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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 when Julia was diagnosed with MOG Antibody Disease (MOGAD) and discovered a significant lack of information to understand and come to terms on her future. Julia had suffered for many years with undiagnosed symptoms of MOGAD, but her most acute, repeated attacks of Optic Neuritis started in 2014. At that time, MOGAD was barely on the map and there was little information with questionable accuracy 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 Julia, her daughter, Kristina Lefelar, Amy Ednie and another patient made a commitment to not let other patients go through similar feelings of hopelessness caused by lack of awareness and information. This small team found others with similar stories who were also willing to join the effort and 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

Executive Board

Amy Ednie FROM EXECUTIVE BOARD of MOG Project
Amy Ednie

President
Co-Founder

Julia Lefelar

Executive Director
Co-Founder
Support Group Leader
MOG Sloggers

Peter Fontanez FROM EXECUTIVE BOARD of MOG Project
Peter Fontanez

Director of MOGAD Resources and Advocacy

Jen Gould

Director of Patient Insights

Andrea Mitchell
Andrea Mitchell

Director of Blind Resources
Support Group Leader
MOG Sloggers

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 Medical Writing Team

Melissa Lefelar
Melissa Lefelar

MOG Project Champion
Editor In Chief
Medical Writer

Becca Salky
Becca Salky

Education Consultant & Advocacy Specialist
Medical Writer/Editor

Hannah Kelly
Hannah Kelly

Medical Writer & Student
Case Western Reserve University
School of Medicine

Erin Saito, PhD

Medical Writer
Brigham Young University

MOG Project Marketing & Communications Team

Chelsea Ednie

MOG Project Champion
Digital Marketing & Communications Intern
West Virginia University

Elana Kane Digital Marketing & Communications Intern
Elana Kane

MOG Project Champion
Digital Marketing & Communications Intern
Jericho High School

Emma Liles
Emma Liles

Digital Media & Advertising Intern
West Virginia University

Michael Diamond
Michael Diamond

Marketing Specialist
University of South Florida

Support Group Leaders

Kevin Jaffe
Kevin Jaffe

Support Group Leader
Lifting the MOG Fog

Scott Tarpey
Scott Tarpey

Support Group Leader
Lifting the MOG Fog
Founder MyMyelitis

Dawn and Brian Groves
Dawn & Brian Groves

MOG Project Champions
Support Group Leaders
Lil' Hummingbird Nest

Kasha Jenkins
Kasha Jenkins

Support Group Leader
The MOGnificent Employee

MOG Project Champions

Pamela Fontanez

MOG Project Champion
MOGAD Advocate

Dana Yates
Dana Yates

MOG Project Champion
MOGAD Advocate

Eileen Coyne
Eileen Coyne

MOG Project Champion
Public relations

James McKinsey
James McKinsey

MOG Project Champion
Public Relations

In Loving Memory

Lisa Kovanda
Lisa Kovanda

MOG Project Champion
MOGAD Advocate

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.

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. 

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.

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.

Digital Marketing & Media Consultant
Co-Founder
Advisory Board Member

Kristina Lefelar

Kristina graduated with Summa Cum Laude honors from Towson University in 2017, where soon after she started curating the idea for a nonprofit advocating for MOG Antibody Disease with her recently MOG-Ab positive mom (our Executive Director!) Watching her mother’s illness unfold over the prior years while also exploring her passions post-graduation, she mainly focused on supporting The MOG Project’s branding, vision, and digital presence. Kristina has been working in the Advertising industry ever since, and currently helps volunteer at events and advise where needed.

She helped create and co-moderate our first podcast on MOGAD with the SRNA 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.

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. 

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.

MOG Project Champion
MOG-AD Advocate

Lisa Kovanda

Lisa was 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 forced her into disability, she still pursued artistic endeavors, writing, and being an extremely amateur aviation apprentice. Her 13 grandchildren were 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
Digital Marketing & Communications Intern
West Virginia University

Chelsea Ednie

Chelsea is a Senior in The Chambers College of Business and Economics at West Virginia University pursuing a Bachelors of Science degree in Marketing with a minor in Communications. Chelsea is interested in Customer Relationship Management, Digital Marketing and Finance. She has worked many summers and semesters at The MOG Project helping at events, directing our Social Media Team of Digital Marketing and Communications Interns, as well as her latest projects conducting Social Audits, launching surveys, renewing our Social Media Communications Plan, putting together Marketing campaign proposals and presenting contributive analytics to allow us to understand the direction and progression of our social profiles. All of these projects have allowed The MOG Project to gain a better understanding of how we can best serve the MOGAD community and continue to pursue our dedication to our mission. Chelsea has been with us since 2018 and is still going strong! 

Marketing Specialist
University of South Florida
Muma College of Business

Michael Diamond

Michael Diamond is a graduate of the University of South Florida Muma College of Business. He graduated 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.

Senior, Jericho High School
Digital Marketing & Communications Intern

Elana Kane

Elana Kane is a Senior at Jericho High School dedicated to creating positive impacts and connecting communities through digital marketing. She serves as a strong advocate for MOGAD awareness, managing digital marketing aspects for The MOG Project and the Neuroimmunology Clinic and Research Laboratory at Harvard Massachusetts General. With expertise in social media management, Elana runs The MOG Project’s Instagram account, engaging the global MOGAD community through compelling announcements about support groups, study opportunities, pharmaceutical partnerships, and MOGAD awareness month. Driven by her mission to raise awareness for this rare autoimmune disease, Elana is thrilled to make a positive impact in the field and empower individuals with knowledge.

Medical Writer & Student
Case Western Reserve University
School of Medicine

Hannah Kelly

Hannah is a fourth-year medical student at Case Western Reserve University School of Medicine and an aspiring neuroimmunology specialist. In medical school, she performs clinical research in multiple sclerosis and other autoimmune diseases of the central nervous system.
She also shares her dedication to teaching and medical education by mentoring underserved high school students and precepting clinical skills sessions for medical students.

Hannah graduated from Emory University in 2019 with a double major in Neuroscience and Behavioral Biology and French Studies. She then spent her gap year at the NIH studying magnetic resonance imaging in a nonhuman primate model of multiple sclerosis. She joined The MOG Project in May 2023 to write blog posts that convey take-home points from important research publications for MOG patients.

Medical Writer
Brigham Young University

Erin Saito, PhD

Erin Saito, a fellow MOGAD patient, recently received her PhD from Brigham Young University in cell biology, researching the effects of ketogenic diets on brain metabolism and cognition. Because knowledge is power, she joined The MOG Project as a medical writer to help make MOGAD research understandable and accessible for everyone. She will be working with MOGAD researchers to highlight exciting new research in MOGAD drug development and helping members of the MOGAD Community understand how how they can get involved. 

MOG Project Champion
Editor In Chief
Chatham University

Melissa Lefelar

Melissa has a B.S. in Biology from Chatham University where she designed a clinical trial to compare cognitive and physical effects of DHA supplementation from various consumer products.  Through writing the research materials, she found fulfillment in breaking down scientific concepts for anyone to digest.  She also spent two years as a traveling educator to students of all ages while working with a nonprofit dedicated to planting and maintaining fruit tree orchards in underserved schools.  She joined The MOG Project to continue making scientific information related to MOGAD educational and accessible for everyone.

Support Group Leader
Lifting the MOG Fog

Kevin Jaffe

Kevin presented to the hospital with transverse myelitis in September 2022. It got to the point where he lost his ability to function as an individual. He couldn’t cut his fingernails, grip a pencil, turn the key in his ignition, or open a zip lock bag.

He has been stable for roughly a year now and he gets bi-annual Rituximab infusions. He is in the “gray area” between MOG and MS and he feels he will not get a definitive answer anytime soon.

He was very grateful to come across the Lifting the MOG Fog group when he was recovering after his time in the hospital. Being able to relate to what others with the disease has been such a benefit. His biggest piece of advice he can give is to keep a positive attitude when navigating symptoms, treatments, appointments, etc. as it makes such a big difference!

Support Group Leader
Lifting the MOG Fog
Founder MyMyelitis

Scott Tarpey

Scott was diagnosed with MOGAD in May 2020 after a Transverse Myelitis attack a few months prior. Whilst recovering he founded MyMyelitis, originally as a blog to document his recovery and then to advocate for and share information about MOGAD and TM to others.

Support Group Leader
The MOGnificent Employee

Kasha Jenkins

Kasha Jenkins is a paraprofessional for the New York City Department of Education. She received her Bachelor’s Degree in Adolescence Education from Saint Francis College. In October 2020 she was diagnosed with MOGAD after experiencing Optic Neuritis (ON). While recovering, she realized navigating the work force came with its own set of challenges. In April 2023, Kasha decided to create an Instagram page, titled WorkingwithMOG to create a safe haven for those with chronic illnesses and disabilities to discuss their triumphs and setbacks in the workforce as well as providing tips when communicating with employers about their disability. She hopes in the future to collaborate with HR Directors and DEI consultants to discus disability rights in the workplace. 

Digital Media & Advertising Intern
West Virginia University

Emma Liles

Emma is a Senior at West Virginia University studying Advertising and Public Relations, with a minor in Photography. She hopes to work in copywriting and/or in a creative direction at an advertising agency. She has worked many years at the Westminster Rec Center in Westminster, Maryland helping at events, communicating with customers and providing services to meet the needs that current members require. At The MOG Project Emma will help grow our social media status by keeping up-to-date with younger audience members and help work on projects that spread awareness for the MOGAD community. Emma Plans to graduate WVU in May of 2024 and is excited to be part of The MOG project