.
I also use information I learn on Project Eve in business decisions for PFCR.
Give us an insider tip that relates to your industry or startup story.
Major positive implementations are coming down the Clinical Research pipeline. They will benefit all patients and humanity. Technology builds on technology. Please always protect and respect your health. It can change before you realize. Truly understand your health insurance policy and call your insurer if you have any questions & take nothing for granted. Even if you are insured 60% of all bankruptcies are because of medical bills. If diagnosed with a chronic illness do the research, become a specialist in your illness. Do not assume your physician knows everything about your illness. Be your own patient advocate. Become an EPatient. Go to clinicaltrials.gov & contact me. No one should be sick and feel alone & scared. Never Give Up! Never Give Up No Matter How Sick you are or How Difficult things get. Your life could depend on it as mine did and does. Keep Hope Alive. Reach down deep inside and fight like you never knew you could. Life is a gift and very precious.
Company: Patients For Clinical Research
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