Winter 2022
Letter to Members
(reprinted from May 21, 2022 original distribution date)
Dear Members,
It is with great sadness that we share with you news of the recent passing of our executive director and two board members. Marleen (Mar) Burns died in January 2022. Marleen was our long-time executive director. She was devoted to providing education and support to those with myasthenia gravis and to their families. Her dedication to the mission has been instrumental in keeping this organization going. Bobbi Johnson passed away in September 2021. Bobbi helped to start this organization with Marleen many years ago and had served in various roles for our MG group. Bobbi’s husband, Bill Johnson, passed away in February 2022. Bill was a long-time Executive Board Member who served in the role of Vice Chairman. He was an ardent supporter of this organization and provided insight and support to those without MG in the caregiver role. Each of these individuals worked long and hard to create the MG support group and its mission. Mar, Bobbi, and Bill will be sorely missed. The Board of Directors for MGAC is committed to continuing the work and mission of this support group. We are in the process of reorganizing and are meeting regularly to plan out the process. Here are some important updates:
We are seeking an executive director and two new board members to fill the vacancies. (1) Please contact the board at the email below if you or someone you know may be interested.
The MGAC email address has changed to: 4mgacolorado@gmail.com
The MGAC office phone number has been disconnected and we are exploring options. (2)
Our PO Box has been changed to PO Box 303, Lafayette, CO 80226.
Our website is being revamped and updated. (3)
Support group meetings (in-person or by Zoom) are a priority and should restart soon.
The MG organization has recently signed on to Amazon Smile. You can support our organization by selecting MGA of Colorado as your charity of choice when ordering from Amazon. (You must order from Amazonsmile.com.)
If you would like to know more about the vacancies, please send an email to the new address above and we can put you in contact with a board member. Thank you for your understanding as we navigate these changes to our organization. We look forward to being able to come together as a group soon.
Sincerely,
Sharon Leahy, President
Jim Behanna, Board Member
Ken Connell, Board Member
Dave Gestner, Board Member
Susan Hobart, Board Member
Reid Turnquist, Board Member
Katie Bernard, Board Member
Footnotes to the letter:
Dave Gestner has volunteered to serve as Executive Director.
We now have a cell phone that can be passed to various members: 303-803-7698
You can view the redesigned website at: https://www.4-mga.org
Donations
Support
James & Wilma Mitchell
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James R. Bruce
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Michael & Sigrid Walker
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Michael Homyak
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Benevity Fund
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Network for Good
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Amazon Smile
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Lanay James
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David & Mary Gestner
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Gary & Linda Davis
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Beverly Smith
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Kelly Hedlund
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Jim Behanna
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Bev Severson
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Marathon Foundation
James & Wilma Mitchell 〰️ James R. Bruce 〰️ Michael & Sigrid Walker 〰️ Michael Homyak 〰️ Benevity Fund 〰️ Network for Good 〰️ Amazon Smile 〰️ Lanay James 〰️ David & Mary Gestner 〰️ Gary & Linda Davis 〰️ Beverly Smith 〰️ Kelly Hedlund 〰️ Jim Behanna 〰️ Bev Severson 〰️ Marathon Foundation
In Memory Of
Walter Kent Moeller by Gloria Moeller
Walter Kent Moeller by Evelyn Skiles
Unknown by Decker & Tobias
Monty McWilliams by Ethel McWilliams
Emaline L. Lotz by Michael Homyak
Bobbie Mitchel by Katie & Steve Bernard
Research
Beverly Smith
Mike & Sigi Walker
Antigen-Specific Treatment of Myasthenia: Chimeric Autoantibody Receptor T Cells
MDA Grants 2022
Myasthenia gravis (MG) is an autoimmune (AI) disease, i.e., disorders in which control of the immune system becomes dysfunctional, allowing production of antibodies (Abs) that attack the body itself. In MG the target of AI attack is the crucial connection between nerve and muscle, which leads to the muscle weakness that characterizes the disease. Currently available treatments of AI diseases in general, and MG in particular, involve drugs that nonspecifically reduce the activity of the entire immune system, both the abnormal AI portions and the normally functioning portions. Use of these agents requires balancing the disease-directed effect with the side effects resulting from nonspecific blockade of normal immune function. The current project aims at developing a treatment for MG (and possibly other AI diseases) that affects only the abnormal AI portion of the immune system by targeting the production of the abnormal Abs directed at the nerve-muscle connection. Some of the patient’s immune cells (T cells) will be engineered to attack the subset of Ab-generating cells (B cells) that produce the AI Abs, leaving all other B cells untouched. This is possible because each B cell displays on its surface the single Ab it is capable of making. The engineered T cells target the AI Abs on the surface of the abnormal B cells, stopping the production of the auto-Abs, potentially terminating the disease – while leaving the rest of the immune system intact.
Grantee: David Richman, M.D.
Grant type: Research Grant
Award total: $300,000
Institution: The Regents of the University of California (University of California Davis)
Country: California, United States
Myasthenia Gravis Foundation of America
While the Myasthenia Gravis Association of Colorado is not associated with MGFA, we appreciate the useful information that can be found on its site. Visit MGFA.
Muscular Dystrophy Association of America
Myasthenia Gravis Association of Colorado funnels our research contributions through MDA as they seem to be the most deeply involved in MG research. Visit MDA.
Measuring AChR autoantibody effector functions in myasthenia gravis patients
MGFA Research Grant 2022
The MGFA has officially announced its inaugural award recipient. We congratulate Fatemeh Khani, PhD, a Postdoctoral Associate in the Departments of Neurology and Immunobiology at Yale University School of Medicine.
Dr. Khani’s proposed research project “Measuring AChR autoantibody effector functions in myasthenia gravis patients” as part of her postdoctoral fellowship will be funded specifically to support her salary over a period of 3 years ($75,000/ year) and will officially begin on January 1, 2023. Her fellowship training will be conducted in the Laboratory of Dr. Kevin O’Connor at Yale University.
Research Summary: The project investigation is focused on providing the framework for the development of MG biomarkers that can directly help patients by predicting treatment efficacy and disease progression. Dr. Khani seeks to understand immune mechanisms underlying MG that are anticipated to more precisely define this heterogeneous disease. These collective studies will provide a set of well-characterized biomarkers which will serve as tools for the community to more accurately model AChR in vitro. In addition, the work will provide a framework for understanding the association between autoantibody binding properties and effector functions in MG and identify candidate biomarkers that may proactively predict response to therapeutic complement treatment and avoid severe side effects from unnecessary interventions.
In addition to gaining a deeper understanding of MG immunopathology, the work will generate forward looking deliverables that are relevant to MG patient care in terms of prognosis and personalized/tailored therapies. This project’s proposed outcome may provide a deeper understanding of the mechanisms underlying the production of autoantibodies – a highly important determination for both the patient and clinician. Fatemeh Khani Habibabadi, PhD (Postdoctoral Associate, Yale University) Bio: Dr. Khani completed her bachelor’s degree in cell and molecular biology at Isfahan University, followed by her master’s and PhD degrees in molecular genetics with a special focus on the molecular approach to studying multiple sclerosis at Tarbiat Modares University, Tehran. Based on these academic experiences, she is trained in laboratory-based human immunology and has extensive experience with the approaches that will be used in this work.
Request for Newsletter Content
Do you have a story that you would like told? We are always looking for human interest stories. We would like to hear from the “Haves” and the “Have-nots”. It can be about the Myasthenic (Have) or their loved ones (Have-not).
If you have an addition to the newsletter, please send it via our contact form. We look forward to your offerings! Contact Reid at 303-886-0986 for more information.
Newsletter Editor: Reid Turnquist
Medical Advisor: Beverly Gilder, M.D.
Please note that the medical views expressed in this publication are those of the author(s) and do not reflect any official position of the Myasthenia Gravis Association of Colorado.
