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Support Groups

Hands Circling Hummingbird

We offer a variety of support groups for our MOG-AD Community. Support groups help us connect to others who have similar experiences.  So many find comfort in simply sharing their overall journeys as well as offering insight into many aspects of managing their health including how they solved problems getting the right treatment to stabilize their disease, the best way to navigate insurance and how to choose the right doctor, just to mention a few.

 

We offer a variety of support groups – all virtual through Zoom. Join one today!

What we offer

Lil Hummingbird Nest

Hosted by our Support Group Leaders, Dawn and Brian Groves, this virtual meeting over Zoom is designed to bring together parents of kids with MOG-AD.  Learn more about the Groves here.

August 2, 2022 at 7:30 PM Eastern Time (US and Canada)

This is a wonderful way to connect with other parents and caregivers of our little Moggies!  The Groves hold an informative and wonderful recurring meeting the first Tuesday of every other month and there is always something to learn from each other. Feel free to share your experience or just listen.

Since this meeting is a bi-monthly recurring meeting, you will need to register only once using the REGISTER button below.

Save the link for future meetings.  Keep the link to jump into each meeting whenever you can!  If you lose the link, we will email a reminder prior to the next meeting.  If you want to be removed from the reminder list, just let us know at info@mogproject.org

Register for the nest
Wings of Hope presents Lifting the MOG Fog a support group for young adults 18-30. Meeting Bi-Weekly

Hosted by our Support Group Leader Becca Salky, this US-based support group meeting held virtually over Zoom is open to patients 18-30 years of age. Learn more about Becca here.

July 25, 2022 at 5:45 PM Eastern Time (US and Canada)

Join us for this recurring meeting every other Monday evening at 5:45 PM Easter Standard Time (US and Canada)! 

This virtual meeting over Zoom is a great place to get together and talk about the issues that younger adults face, leaning on each other for support.

Since this meeting is a bi-weekly recurring meeting, you will need to register only once using the REGISTER button below.

Save the link for future meetings.  If you want to be removed from the reminder list, just let us know at info@mogproject.org

Register for the MOG fog
Wings of Hope presents MOG Sloggers: Finding Our Way Together. A support group for adults over 18

Hosted by a revolving group of members of our MOG Squad, including our Executive Director Julia Lefelar, Director of Blind Resources Andrea Mitchell and MOG Project Champion Lisa Kovanda.  As are all of our meetings, this is held virtually over Zoom, and this US-based support group meeting is open to patients 18+ years of age. Read more about the support group leaders here.

August 16, 2022 at 7:45 PM Eastern Time (US and Canada)

Join us for this recurring meeting every third Tuesday evening of the month at 7:45 PM Easter Time (US and Canada)!

This virtual meeting over Zoom is a great place to get together and navigate through everything MOG-AD together.

Since this meeting is a monthly recurring meeting, you will need to register only once using the REGISTER button below.

Save the link for future meetings.  Keep the link to jump into each meeting whenever you can!  If you lose the link, we will email a reminder prior to the next meeting.  If you want to be removed from the reminder list, just let us know at info@mogproject.org

Register for the MOG Sloggers

Don't see a group that might be a good fit for you?
Consider starting your own by contacting us at info@mogproject.org.

Executive Director
Co-Founder
Executive Board Member

Julia Lefelar

After many years of occasional temporarily dimming vision and chronic fatigue, Julia had a series of acute attacks of optic neuritis in 2014 and was diagnosed with Neuromyelitis Optica Spectrum Disorder (NMOSD). However, once the MOG antibody blood test was perfected, she was diagnosed with MOG Antibody Disease (MOG-AD) in 2017. It was this long, emotionally painful journey through the unknown that inspired the start of The MOG Project. After looking for answers for so many years, Julia did not want anyone else to ever feel alone in the search for help. Julia has worked as a Software Engineer and Project Leader at the senior and principal levels for over 35 years. She uses her skills in project management to help organize the team’s activities and realize their goal to provide the most up-to-date information possible to those in need. She co-leads the Wings of Hope, MOG Sloggers Support Group and is a key driving force around the success of our projects.

Read Julia's Story Here

President
Co-Founder
Executive Board Member

Amy Ednie

Amy is a long-time advocate and volunteer for various non-profit and volunteer organizations. Her experience and passion to help this cause has been instrumental in the growth of this idea into a positive force and impact in the world of MOG-AD and rare disease.  She has over 25 years of successful leadership and global experience in an operations, consulting, sales, and marketing capacity (Unisys, Oracle, Illumina).  She has an earned reputation for defining goals and objectives and creating action plans to accomplish those goals. She keeps us honest with practical advice and coaching and isn’t afraid to tackle the unknown with her connections, research and hands on approach to ‘get it done’. 

Director of MOG-AD Resources and Advocacy
Executive Board Member

Peter Fontanez

Peter is a firefighter paramedic near Orlando, Florida. His daughter, Isabel, was diagnosed with ADEM in February of 2016 which sent her to the hospital PICU. After almost making a complete recovery, she had a relapse of Multiphasic Acute Disseminated Encephelomyelitis (ADEM) with Optic Neuritis (ON) causing her to be hospitalized again. After a 2nd relapse, she was diagnosed with MOG-AD. He and his wife Pamela, along with their son Israel, have banded together to help Isabel and others who suffer with MOG and ADEM learn more about these diseases and help to further push research efforts. Together, he and Pam are proud of their incredibly close family that supports each other and loves to spend time together. 

Read Isabel's Story Here

Director of Pediatric Research Advocacy
Executive Board Member

Jen Gould

Jen joined The MOG Project in late 2018. Her daughter, Sophia, was diagnosed with MOG-AD in January 2018 after a bout of encephalitis, followed by optic neuritis. Jen’s area of focus is pediatric MOG and helping fellow parents navigate this condition to find their new normal. She lives in Raleigh, NC with her husband, Mark and their two children Sophia and Sebastian.

Read Sophia's Story Here

Director of Blind Resources
Executive Board Member

Andrea Mitchell

Andrea Mitchell has had relapsing form of MOG-AD since October 2011. It took 2 years for her to find the right diagnosis and due to a lack of aggressive treatment, she lost the sight in both of her eyes. MOG-AD has also affected her hearing and bladder. She often suffers from daily pain all over her body and continually fights off fatigue. She has a very loving and supportive husband named James. They have a sweet Pekingese by the name of Bubba and a loving retired guide dog named Newcastle. They have a beautiful yellow lab named Indy and he is Andrea’s new guide dog since October 2021. Her passion is to educate, empower, promote advocacy and support others dealing with this rare condition. She enjoys helping those who are newly blind find resources for gaining their independence. As an Executive Board Member for The MOG Project, she assists in providing educational materials, conducts support groups and connects with others through social media and email inquiries. Her husband James is passionate about advocacy in the caregiver role. They currently live in the San Francisco Bay Area located in northern California.

Read Andrea's Story Here

Digital Marketing & Media Consultant
Co-Founder
Advisory Board Member

Kristina Lefelar

Kristina is a graduate of Towson University, where she achieved Summa Cum Laude honors in Psychology and Communications. She was a member of Pi Kappa Delta Honors Society, National Speech & Debate Association and The National Society of Collegiate Scholars. Kristina works as an Account Manager at a marketing agency, managing consumer brands’ affiliate marketing programs in various industries (Fashion, Home Decor, Technology, etc.) She currently consults on our digital marketing & PR efforts. She helped create and co-moderate our first podcast on MOG-AD and has supported many of our projects, including blog and newsletter articles, website development, and social media management. As an extracurricular passion of hers, she completed a theatre & acting intensive at the American Academy of Dramatic Arts in New York City, and enjoys being involved in the entertainment industry in her spare time.

Read Kristina's Story Here

Chief Media Officer
Advisory Board Member

Jim Broutman

Jim was a publicist in Los Angeles for 17 years. In 2016, at the peak of a second career, he was struck with Transverse Myelitis (TM) and, at the time, what doctors thought were two Multiple Sclerosis (MS) lesions (he now has six lesions).  This episode affected his ability to walk, caused memory issues and other various side effects. Eventually, he recovered his ability to walk, but was left with memory issues and the other side effects. These remaining issues, especially those affecting memory, caused him to be permanently disabled and say goodbye to his career.  A year later, he developed Optic Neuritis (ON) and was officially diagnosed with MS for which he started treatment. Three months later, his blood work was sent to the Mayo Clinic by his local neurologist and tested positive for MOG, which subsequently ruled out MS.  He was able to get an appointment with Dr. Pittock, the head of neurology at Mayo, and now refers to him as “My God and Doctor” (in partnership with his local neurologist).  Jim is more than happy to be a guinea pig for Dr. Pittock’s research.  Today, he uses no preventive treatment and Jim’s titer level was and still is 1:1000.  To support Dr. Pittock’s research to find a cure, Jim has set up his own foundation with Mayo, which can be found on their website. 

Director of Adult Research Advocacy
Advisory Board Member

Chuck Bies

Chuck recently retired from a 35-year career in information technology management.  Chuck joined The MOG Project in late 2019 after being diagnosed with MOG-AD in January 2019 which included a temporary loss of vision caused by Optic Neuritis.  As an advocate for The MOG Project, Chuck is focusing on aiding doctors in their research efforts for improved treatment options and ultimately a cure. He lives in Minneapolis, MN with his wife Susan.  He has two grown-up children, Brian and Katie.

Social Media & Community Outreach Specialist
Advisory Board Member

Diana Lash

Diana lives in Nevada, near beautiful Lake Tahoe with her husband, Kenny and their 2 daughters, Kennedy and Kylee. At age 12, her youngest daughter, Kylee, was diagnosed with Optic Neuritis in April 2018 and later MOG-AD. Diana joined The MOG Project in early 2019. Her goal is to spread awareness and advocate for this rare disease through her work with The MOG Project social media outlets on Facebook and Instagram.