The MOG Project, a nonprofit organization committed to supporting the research and treatment of Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD) officially kicked off its Children’s Ambassador and Children’s Champions programs at the US MOGAD Patient Summit at the Mayo Clinic this past August. The event and the children’s programs are all firsts of their kind as advocates continue to build momentum for proper diagnosis, research, education and support around this rare neuroinflammatory condition.
The MOG Project Children’s Ambassador program was designed to honor and encourage children diagnosed with MOGAD and to give them a way, if they choose, to advocate for MOGAD and help others. MOGAD is a neuroinflammatory condition – not diagnosable by antibody test until 2017 – in which the immune system attacks myelin oligodendrocyte glycoproteins in the optic nerve, brain and/or spinal column. Children diagnosed with chronic MOGAD navigate unpredictable flares requiring hospital stays and a variety of therapies from monthly infusions to high-dose steroid treatments and more, all of which interfere with family, friends, school, sports and fun.
“The in-person launch of the Children’s Ambassador Program at the MOGAD Patient Summit at the Mayo Clinic was an amazing success,” said Jim Broutman, Chief Media Officer for The MOG Project. “Fifteen-year-old boys struck up conversations and shared contact information. Young girls made new friends at the crafting table. Teen Brody Kalk even took to the stage participating in a panel where he shared his inspiring story.”
The MOG Project also created a means to recognize siblings and friends of MOGAD patients in The MOG Project Youth Champions program where these children are honored for the support they provide their families and the sacrifices they make to support their loved one.
MOGAD Ambassadors, Champions, family members and caregivers were celebrated in the Family Zone during the Patient Summit. Here, kids could take a break from the presentations to watch a movie, make a craft, or just take a minute to meet a new friend. The kids were also celebrated at a picnic, complete with a game truck, petting zoo, miniature golf, caricature artist, carnival fare and a live band.
The MOG Project thanks everyone who contributed to and participated in this amazing event. These events are made possible thanks to your generous support, and we look forward to hosting more educational MOGAD events!
About The MOG Project: The MOG Project is a 501(c)3 nonprofit committed to raising awareness and supporting the treatment of Myelin Oligodendrocyte Glycoprotein Antibody Disease, or MOGAD. Founded in 2017, The MOG Project is supported by a medical advisory board made up of leaders from top U.S. neuroimmunology labs. For more information about The MOG Project, visit https://mogproject.org/.
By Eileen Coyne
I love this! I am glad the children with MOG were able to connect, share and just be kids.
When I first had my symptoms at the age of 7 years old in 1979, my optometrist and neurologist knew something was wrong, but didn’t know what. I was hospitalized and I was tested for everything under the sun, but all tests came back negative. On the 7th day, I woke up and everything was gone! Then in April 2022, it came back and with a vengeance! I was hospitalized twice and again none of the doctors knew what was wrong with me. Finally, I met my neurology specialist and she diagnosed me with MOG.
Come to find out, I was dormant for 44 years!
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