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About US

How We Support The MOGAD Community

The MOG Project is devoted to raising awareness, educating doctors, patients and caregivers, and advancing research to support those suffering from MOGAD. To achieve this, our focus is to:

  • Provide accurate information through references to published studies, having a continual presence on social media, and creating podcasts (and other communication channels) addressing high volume concerns with renown experts
  • Create a trusted community, connecting people with both doctors and other patients with rare neuroimmune conditions through physical support groups as well as social media groups,
  • Collaborate with expert doctors, researchers and other organizations, including our partners, who support the broader spectrum of rare neuroimmune disorders including MOGAD
  • Raise funds (big or small) to support MOGAD related research.

Our History

The idea of The MOG Project was born in 2017 by Julia Lefelar and her daughter Kristina Lefelar because of Julia’s diagnosis of MOG Antibody Disease (MOGAD) and the lack of information to understand and come to terms on her future. Julia had suffered for many years with undiagnosed symptoms of MOGAD. Her most acute, repeated attacks of Optic Neuritis started in 2014. She was finally diagnosed with MOGAD in November of 2017. At that time, MOG -AD was barely on the map and there was little information, if any, for patients, doctors or caregivers on the disease symptoms, diagnosis, prognosis, and treatment options. The MOG Project was formally kicked off in December of 2017 when Cynthia Albright, another MOGAD patient, and Amy Ednie jumped in to make the commitment to make a difference. The MOG Squad was born!

HISTORY OF THE MOG PROJECT

Dr. Michael Levy, Julia’s neurologist and, at the time, Assistant Professor of Neurology at Johns Hopkins, suggested that they join The Transverse Myelitis Association (TMA), now called the Siegel Rare Neuroimmune Association (SRNA) (https://wearesrna.org) as the disease should be included in their spectrum of neuroimmune diseases. The SRNA took them under their wing and allowed them to launch MOG disease advocacy as a new addition to their spectrum of rare neuroimmune diseases that they support. Since then, the group has expanded from coast-to-coast and across the Atlantic with more members of the MOGAD community willing to devote their time and effort to The MOG Project to make sure that MOGAD patients have the latest information on disease research, the best doctors and the best course of treatment. With the support of the SRNA, they helped improve information distribution through social media, podcasts, support groups and walk events.  In early 2020, The MOG Project became a non-profit organization on its own, partnering with the SRNA and the Sumaira Foundation to ensure strength in achieving their aligned missions.

Meet our MOG Squad Members

MOG Project Executive Board
MOG Project Advisory Board
MOG Project Champions
MOG Project Interns
Meet Our Medical Advisory Board

Executive Board

Amy Ednie FROM EXECUTIVE BOARD of MOG Project
Amy Ednie

President
Co-Founder

Julia Lefelar FROM EXECUTIVE BOARD of MOG Project
Julia Lefelar

Executive Director
Co-Founder

Peter Fontanez FROM EXECUTIVE BOARD of MOG Project
Peter Fontanez

Director of MOG-AD Resources and Advocacy

Jen Gould

Director of Patient Insights

Andrea Mitchell
Andrea Mitchell

Director of Blind Resources

Advisory Board

Kristina Lefelar
Kristina Lefelar

Digital Marketing & Media Consultant
Co-Founder

Jim Broutman

Chief Media Officer

Jenny Khazen
Jenny Khazen

Australian Ambassador
Medical Professional Outreach Specialist

Chuck Bies

Patient Advocacy Specialist

MOG Project Champions

Pamela Fontanez

MOG Project Champion
MOG-AD Advocate

Lisa Kovanda
Lisa Kovanda

MOG Project Champion
MOG-AD Advocate

Dawn and Brian Groves
Dawn & Brian Groves

Support Group Leaders
Lil' Hummingbird Nest

Dana Yates
Dana Yates

MOG Project Champion
MOG-AD Advocate

Becca Salky
Becca Salky

Education Consultant & Advocacy Specialist
Support Group Leader
Lifting the MOG Fog

Eileen Coyne
Eileen Coyne

MOG Project Champion
Public relations

James McKinsey
James McKinsey

MOG Project Champion
Public Relations

MOG Project Interns

Chelsea Ednie
Chelsea Ednie

MOG Project Champion
Marketing Intern
West Virginia University

Michael Diamond
Michael Diamond

Marketing Intern
University of South Florida

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 live cell-based assay was available, 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.

Australian Ambassador & Medical Professional Outreach Specialist
Advisory Board Member

Jenny Khazen

In November 2014, Jenny had her first episode of simultaneous Bilateral Optic Neuritis (BON) which left her blind and hospitalized with a ‘suspected autoimmune aetiology’ cause for her diagnosis from a clinically and radiologically isolated presentation. Jen vowed that if her vision returned, she would pursue her dream as a Primary school teacher in which it did. In August 2019, she suffered a further episode of (UON) and a relapsing MOGAD diagnosis was given to her in March, 2020 when both her CSF and serum returned positive for the MOG antibody and her relapses continued. 

Jenny joined the team to use her expertise in Mathematics to collect, organize and analyze data, her creativity and research skills to collaborate on projects and expand our social media networks, and globally connect neurologists and researchers around the world. Jen is a Primary school teacher in Sydney, Australia who has been educating kids since 2018. She is a strong advocate for little children, particularly those who have underlying health conditions. 

Read Jenny's Story Here

Support Group Leaders
Lil' Hummingbird Nest

Dawn & Brian Groves

Dawn and Brian Groves are parents to three girls and live in Stafford, VA. Their middle daughter was diagnosed with MOG-AD at 7 years old in the Fall of 2020. Trying to rapidly find and absorb as much information as possible about their daughter’s disease, they came across SRNA and attended a support group. As helpful as the group was, they realized the need for a group to support the unique needs of parents and caregivers of pediatric MOG-AD patients. After getting connected with The MOG Project, they asked Julia if a support group could be started. Dawn & Brian are thankful for the platform provided by The MOG Project to come alongside other families working through similar diagnoses with their children.

Education Consultant & Advocacy Specialist
Support Group Leader
Lifting the MOG Fog

Becca Salky

Rebecca (Becca) Salky has had MOG since she was 4 years old, although she didn’t get the official diagnosis until she was 22. She knows what it’s like to live in uncertainty and to feel very alone in navigating the world of MOG. As a result, she decided to host support groups for young adults, in an effort to form a community of those diagnosed with MOG—a place where people can learn about the disease, as well as its symptoms, side effects, and treatments.

She is a nurse by training, currently working as a Clinical Research Coordinator at the Neuroimmunology Clinic and Research Laboratory at Massachusetts General Hospital. She focuses on helping to spread awareness and lead clinical trials to find better diagnostic tools and treatments for MOG. Members of the support group she has been hosting for the past year tell her it’s a very meaningful experience for them and she has loved building a strong community of young adults dealing with similar life challenges. She hopes that anyone suffering from MOG (or MOG-like symptoms) will join her group!  

MOG Project Champion
MOG-AD Advocate

Pamela Fontanez

Pamela, is a loving and caring homemaker and mother who home-schools their two children, Israel and Isabel, a MOG-AD patient. She loves helping others and is a dedicated advocate for our cause, working along with her husband Peter.

Read Isabel's Story Here

MOG Project Champion
MOG-AD Advocate

Lisa Kovanda

Lisa is a multi-published author, screenwriter, filmmaker, speaker, and writing educator, from Nebraska by way of Tehran. She spent over twenty years in the nursing profession, and over a decade as a retail manager. She was diagnosed with MOG disease after an episode of optic neuritis in 2013. Although MOG has forced her into disability, she still pursues artistic endeavors, writing, and being an extremely amateur aviation apprentice. Her 13 grandchildren are the light of her life.

MOG Project Champion
MOG-AD Advocate

Dana Yates

Dana is an accomplished marketer with over 20 years’ experience project managing teams for complex website builds, mobile apps and social media marketing. Dana was diagnosed with MOG-AD in 2020 following a 30-day fever of unknown origin. In search of information on the disease, treatments, and prognosis, she found The MOG Project and began communicating with the team, offering contributions for new projects in addition to supporting the MOG-AD social media community. In her spare time, Dana is launching an art party business and hopes to open an art studio teaching arts and crafts for all abilities. She also enjoys creating her own art, making jewelry, and is working on a novel.

MOG Project Champion
Public Relations

Eileen Coyne

Eileen Coyne is mother to three boys, the youngest of whom was diagnosed with MOG-AD in March 2020 at age 10. Desperate to learn more about this rare disease, Eileen came across The MOG Project online and found it to be a life-line at a difficult time. A director at a national public relations agency, Kimball Hughes Public Relations, Eileen recognized that winning the attention of the media would be key to spreading awareness about MOG-AD and the incredible work done by The MOG Project. She introduced The MOG Project to the executive team at her agency and quickly sprang to action assembling a team and crafting a detailed media plan with the goal of raising the profile of MOG-AD to educate patients, caregivers and the public at-large. Since then, that partnership has led to high-profile media placements, including a syndicated piece in The Washington Post, a segment on the local NBC television affiliate in Washington D.C., and segments on international podcasts that have helped The MOG Project gain new attention from leading doctors in the space, patients, and caregivers, as well as major pharmaceutical players, grant makers, donors, sponsors and more.

MOG Project Champion
Public Relations

James McKinsey

James McKinsey is a seasoned public relations manager with experience working with nonprofit organizations and prior volunteer experience with groups like the Boy Scouts of America and the Connecticut Humane Society. James was introduced to The MOG Project by his colleagues at  Kimball Hughes Public Relations and has played a key role in building a strategy and implementing tactics to raise awareness of MOG-AD by sharing The MOG Project’s mission and story with US and international media. Recognizing the need to capture the media’s attention, James crafted a detailed media plan, drafted and developed press releases, conducted outreach with leading doctors in the MOG-AD space and worked tirelessly to build contacts with key media. Notably, James led Kimball Hughes Public Relation’s efforts to secure a medical mystery column featuring the MOG-AD journey of Julia Lefelar, The MOG Project’s Executive Director, with syndicated author Sandra Boodman in The Washington Post.

MOG Project Champion
College Intern

Chelsea Ednie

Chelsea is a Junior at WVU studying marketing, with a minor in communications and an emphasis in professional sales. She hopes to work in sales technology & software operations. She has worked many summers at The MOG project, helping at events, coordinating social media, and her latest project, that will help us gain better understanding on how we can serve the MOGAD community through surveys and marketing data analytics. Chelsea has been with us since 2019 and is still going strong! 

University of South Florida
Muma College of Business

Michael Diamond

Michael Diamond is a graduating senior at the University of South Florida Muma College of Business. He will graduate with a degree in Marketing. With a passion for acting and his degree in marketing, Michael’s goal is to apply those combined skills in the entertainment industry. Michael joined The MOG Project in February 2023 and will be working on a marketing plan specifically addressing awareness campaigns and fundraising opportunities.