Meet our all-volunteer team
Meet our passionate, dedicated team behind the all-volunteer managed nonprofit, Myositis Support and Understanding!
You will meet our Board of Directors, group Administrators, and our Medical Advisors, all who are dedicated to volunteering their time in support of our mission and vision. We are all dedicated to improving the lives of Myositis patients!
Meet the Board of Directors
Jerry Williams, Founder and President
Jerry Williams, diagnosed with Polymyositis in 2003, founded MSU in 2010 under the original name of Polymyowhat. Jerry is the Founder and President of MSU and he is passionate about helping others living with this rare disease. Myositis forced Jerry out of the workplace, where his focus was in finance and analytics, and onto long-term disability. He has since been diagnosed with two additional autoimmune diseases, vasculitis, and Lupus, and finding effective treatments has been a constant challenge.
Through the many health and life challenges Jerry has faced, he has come to believe that we all must be “understanding” and be willing to learn more about each other so that we can live a more positive life. One his many loves are smiles, and he often reminds those around him to smile and happiness will follow.
Jerry is married to his partner Charlie of 13 years and they are the proud fathers of three Dachshunds. Jerry enjoys reading, writing, and website design and development. Jerry and Charlie also operate a small business with a concentration on website design, graphic design, and computer services, located in Lincoln, Delaware.
Angela Chami, Vice President
Board Liaison for Social Media, Outreach, and Support Groups
Angela has had Juvenile Dermatomyositis since she was a young infant, so she knows no other life but this one. She has suffered a great deal, but has also become a very passionate person due to her struggles. Myositis is a huge part of her existence. Learning different ways to cope while advocating for chronic illness has become her passion.
In September 2012 she gave birth to a healthy, beautiful girl. Because of JDM she wasn’t sure being a mother was something she’d ever experience in her lifetime. Her daughter has made her all the more grateful for everything she has to this day despite Myositis.
Angela hopes to become a big part of the MSU Association and will do everything in her power to be an educator and leading source for all things Myositis.
Penny Bundy, Treasurer
Penny Bundy was diagnosed with Inclusion Body Myositis in 2015, after 7 years of experiencing symptoms of the disease with no clear diagnosis. In researching the disease, she found and joined an online MSU support group. It was because of Penny’s positive experience with this group that she was excited about joining the MSU team.
When Penny’s two children were both in school, she enrolled in the local community college intending to take a few basic business courses with the goal of starting a free lance photography business. Thanks to an encouraging accounting instructor, she was soon sidetracked from that goal and went on to pursue an accounting degree at university.
Penny’s work background has been varied, from volunteer bookkeeping positions for church, school and community theater, to Staff Accountant for a multi-service healthcare system which employed 5000.
In 2001, Penny and her husband John took an early retirement. They sold their home, purchase a fifth wheel and became full time RVers. During their time on the road they continued to work, at one time helping open a new Indian casino where John trained the card dealers and Penny helped in establishing the slot audit and accounting department.
In early 2014 Penny and John retired from the road as Penny’s mobility was becoming impaired and getting in and out of the RV was becoming more difficult. They purchased a small home on two acres that they share with their 16 year old cat, Ralph.
Lekiha Morgan, Board Member
Lekiha Morgan resides in Texas, and is a mother of three; two young adults and one teenager. She was born with a spirit of love and compassion for others. She gave selflessly for 21 years in her professional career as a Police officer, but like most mothers, she often forgot about herself.
After 3 years of testing yielding inconclusive results, Lekiha was diagnosed with Dermatomyositis in 2014. Lekiha fought through 2015 to finish her BA degree in Maritime Studies with a minor in Anthropology while also working full-time. Full steam ahead was the way she lived her life. Myositis forced her to take a leave of absence from work in February 2015. She had a plan to start a different form of treatment (IVIG) in March.
“I will get my strength and endurance up and return to work in no time,” she thought, “I was anticipating entering Grad school for Law after graduating in August.” Her professional dreams were halted by Myositis. God had a different plan.
Feeling devastated by the loss of her career, Lekiha began to lose hope while the bright smile that everyone loved about her became dimmer. She sought help outside of her inner circle of family and friends because no one could relate to what her body, mind, and spirit were going through. She found MSU online support group. The restoration process began. “MSU was my lifeline. It is an honor and a pleasure to join the team/family.”
Myositis ironically causes weakness, but it turned out to be Lekiha’s greatest strength. Lekiha has found an inner fight in her that she didn’t know existed. A fight for her life, for her joy, and for her peace of mind. She is growing, learning, and loving each day that she counts as a blessing. Myositis has placed a different perspective on life for her; a new plan for her new normal. With small steps and placing herself first, she is excited about sharing her love for helping people, and her passion for writing, as her gifts of service to MSU and fellow Myo-Warriors. We are as One… in this Together.
Emily A. Filmore, Co President
Emily holds a BA in Psychology from Westminster College in Fulton, MO and a Juris Doctor from St. Louis University School of Law, but her career path has been as winding and unpredictable as the Juvenile Dermatomyositis that has gripped her body for 20 years. Combining humor and spirituality, Emily has found a way to make peace with her chronic disease, even celebrating it, grateful for the lessons and blessings it has brought into her life.
Emily has found her passion in using her creativity to help others. Her inspirational book, “The Marvelous Transformation: Living Well with Autoimmune Disease,” is being released in June, 2015. She also writes on the combined topics of spirituality and parenting. She has written the With My Child series of children’s books about family bonding and is involved in the Conversations with God for Parents program by Neale Donald Walsch. She has a new book, by the same name (“Conversations with God for Parents”) being released in Fall 2015 co-authored with Neale Donald Walsch and Laurie Lankins Farley.
Emily shares a beautiful life with her husband, daughter, and nephew. They collaborate to create a humorous and harmonious home of wellness, partnership, love, and peace.
Cynthia Booker, Secretary
Cynthia Booker is a proud native Texan and entertainment production professional. She first learned about myositis when her mother, Sandra, became diagnosed with PM. Wishing to serve others who have been challenged with myositis, she decided to utilize her God-given talents and skills by committing to the MSU board. Cynthia has been blessed to have the opportunity to make her mother proud by earning her MFA in Theatre Design and Technology – Sound Design and Audio Technology at University of Illinois at Urbana-Champaign and her BFA in Theatre Design and Technology at Baylor University, emphasis in stage management and sound design. Cynthia has been given the opportunity to work in various capacities for the Oregon Shakespeare Festival, Goodman Theatre, Williamstown Theatre Festival, Chippendales, Next Theatre, Southeastern Summer Theatre Institute, WaterTower Theatre, Mills Entertainment, Haven Productions, Greyman Theatre Company, Parkland Theatre, Shakespeare Dallas, and the American Actors Company. After much schooling and touring both nationally and internationally, Cynthia has now settled in Modesto, California as the Assistant Director of Production at Gallo Center for the Arts and makes sure to call and annoy her mother on a daily basis.
Sandy Block, Board Member Emeritus
Sandy is a founding member of MSU, former Board Vice President and senior administrator of the MSU groups and public information page. Her interest and background in research and writing and as her parents’ healthcare advocate have helped her through her cope with PM and treatment-related issues. She is passionate about helping others become knowledgeable about their health issues and empowered to become their own healthcare advocate.
Sandy left the corporate world in 2008 to become full-time caregiver to her parents for the last years of their lives. Prior to that she worked in the printing, paper, facilities and multifamily housing industries in conference and project management capacities and as a contractor with US Environmental Protection Agency, where she researched and wrote about manufacturing products using recycled materials. She has also been an active volunteer with several organizations.
Sandy has called California, Virginia, Louisiana, Florida, and North Carolina home, and she and her Texas-born husband, Andy, currently live in the Raleigh area. Her two children, three grandchildren and three stepsons live in North Carolina, Oregon, Washington and England, providing lots of travel opportunities.
Sandy continues to be involved with MSU behind the scenes focusing on education, research, writing and patient empowerment.
Meet our Medical Advisory Committee
Dr. Tae Chung, MD
Dr. Tae Hwan Chung is an assistant professor of Physical Medicine and Rehabilitation and Neurology at the Johns Hopkins University School of Medicine. His areas of clinical expertise include neuromuscular disorders and physical medicine and rehabilitation.
With combined training in neuromuscular medicine and in physical medicine and rehabilitation, Dr. Chung is uniquely positioned to provide a wide range of services, including diagnosis of various neuromuscular conditions, electrodiagnostic procedures, neuromuscular pathology, immune treatments and rehabilitative treatments. Clinically, Dr. Chung is particularly interested in rehabilitative treatments and therapeutic exercise of various neuromuscular diseases, especially myositis and other forms of muscle diseases. Dr. Chung runs a multidisciplinary rehabilitation clinic under the Myositis Clinic with the Johns Hopkins neuromuscular rehabilitation team, which he helped develop with physical, occupational and speech therapists, who are dedicated to helping patients with rare neuromuscular diseases. For his research, he investigates the effects of aging on the neuromuscular system in collaboration with his mentors in geriatric medicine and neurology.
Dr. Chung is in the NIH-funded phase of RMSTP (Rehabilitation Medicine Scientist Training Program) from AAP (Association of Academic Physiatrists), and was recently awarded with The Richard S. Materson Education Research Fund (ERF) of the Foundation for Physical Medicine and Rehabilitation.
Dr. Chung earned his M.D. from the Catholic University of Korea. He completed his residency at Johns Hopkins and performed a fellowship in neuromuscular medicine at Johns Hopkins.
Vicky Starr, RN, IgCN
We are excited to welcome Vicky Starr as a member of our Medical Advisory committee. We asked Vicky to provide us her thoughts on being a part of MSU and below is her response.
I believe I can bring empowerment and knowledge to the Myositis community. Being a Registered Nurse for over 29 years and a certified IgCN, I believe I am in an excellent position to help the members of Myositis Support and Understanding in a number of ways.
Being actively involved with this disease for many years, I will work with patients, physicians, and other healthcare providers to ensure they gain the knowledge they need when dealing with a rare disease that often does not get the attention it deserves. I have always put patients first so joining MSU was “in the cards” so to speak as MSU is a patient-centered nonprofit organization that was founded on the principles of education, support, and advocacy with a “Knowledge In Action” attitude.
I will work to empower patients to help them understand so they can make informed decisions while also providing them with information available on the latest treatments. I will work to help patients and their families to make educated decisions about their care.
I will also share fact-based information on exercise, laughter, diet, and medications to optimize the health of the family unit.
I am excited to be a part of this new chapter for Myositis Support and Understanding, and I thank them for nominating me to the committee.
Meet the Admins of our Support Groups
Sarah Harrington, MSU Lead Group Admin
Sarah lives in a small town in Massachusetts with her husband of many years. She enjoys spending time with her family and early morning walks with her neighbors. Diagnosed with dermatomyositis January 2014, both skin and muscle involvement, she was able to progress to accomplishing her first 5k October 2014.
Sarah now works part time and is planning an early retirement. Her current title is “IT Architect”, designing applications and business solutions. She wears many hats in her position including team lead and project management.
She is curious about myositis illnesses, having compassion for those who suffer, and an avid cheerleader for wins.
Mary Jane DeLauder, IBM Group Admin
MJ DeLauder was born and raised in Hagerstown MD. After several attempts at obtaining her Nursing degree (interrupted by the birth of her 3 sons and the raising of same), she finally graduated in 1983 in New Jersey with her AA and RN. After several years as a Psych nurse, she moved on to Managed Care for Prudential followed by Occupational nursing at Nabisco.
She was diagnosed with ALS in 1994 after a fall. That was revised (thank you very much) to Polymyositis and later Sporadic Inclusion Body Myositis. The progression has been very slow. She and her husband, Dick, retired to Florida in 2001.
She served on The Myositis Association Board of Directors from 2008-2009. She is adamant about keeping her weight down, exercising and maintaining a positive attitude.
MJ and Dick (her husband and full time Caregiver) have been married for 51 years. They have three sons, three daughter in laws, four grandchildren and one great granddaughter and a one year old black therapy cat named Diva!!. They are very happy with the Florida weather because MJ doesn’t gripe about the boots, and coats and heavy clothing to weigh her down!
Sandi Dye-Clark, MSU Group Admin
Sandi was diagnosed with dermatomyositis March of 2014. Right away Sandi made it her mission to learn everything she could about myositis. She attributes online communities for her knowledge she has today.
Sandi and her husband of 33 years have lived in six states and 10 cities before settling in a suburb of Austin, Texas where they now call their forever home of 15 years . Sandi holds a degree in Elementary Education from the University of Oklahoma and is a Registered Dental Assistant and Hygienist. Although Sandi went to school ( several times ) she was always a stay at home mom.
Sandi enjoys spending time with her family, gardening , bird watching, cooking, and photography. During the day you will find her watching her 2 grandchildren while their parents work and cherishing every memory made together. Most important things in Sandi’s life are God, family, and friends.
Marilyn McGrath, MSU Group Admin
Marilyn is from Troy, a small town in upstate New York, just outside of Albany. She has been married to her husband, Ed, for over 39 years and has three grown children and five beautiful grandchildren, the loves of her life.
Marilyn worked for over 30 years in the Administrative field. In 2006, she left her full-time position as Human Resources Manager of a local General Electric Company to stay home to care for her newborn granddaughter, fulfilling a promise she made to herself and her children that her grandchildren would spend their preschool years in the loving care of family. However, it was not meant to be. Later that year Marilyn was diagnosed with Lupus and eventually Dermatomyositis. She managed to continue to care for her two older grandchildren, but as the disease progressed, Marilyn was unable to care for her youngest grandchildren. In 2011, Marilyn was approved for long term disability.
Marilyn’s love is for her family, reading, scrapbooking, and travel (especially to the ocean). While her disease has placed limitations on her ability to travel, including sun avoidance, Marilyn has found new ways to adapt and manage, still enjoying life to the fullest. Marilyn has learned that research, preparation, and planning are the keys to success with this disease. She and her husband enjoy going to the movies on the weekends and cooking Sunday dinner for her family.