“This is the first time we’re meeting,” said NMO clinician, Dr. Brian Weinshenker, during the 2010 NMO Patient Day hosted by The Guthy-Jackson Charitable Foundation.
He was referring to Pamela “Gracie” Mitchell, an NMO patient, co-founder/operator of Devic’s Support (now hosted on Spectrum) and a leading voice in the NMO community. It was a meeting long overdue.
It all started when Gracie was diagnosed with NMO in 2005. Known for her tenacious spirit and proactive drive, Gracie began researching NMO enforce. She began reading scientific papers, educating herself and set out to find expert NMO clinicians. During her research she found Dr. Weinshenker at the Mayo Clinic in Rochester, MN. She lived too far away to schedule an appointment so she began corresponding with him, but she had always hoped to meet him face to face. Fast forward to the 2010 NMO Patient Day.
NMO Patient Day was designed to offer NMO patients and loved ones the rare opportunity to engage in a dialogue with leading NMO clinicians and scientists worldwide. Attendees came from across the US to meet these experts in person. It was after an intense question-and-answer session, in which Dr. Weinshenker and seven other NMO clinicians participated, where he asked Gracie to join him in front of the audience. It was a surprise move to Gracie, but one that seamlessly fit the design of Patient Day. As Gracie made her way to Dr. Weinshenker, the crowd erupted in applause. It was the first time they had seen each other in person, fulfilling Gracie’s goal during Patient Day: to personally thank Dr. Weinshenker for his help over the past years.
“I got to really know you,” Dr. Weinshenker said to Gracie, “and we got to know each other through a series of emails you sent me and I realized that Gracie is really an incredible person; highly intelligent; very focused questions; highly eloquent. I’d especially like to acknowledge her leadership. I am pleased to meet her today and acknowledge all her efforts.”
His heartfelt acknowledgement resonated in the room as the crowd again erupted in applause as the two embraced.
After NMO Patient Day, we caught up with both, Gracie and Dr. Weinshenker, and asked them to reflect on their experience meeting each other for the first time at Patient Day.
Grace Mitchell on Brian Weinshenker, M.D.
Q: What role has Dr. Weinshenker played in your life relative to NMO?
Whenever I was diagnosed in 2005, I made up my mind to educate myself and to become a proactive patient. At the time, I knew that depending on anecdotal information from other patients was not going to give me the layman’s education that I needed, so I decided to go straight to the scholarly research. Almost every available paper at that time was out of the Mayo Clinic and Dr. Weinshenker’s name was on the majority of them. Dr. Weinshenker quite effectively gave me a crash course in NMO pathology via his many contributions to NMO research.
Q: What role does he continue to play?
Because I respect Dr. Weinshenker’s opinion and trust his judgment implicitly, he is the first person that I contact whenever I have questions about the pathology or treatment of NMO.
Q: When did you first communicate with Dr. Weinshenker?
If I am not mistaken, we have been communicating for around four years now.
Q: How often did you communicate with Dr. Weinshenker over the years?
Often. Still today I contact him whenever any question arises, and he always responds. I appreciate the fact that he never *dumbs down* the information that he gives me. I want to know as much as I can about the pathology and treatment of this disease. That includes the good, the bad and the ugly.
Q: How often do you still communicate with Dr. Weinshenker?
I contact him the minute that a question strikes me and send off an email that same day. Without fail he sends me an answer. He always takes the time to give me a detailed response.
Q: Had you ever talked to him on the phone or was it all over email?
Dr. Weinshenker and I have communicated over the phone in the past. What impressed me at that time was his genuine compassion for NMO patients. I have no doubt in my mind whatsoever, that he is involved in the research effort for all of the right reasons.
Q: Why didn’t you ever meet him in person before the Patient Day?
I never had the opportunity. Although I have thanked him many times via email in the past, I always wanted the opportunity to thank him personally. He has had a great impact on my learning process, and I continue to learn and understand more and more with the passage of time. That being said, I also have the utmost respect for him.
Q: Describe what it was like when you finally met Dr. Brian Weinshenker in person at the 2011 NMO Patient Day.
It was so wonderful to finally meet him and to discover that he is every bit as learned and compassionate, as I always knew him to be. It’s one thing to be a competent clinician and researcher, but it is quite another to be compassionate as well. Dr. Weinshenker is both, and I admire him greatly for those qualities.
Q: Do you have any other comments you would like to add?
Dr. Weinshenker, I think you’re tops. I would also like to say thank you to Victoria, Derek and Dan, for giving me the opportunity to attend the conference, and the opportunity to thank you in person. You’re the best.
Brian Weinshenker, M.D., on Grace Mitchell
Q: How did it feel meeting Gracie in person for the first time at the Patient Day?
Having communicated with her by e-mail for several years, I felt that we got to know each other. I have the utmost respect for her leadership, dedication and professionalism as a leader of the NMO support group. I was very pleased to have met her and to have acknowledged her incomparable efforts over the past decade to patients with NMO.
Q: What makes Gracie unique as an NMO patient?
Her leadership, her dedication to the community and her high degree of professionalism. When she contacts me to clarify a clinical or therapeutic issue, it is clear that she has thought through the issues carefully, and asks questions that are “spot on”. She never asks questions for herself, but only to clarify issues for the NMO community in general. She is very respectful of my time, and is very directed and appropriate in the questions that she sends me.
Q: In your opinion, what has Gracie done for the NMO community at large?
She is “Moses” for her people.
Q: When did Gracie first contact you and how? What was discussed?
She sent me an e-mail to clarify a question about NMO. It was probably 3-4 years ago. She has since helped us discretely make contact with patients who have expressed an interest in our research and could be helpful to us.
I had seen her before on “Mystery ER” (I think that was the name of the show…she had someone playing her telling her medical story).
Q: What was your first impression of Gracie when she first reached out to you and how did that change over time?
I was impressed how she was not asking for herself, but for the benefit of the NMO community. That has not changed.
Q: Why didn’t you ever meet her in person before the Patient Day?
To my knowledge, we were never in the same place before. I don’t think she attended the first GJCF Patient Day, if I’m correct.
Q: Did you have a chance to talk one-on-one with Gracie when you were in Beverly Hills?
Very briefly, as I was catching a flight back to Rochester after I thanked her publicly. She thanked us for our work, and for doing it “for the right reasons.” That meant a lot to me.
Q: How often do you still communicate with Gracie?
Every couple of months by email.
Q: Do you have any other comments you would like to add?
You couldn’t ask for a better leader for the NMO group…smart and truly “a lady!”