The MOG Squad hit the road on July 8th for the Guthy Jackson Charitable Foundation 2022 Patient Day in Los Angeles, California! We traveled, we learned, we made some new friends and were reunited with some old ones. It was the first year since COVID-19 hit that we were blessed to be coming together in person to see and hug some of our own team for the first time!
We arrived at the Hilton LAX to see and meet some of our favorite advocates and medical professionals. It wasn’t long before we were welcomed by Lisa McDaniel and Cori Woolf, two of the GJCF team involved in organizing the event. We soon ran into Jacinta Behne, Executive Director of the foundation scurrying around welcoming everyone and passing us a warm smile and welcoming hug. We were lucky enough to see Dr. Michael Levy who was there to lend his expertise to several events including panel discussions and patient Q&As. Naturally we took time for a photo op! Dr. Elias Sotirchos was there as well to partake in patient Q&A sessions and we had a great opportunity to discuss his ongoing research as well. Everyone was thrilled to meet Andrea Mitchell’s new guide dog, Indy.
The committee provided us with a fabulous booth with a beautiful poster for The MOG Project. We stocked it with giveaways such as patient flyers, wristbands, koozies and beautiful keychains, pendants and painted rocks done by our amazing volunteer and MOG Project Champion, Dana Yates. Dana spent a good amount of time sneaking around the hotel, randomly leaving her painted rocks with inspiring NMOSD and MOG-AD messages. We were pleased to see them disappear as people found them!
The first day started off great with a welcome gathering where new friends could be made and old friends could reunite. It wasn’t long before patients could break off into separate splinter meetings. The MOG Project held a support group meeting in one of the break-out rooms. We enjoyed the small gathering of patients with MOG-AD and getting to know them and hear their stories. We were happy to get a visit from a representative from CorEvitas, the company which is working with GJCF on the SPHERES: a new registry benefiting both NMOSD and MOG-AD patients. The evening ended after dinner with the Moth story telling session where selected patients stood up and told their stories; it was a beautiful experience and many tears flowed in the room. We had the special treat hearing Michael Yaeman, PhD play his guitar.
We all got some much needed rest and prepared for the full day of fun the second day. The day started after breakfast when we were treated to a welcome address by Victoria Jackson, who we had the pleasure of speaking with many times throughout the weekend. Her commitment and gracious attitude shines and we were grateful for the chance to chat. We then heard some updates on what has been happening in the NMOSD community. From newly FDA approved medicines and clinical trials for upcoming treatments to the incredible developments for soon-to-be launched clinical trials for several methods of “Tolerization” which promises an effective cure, one thing stood out to us for the first time: MOG-AD is now being studied at an astounding rate. Finally, this disease is at the forefront of research and there is new hope for MOG-AD patients.
There were two “Ask the Docs” sessions and another panel session on the “Hot Topics” of the day. The list of doctors attending was A-list: Drs. Orhan Aktas, Simon Broadley, Lilyana Amezcua, Michael Levy, Victor Rivera, Silvia Tenembaum, Jose Flores-Rivera, Andrew Goodman, Romain Marignier, Esther Melamed, Elias Sotirchos, Ann Yeh, Hesham Abboud, Jeffrey Bennett, Yael Hacohen, Sara Mariotto and Dean Wingerchuk.
After a delicious lunch together, the rest of the day was filled with breakout sessions, which were made up of a smorgasbord of specialized talks and Q&A panels which we attended and asked important questions on the hot topics of the day in MOG-AD.
Later in the afternoon, we listened to a conversation with Victoria Jackson and incredible actress, athlete, public speaker and double amputee Aimee Mullins, who inspired us with her story of success despite adversity. The day ended with everyone happy. The icing on the cake was the tradition of the family picture. It took a while to line up, but it was certainly well worth it.
One the closing day, the GJCF team had a special event for us: Artistry iNMOtion, which is a therapeutic activity that allows expression through art and focuses on mindfulness, self-care, connection, creativity, and self-exploration. Our own Andrea Mitchell, who lost her sight completely enjoyed creating art through this process. We all created beautiful pictures and had a ball together.
Well, needless to say, we were fed well! And not just with the delicious food they served; knowledge and hope were on the menu as well. We met so many lovely people who despite having NMOSD or MOG-AD, have found a way to live their lives well thanks to efforts by organizations like the Guthy Jackson Charitable Foundation who have advocated so that researchers can make such great strides leading to hope for this family of people with rare neuroimmune disorders. We also made some important connections with professionals who can help the MOG-AD community through our advocacy. At the end of the weekend, “Goodbye hugs for now” happened and we had some laughs, a few sips of champagne or wine – okay, maybe more than a few – and we all headed back home with happiness in our hearts thanks to great efforts over many years by the great team at GJCF backed by Victoria Jackson, Bill Guthy and their lovely daughter Ali Guthy, the inspiration behind this incredibly generous and effective organization.
We can’t wait to do it again next year. See you all then!
By Julia Lefelar, Executive Director