Rebekah is a passionate Myasthenia Gravis patient who brings her unique vision for education coupled with awareness and experience as an international patient advocate, educator and supporter. She remains intimately involved in the Myasthenic community locally in the support group she co-teaches and globally on her international Facebook page, Myasthenia Gravis Unmasked where she focuses on teaching patients about their disease, how to handle clinical encounters, decreasing inpatient risks, offering emotional support and much more. She also founded and runs a private support group for parents with MG, offering a safe place for patients with children to come and find mutual respect, understanding and a place to learn and grow together.
Rebekah believes that, in order to transform the future for MG, we must first change the perception both in the clinical and lay communities. Her goal is to radically change the conversation, education and stigmas that surround the community in order to foster true hope and tangible reformation. Her personal experience with MG blends with her years of local and world wide community service and continues to grow. She currently serves as an international clinical advocate, WEGO patient health expert, support group leader, media content creator and has volunteered as a walk event coordinator, national grassroots ambassador, and fundraising coordinator. Rebekah has also had the privilege of collaborating with highly reputed pharmaceutical, medical, marketing and research organizations in combined mutual efforts to further serve the MG community.
She earned a Bachelor of Arts in communication in 2015 from Regent University and is a published freelance writer on chronic illness.
Stan is a retired Vice President for MasterCard Worldwide. A New York native, he retired and moved to Florida in 2010 to enjoy the laid back atmosphere and golf. It was during a round of golf one day in 2012 when Stan came face to face with what he later discovered was Myasthenia Gravis. He is a proud father and grandfather, and has traveled the globe both professionally and personally. He brings a unique amalgamation to the table as he couples his extensive personal insight with MG with his professional skills and experience.
Stan earned a Bachelor of Science in finance from California State University Fullerton and an MBA from Marymount University.
His vision for the Myasthenia Gravis community is to focus on clinical education where an unfortunately large population of the medical community is not appropriately trained or exposed to MG, in order to help produce safer outcomes for patients.
Allan is originally from the greater Boston area, where he began an engineering career with AT&T Bell Laboratories. Allan later launched and operated his own technology company providing engineering services to local industries; his most memorable project was working with the Smithsonian Astrophysical Observatory on the camera and ground equipment for the Chandra X-Ray Observatory. From there, he continued to carry his success in project and corporate management to other companies and startups, which is what ultimately led him to Florida. Allan has since transitioned from technology but continues to use his management and leadership skills as a Real Estate Broker at AmeriTeam Realty in Orlando, Florida, where over 230 agents look to him for training, support, and guidance.
Although Allan loves the challenges that come with business and leadership, he has continually been drawn to altruism through volunteer efforts with his family, in his community, and now through joiningour own MG Hope Foundation.
Allan’s vision for the Myasthenia Gravis Hope Foundation is to focus on development and growth opportunities that will strengthen our organization to the benefit of those we serve in the MG Community as a whole.
David Dorr has been a dedicated caregiver to his mother, who has Myasthenia Gravis, for more than twenty-five years and more than five years for his daughter, who also has MG. His tireless efforts have offered him an exclusive behind the scenes look at the particular needs and issues that face the caregivers of the MG community.
David earned a Bachelor of Arts in political science from Wheaton University and is the President of Designer's Choice Florals. He has considerable experience in accounting, and as a business analyst, marketing coordinator, think tank director and entrepreneur.
His vision for the Myasthenia Gravis community is to provide a much needed support system for the oft forgotten caregivers and provide tools to help them find security in education and community.
Born in South America, Barbie moved to New York City more than thirty years ago and worked for Merrill Lynch for eighteen years. During her time in corporate America, Barbie plugged into an outreach ministry for the homeless and disadvantaged. Her heart fell in love with those whom she was serving so when she moved to Florida, Barbie engaged full time in outreach ministry for the homeless and families who are struggling to stay off the streets.
She is also involved as a caregiver to a Myasthenic family and has a devotion to seeing the MG community thrive.
Her vision for Myasthenia Gravis is to see the growth of family and community support for all who suffer with this disease.
Melinda Whetstone has a background in consulting, research, and education. She has spent the past several years researching the use of personal and electronic health records in medical care and teaching in her health informatics courses about the importance of collecting quality data in order to ensure it can be used for sound decision making.
Melinda primarily focused on the use of health technology for adults with Type 2 diabetes, but recently found that she had to quickly learn about Myasthenia Gravis when a family member was diagnosed following a severe Myasthenic crisis that required prolonged intubation. Her role as an advocate and caregiver served to fuel her passion for research and the topic of using technology to improve health and care management. She looks forward to sharing her insights.
Melinda earned a Ph.D. in health informatics from Florida State University, a master’s degree in biomechanics from University of Maryland, and bachelor’s degrees in exercise science and athletic training from Miami University of Ohio. She has taught for several major universities in the Southeast, co-authored a book chapter, and published in health care and health technology journals.
Her vision for Myasthenia Gravis is that patients receive timely diagnoses, support to become informed partners in managing their disease until a cure is found, and access to safe, effective, and quality care.
James L. Sheets, Pharm.D., is a partner, founder and CEO for CSI Pharmacy. He has a passion for developing clinical programs that add value to the homecare setting for infusion patients. He earned his Doctor of Pharmacy degree from the University of Arkansas for Medical Sciences, College of Pharmacy. His pharmacy experience includes practice in community, hospital, nuclear, compounding, and the home infusion settings.
James has over 15 years’ experience working with Immune Globulin (IG) Therapy and administration in the home. He is an active member of the Immune Globulin National Society (IgNS) and National Home Infusion Association (NHIA). He contributes as a member of the IG standards Committee for IgNS. He also serves as a board member on the Managed Health Care Associates (MHA) Alternate Site Advisory Board. Most recently, James has been appointed to the medical advisory board of the Myasthenia Gravis Hope Foundation.
James has a passion for IG Therapy and for the disease states it is used in. He serves as an expert speaker in the use of Immune Globulin Therapy for different diseases before professional and patient organizations. James’ goal is to make a positive difference in the lives of others and he views the patients he works with as members of his family…the CSI Pharmacy Family. He is passionate that all patients’ therapies should be individualized to meet their specific needs. James enjoys sharing knowledge and helping others through supporting and hosting local, regional, state and national patient organizations. He frequently speaks at local Myositis Keeping in Touch (KIT) meetings and Myasthenia Gravis patient support group meetings in the various regions across the nation. He often remarks that the people he meets at these groups are truly inspirational and that they motivate him to grow and improve as a person.
In addition to his pharmacy degree, James is certified in Sterile Intravenous Compounding and has his Nuclear Pharmacy Education from the University of New Mexico Health Science Center. He has received special recognition by the American Chemical Society (ACS) and the Arkansas Academy of Science for his research work in medical chemistry, in which he studied the chemical structures of carcinogens. He was a recipient of the Nelson Voldeng Research Fellowship at The University of Arkansas for Medical Sciences. He is also the recipient of several awards and honors for his leadership and outstanding academic achievement.
Genice is a mother of two children, a skilled nurse and a Myasthenia Gravis patient. Raised in New York City, she began her career in management. Dedicated to helping others, Genice pursued nursing in order to bring support and healing to those who neded it most. After graduating from Florida Hospital College of Health Sciences, she started her nursing career as a critical care nurse. Genice works as a traveling skilled nurse throughout Florida and occasionally California and New York where she is also licensed. In addition, Genice has extensive experience working in fertility, pain management and emergency physician clinics.
Genice has been accredited by the American Nurse Credentialing Center (ANCC) for Myasthenia Gravis Education.
After becoming critically ill in 2016 Genice’s knowledge and compassion not only came from extensive training and patient encounters, but that of her own personal experiences with Myasthenia Gravis. Moments of paralysis that are unpredictable and inconsistent makes this rare disease baffling, often under diagnosed and challenging to treat. She is a firm believer that, with appropriate intervention and increased knowledge, patients can have improved outcomes.
She brings her expertise, experience and passion to serve others in the unique role of both patient and clinician.
Her vision for the Myasthenia Gravis community is is to be a resource between healthcare professionals, caregivers and the Myasthenia Gravis community in helping to gain understanding, live a better quality of life and manage disease through improved developmental education materials and more positive, safe and appropriate clinical practice.
Cory Hughes, began his career in 2012 and has extensive experience in the emergency room and on an ambulances.
He earned his EMT certificate from the Central Florida Fire Academy and his Paramedic certification from Orlando Medical Institute. He also obtained his ACLS (Advanced Cardiac Life Support) PALS (Pediatric Advanced Life Support) and his PHTLS (Pre-Hospital Trauma Life Support).
Neurology has been a core focus of study and interest throughout his education and training, fueling his vision to improve the effectiveness, education, training and awareness of EMS services for our patients with Myasthenia Gravis to help ensure safer emergency encounters.
Erin Brantley has been a practicing physical therapist since earning her Master’s degree at the University of Alabama at Birmingham in 1993. The first ten years her work focused on orthopedic therapy, but during that time she also obtained a certification in Lymphedema Management and assisted in a Pulmonary Rehab Program.
With a goal of being more available to her family, she then transitioned to a home health agency covering a largely rural area treating people with a variety of therapeutic needs. For the last 6 years she has found her passion working in a private practice clinic that specializes in Myofascial Release.
However, all work came to a screeching halt in January of 2017 when Myasthenia Gravis made it impossible for her to walk greater than 50 feet with a rolling walker without stopping to rest and unable to use her arms well enough to shower or dress, let alone to be able to treat patients. The diagnostic process was particularly frustrating due to knowing the muscle weakness and fatigue she was experiencing was real and not typical of any diagnosis she has encountered previously.
Thankfully through a network of excellent physicians the diagnosis was made. 0nce the proper medications were started she has responded well and is now slowly returning to the work she loves.
Her vision for the Myasthenic community is to continue learn alongside the patients and their families and to educate other therapists in the many presentations of Myasthenia Gravis, enabling them to properly participate in the rehabilitation needs of those who are challenged by this diagnosis.
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