Patients are the reason we do what we do.

Patient Testimony and Panel:

Greg Garcia went up a mountain planning to ski down with this family. That is not exactly how it worked out. Hear about Greg’s experience with Myocarditis and his journey back to health.

Rachael Castillo is living with Nephrotic Syndrome, which  is a disease that effects the kidneys. Unfortunately I was misdiagnosed with lupus so did not receive proper treatment for my condition for 15 years. Advanced stages of Nephrotic Syndrome, which is what I have, resulted in a kidney transplant in 2018.

Michelle Lott lives with two chronic diseases.  Cervical dystonia, which is a rare neurological disorder, and hypermobility which is common however frequently mis-diagnosed.  These two conditions exacerbate each other.  

 

Matthew Nelson, first and foremost, is a father to two wonderful daughters and a husband to a fantastically talented wife. Throughout his career, Matt has held roles in the support of science, mostly in the neuroscience field and as luck would have it, has worked at Barrow Neurological Institute as a research operation manager for last 11 years. In February of 2016, Matt came home with facial numbness and didn’t think much of it. After a visit to urgent care, the ER a neurologist and finally an MRI, he was diagnosed with relapse remitting MS. He has been on disease modifying therapy ever since. This therapy is designed to inhibit my immune cells that are thought to target the neuronal myelin, from leaving the lymphatic system.

Julie Hoffman is her daughter’s #1 fan and an active patient advocate helping to navigate the challenging journey of living with autoimmune diseases.

Pat Elliott is a two time cancer survivor, at age 35 she was treated via traditional treatment for breast cancer at a time when it wasn’t discussed in public and there was little patient support. In 2009 she was diagnosed with a rare cancer, Chronic Myeloid Leukemia, which used to be a death sentence for most patients. She was treated with an oral targeted therapy which was the fastest drug ever approved by the FDA and is considered by many as the closest thing we have to a cure for cancer. Today, thanks to technology, Pat has a global support network that includes patients and physicians around the world and can immediately access clinical research to stay on top of her condition. 

In 1991, Lee Stein was diagnosed with a Brain Aneurysm which bled.  It was inoperable as it was diagnosed to have clotted between the MRI and the angiogram. The radiology was deemed so unusual that his case was published in The Journal of Surgical Radiolgy in 1997.  The authors were the chief of Radiology and the Chief of Neurology and the selected neuro surgeon.  But, did they get it right?  Lee founded a medical device company that uses AI to diagnose postural abnormalities. He lives in San Diego, serves on many boards and is the former attorney for Richard Branson. His website is www. Stein.to 

A Life-Changing Prognosis of Uveal Melanoma: Kevin's Story

After being diagnosed with uveal (or ocular) melanoma, Kevin was directed to explore the benefits and indications of Castle Biosciences' DecisionDx®-UM gene expression profile (GEP) test, which predicts a patient’s risk based upon their tumor’s own unique biology. The findings of the test, Kevin says, "were of huge importance to myself and my family. They put me at rest and we could all move on. The Castle uveal melanoma prognostic platform can truly be life-changing."

Helping Patients Heal: Mary's Story

A patient’s experience: Ms. Mary Nametka, MSN,DNP(c),CWS,CWON,CFCS,ME, FNP-BC.

Mary is an advanced practice nurse and patient who needed carpal tunnel surgery.  She shares her experience  with Provant Therapy from Regenesis Biomedical and how it helped her recover after surgery.  

Cancer Genomic Testing: Jennifer's Story

Comprehensive genomic profiling (CGP) is a method of cancer genomic testing used to reveal a cancer tumour’s unique “fingerprint” – in other words, the unique set of mutations within the cancer’s DNA which determine how the tumour behaves and grows. Here, Jennifer Cole and her oncologist, Dr Jeffrey Rothenstein, discuss how the insights from CGP helped guide Jennifer’s treatment plan and enabled them to find a therapy personalised to her tumour’s unique genomic profile. To learn more visit Roche.com

Living with SMA: Madi's Story

Madison "Madi" Wolff was a typical developing baby until about 10 months old when she was unable to crawl, sit up and bear weight on her legs. Her parents got concerned by month 15 and took her to the doctor. After numerous tests were negative, Madi was  diagnosed with Spinal Muscular Atrophy(SMA)  Type 2 just before her 2nd birthday.

SMA is a genetic neuromuscular disease that doesn’t allow the nerve cells to innervate the muscles causing them to be weaker than usual. SMA is the #1 genetic killer of children under the age of 2 with Type 1 being the most severe. In 2021, the Arizona legislature expanded the state's Newborn Screening program. Babies in Arizona will soon be screened for SMA shortly after birth providing for earlier intervention and better outcomes. 

Living with Memory Impairment: Burt's Story

Despite memory concerns, hiker reaches new heights on the Arizona Trail

The famed Arizona Trail is 800 miles of desert, canyons, valleys and vistas that dissects the state north and south and is a test of true grit. For his journey on the demanding trail, 71-year old Burke, who was diagnosed with mild cognitive impairment, discovered that positive attitude was his best compass. (Learn more at  MayoClinic.org)

Finally, relief from a rare condition: Ellen's Story

Ellen Whitebird - After 24 years, Ellen finds relief from trigeminal neuralgia pain

For more than 20 years, the devastating daily pain of trigeminal neuralgia controlled Ellen Whitebird, depriving her of the joys in life and forcing her to become withdrawn. But with surgery at Mayo Clinic in Arizona, Ellen overcame the disease and is taking back control of her life.”  (Learn more at  MayoClinic.org)