Our dear friend Derek Dorsey needs our help

Hi all, My name is Evan Weiss. I met Derek Dorsey in the mid-90's when lived in the same apartment building in Manayunk, Philadelphia. Like most I was drawn in by Derek's warm personality, great sense of humor, and beaming smile. When I think of Derek, I think of his kindness, and his passion for music and cycling. He always lived life to the fullest. Now Derek needs our help.

Derek has been diagnosed with one of the rarest neurological diseases in the world. He was misdiagnosed three times during this dark journey and underwent endless testing, only to be in continuous excruciating pain with no identified source. First, Derek was told he had Parkinson’s; later with trigeminal neuralgia, in which they considered the situation so dire, they ordered two brain surgeries that would hopefully clear up the condition. After the first surgery was unsuccessful, his condition worsened. The neurologist explained his condition as “living in constant torture with his central nervous system moving thousands of times faster than normal.”

Derek has a rare bilateral small and large fiber peripheral neuropathy which has never been seen before.

 

A group of the world's top neurologists are now treating Derek for this rare case of extreme hyperexcitability at Harvard Mass. General Hospital, the Mayo Clinic in Minnesota, the Jefferson Neurosciences Center, and John Hopkins Medical Center.

Derek's medical team is led by Dr. Annie Oaklander. She leads a renowned team of neurologists now working on what is to be called "Derek Dorsey Disease"

- Anne Louise Oaklander M.D., PhD, Associate Professor of Neurology at Harvard Medical School and Assistant in Pathology (Neuropathology) at the Massachusetts General Hospital

-Mariano Dalakas M.D., Chief of Neuroscience at Jefferson Hospital and

- David R Lynch , MD, PhD, UPENN, Professor of Neurology

- Amanda C Peltier MD, MS Associate Professor of Neurology and Medicine Vanderbilt University

- Anh Thu Vu M.D. Assistant Professor of Neurology at Drexel University College of Medicine.

- Nethra S Ankam MD Physiatrist in Philadelphia, Pennsylvania and is affiliated with Jefferson Health-Thomas Jefferson University Hospitals

- Martin Cheatle PhD, Director, Behavioral Medicine - Penn Pain Medicine Center

 - Nethra S Ankam MD, Jefferson University, Physical Medicine and Rehabilitation

Unfortunately, on the medical front, it has been nothing but bad news. At this point, it is how can we halt or manage this rapid progression.

  

Not only will funds raised help Derek with his substantial medical bills but also it will allow him to purchase critical pain management creams, ointments & meds that will help him try to cope with the immense pain.

 

Also monies will go towards his new foundation, “We Live On.” The foundation aims to create a space for people with rare diseases to network and provide information on services and providers available. We Live On strives to create that safe community space as rare diseases are isolating and often end in suicide rather than death by disease. Most importantly, the foundation will serve its community of individuals and families facing medical adversity, establishing that you are not alone and that there is hope.

 

100% of net proceeds will benefit Derek Dorsey, his medical bills, and his foundation.

 

Any amount of $ will help Derek. No amount is too small. THANK YOU!!!

...For as long as I can remember, Derek Dorsey has always treated me like a somebody. He treats everyone like a somebody. If there was a bill he could put me on, no matter if the other bands were 10 times more popular, he put me on it. He roots for the underdog. He believes in people. And right now, he could use some hope. Let’s show Derek how much we believe in him." - Chelsea Mitchell, Dirty Dollhouse Music

PHOTO CREDIT: JESSICA EMGE