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The MOG Squad® attends the Guthy Jackson Charitable Foundation 2024 Los Angeles NMO Patient Day: Resilience

The MOG Squad stands in front of the Guthy Jackson Patient Day tree. Left to Right: Dana Yates, Irene Barnabae, Victoria Jackson, Julia Lefelar, Andrea Mitchell, Kristina Lefelar, Graham Lefelar and Mike Nowin.

One of our favorite things that we do every year is to attend the Guthy Jackson Charitable Foundation NMO Patient Day. The team at GJCF always honors us with the invitation to hold a booth as well as a MOGAD Support Group.  This year was no different and the idea of several members of the MOG Squad® meeting to support this great event brought great anticipation as June 21st approached. This year was all about RESILIENCE.

On Friday, when we all arrived, we registered and were greeted with warm hugs by Lisa McDaniel, Cori Woolf and Renee Rodriguez who work hard to make this a great event for patients.  We quickly caught up as we took in the sights and sounds of old friends seeing each other again and new friends excitedly meeting for the first time. We made our way to our hotel rooms, prepared for the evening and rushed down to the second floor.  There were a variety of rooms set up for special Support Groups for a variety of demographics: Caregivers, Women, Men, Young Adults, Kids & Teens, Parents of Adolescents & Youth Diagnosed with NMOSD, Spanish Speakers and our group, MOGAD Patients and Caregivers.

We had a really nice group of visitors, one who we had met the last time we held a support group on patient day and two new friends. The group was small but with the three of us – myself, my husband Graham, our Director of Blind Resources, Andrea Mitchell, and Dana Yates, one of our MOG Project Champions and a true warrior for MOGAD Advocacy – the conversation was full and lively! New information from the last group meeting was discussed and as a group, we truly leaned on each other to help those who were new to the disease. We walked away with new friends and exchanged contact information.

Andrea Mitchell and Julia Lefelar smiling.
The MOG Squad at the Guthy Jackson Patient Day with Monica Lewinsky.
The MOG Squad poses with Dr. Michael Levy at the Guthy Jackson NMO Patient Day.

My first GJCF conference was in 2012 and I have been going continuously since that time. Even after my last conference in 2024, one thing I can say is I have always been embraced with a lot of love, support and knowledge. -- Andrea Mitchell, Director of Blind Resources

The next day, we got down to our booth and set up for the day ahead. Our Patient Brochures were available as well as great MOG Project swag. Most notably, Dana had made her inspirational painted rocks that people have come to know and love so well. Around us was the Couch Pennies Foundation as well as booths for Alexion, Amgen and Genentech. They also had a radio podcast going on in the corner. They were talking to doctors and patients about NMOSD.

During breakfast we were able to network and meet more familiar faces as they arrived. Our own Medical Advisory Council member, Dr. Michael Levy greeted us and sat down with our Chief Media Officer, Jim Broutman for breakfast and a catch-up on the cosMOG clinical trial that Jim is participating in.

What a pleasure to attend the GJCF Patient Day as part of The MOG Project. To collaborate together is so inspiring and imperative for raising awareness for our "rare" sister disease.
-- Jim Broutman, Chief Media Officer

Prior to the beginning of the event, we were able to greet and thank Victoria Jackson who is always warm, inviting and so supportive of our mission to help so many MOGAD patients globally. We thanked her and reiterated how honored we were to attend and participate in making the event special for MOGAD patients. The special guest for this event was Monica Lewinsky, who has become an authority on resilience based on personal experience.  We were able to meet her and snap a photo which was a thrill!

The event began with a special message from Victoria, setting the tone with some words about resilience in patients with NMOSD. Her words rang true as we thought about our own mascot, the hummingbird, which is a symbol of resilience and hope in the MOGAD Community.

Victoria Jackson speaking on the main stage at the Guthy Jackson Patient Day.

Michael Yeaman stood up and gave us an overview of the accomplishments by GJCF over the years as well as a quick “101” lesson on the immune system and what goes wrong in NMOSD. The research contributions that GJCF has made are phenomenal and the hope of successful techniques in tolerization is closer and closer to becoming a reality. He was kind enough to give a shout out to The MOG Project for our advocacy on behalf of MOGAD patients.

Michael Yeaman talks on the Guthy Jackson Patient Day main stage.
Michael Yeaman's slide on Tolorization: there are 10 methods to date shown on the slide.

Next, they had a Q&A panel discussion with 6 prominent physicians and researchers in NMOSD: Drs. Michelle Apperson, Paula Barreras, Yasir Jassam, Michael Levy, Masoud Majed and Anthony Traboulsee. Patients asked a variety of questions and we were happy to have the discussion include some MOGAD questions, one related to steroid dependency and another related to the challenges of managing the disease from a remote area, where the nearest expert is a plane flight away. The doctors gave their opinions which can be viewed on the GJCF videos posted for the Q&A.

Doctors talking at the Guthy Jackson NMO Patient Day for a Q&A.
Irene, a MOGAD Patient asks a question at the Guthy Jackson NMO Patient Day.

The Guthy Jackson Foundation's Patient Day did not disappoint. The expert doctors provided information and insight for both NMO and MOGAD, and we learned that new studies are showing excellent progress for turning off MOG antibodies without disrupting the rest of the immune system. I am excited to see what else is in store for MOG patients in the coming years..
-- Dana Yates, MOG Project Champion

The next panel was moderated by Lisa McDaniel and Cori Woolf.  A group of patients and caregivers discussed their own ideas about resilience in NMOSD. They told stories of their courage and methods of overcoming the sudden and impactful change in their lives. Packets of tissues were on the table as tears flowed.

This panel discussion provided a great segue into one of the highlights of the day: A sit down discussion and Q&A with Victoria Jackson and her dear friend, Monica Lewinsky. At first, we were unsure off the relevance of Monica’s story and journey to where she is now, advocating for anti-bullying and being a world-class inspiration for resilience. As the discussion unfolded, it was apparent that her story of a sudden change based on what she called “a bad decision” launched her into a whirlwind of life-changing stigma and loss of who she was, leading to what she called, “The Dark Decade”. It is exactly what patients with rare neuroimmune conditions go through when the rug is ripped out from under their feet and they face a road back to an acceptable new normal.  Her message, delivered with grace and a touch of humor, was clear, that it will get better. The darkest days, despite seeming hopeless, will improve. It takes work and a modified mindset, but it can be done.

Victoria Jackson and Monica Lewinsky Talking on the main stage at the Guthy Jackson NMO Patient Day.

Resilience is key in the journey and we all have the ability to reach within to activate it and use it as the special gift it is.

We were lucky enough to have more time for questions with Victoria on her experience and many insights were shared as attendees came up with some great questions for her. Victoria came across as a mother who turned her understandable anxiety into an amazing foundation, fighting for her daughter’s life like the mama bear that she is.

The sessions turned to two talks vital to disease management. The first was on addressing fatigue and pain given by Dr. Michael Sy. The second, given by Dr. Jacqueline Bernard, covered managing visual impairment.

After that flurry of activity, we all sat down together for a healthy lunch and we got a chance to discuss what we had learned. Co-founder and Digital Marketing and Media Consultant of The MOG Project, my daughter, Kristina Lefelar, and her fiancé, Mike Nowin, had arrived to help us talk with patients.  Both were sporting their MOG Squad® shirts as were many of our members. We took the opportunity to greet patients at our booth and provide them with any needs they might have. Just a special note – the inspirational rocks that Dana Yates makes for us were a huge hit! If you ever get a chance to see us at an event, please stop by to get one!

The MOG Project booth at the Guthy Jackson NMO Patient Day.

Giving patients a voice to share their stories and meet others in the community makes the event so special. The room really is filled with love, compassion, and connection. -- Kristina Lefelar

The afternoon was kicked off with a group of breakout sessions, notably the Ask the Doctors series where they covered teaming up with your doctor and managing daily symptoms. Other talks covered heathy lifestyle, therapies for NMOSD and a simple discussion of the science behind NMOSD. We chose to attend Dr Michael Levy’s discussion on changing therapies in NMOSD.  He was so helpful to patients and really has a gift of being able to break down the concepts so well.  We were thrilled to see him provide great help for one of the women to was in our support group the day before. She was so happy and relieved for the advice – making her long trip well worth it!

We also stopped in for a visit with Lisa and Cori who discussed advocacy with GJCF. We were graciously given the opportunity to talk about our advocacy at The MOG Project.

After a brief snack and some time at our booth networking and talking with interested visitors, we stood in front of the step-and-repeat for pictures with Dr. Levy and another MOGAD patient we have grown fond of, Caitlin Jo and her boyfriend Connor.  We then returned to the ballroom for a much-needed conversation on fostering diversity and the vital role it plays in clinical trials and research with a panel consisting of a diverse group of patients along with Dr. Michael Levy and Dr. Michael Yeaman. This discussion was led by their Diversity, Equity and Inclusion Director, Kim Jackson-Mathews.  The discussion hit many points on the importance of individuals of all ethnicities participating in clinical trials and research and how physicians can help foster trust in these trials for the best outcome for all.

Julia Lefelar, Caitlin Jo Burke, Jim Broutman and Michael Levy pose in front of the Guthy Jackson NMO Patient Day step-and-repeat.
Kim Jackson Mathews leads a discussion on diversity in rare disorders at the Guthy Jackson NMO Patient Day.

One of the final panels was led by Maoloude Toure from GJCF who talked with various NMO partners from around the world including Souad Mazari, founder and Executive Director off NMO France Association, a true warrior, friend and collaborative partner of The MOG Project. Updates were given from France, Brazil and Japan.

Maoloude Toure and the representative from NMO Brazil on the main stage.
NMO Japan on the screen at the Guthy Jackson Patient Day
Souad Mazari speaks for NMO France Association

Finally, but not of little significance, we were given closing remarks from Executive Director, Jacinta Behne, providing a message of hope, assurance of GJCF’s commitment to NMOSD patients and real progress for the future.

 

Jacinta Behne in a yellow jacket up on the main stage at the Guthy Jackson Patient Day. Colorful flags are in the back.

We then gathered for the yearly “Family Photo” up on the main stage.  Enthusiasm was high and smiles were full!  We all said our goodbyes knowing full well that our friends would return home.

We will all look forward to next year and continue our collaborative work with our good friends and extended family at Guthy Jackson Charitable Foundation! We thank them for their dedication to NMOSD and MOGAD patients!

By Julia Lefelar, Co-founder and Executive Director