The Rachel Esther Myasthenia Gravis Foundation concentrates its activities on public education and grants for the benefit of children and teens diagnosed with MG and on grants to MG researchers.
Our current and planned programs include the following:
Educational Pamphlet
We will create and distribute an educational pamphlet for children and teenagers diagnosed with Myasthenia Gravis. The pamphlet will provide information about the symptoms, diagnosis, and treatment options relating to MG. The pamphlet will be distributed nationwide to doctors and other healthcare professionals involved with neuromuscular diseases including MG.
Support Group
We plan to operate an online support group for teens with MG, led by a health care professional. Being a relatively obscure disease, MG support (diagnosis, treatment, follow-up) is typically concentrated in cities with large medical facilities such as Boston and New York. The online support group will extend MG support to areas beyond these centers and enable patients to remotely interact with MG healthcare providers. The support group will be developed and led by a health care professional and will meet once per month.
Grants
An important goal of ours is to provide grants to medical researchers involved in MG diagnose and treatment.
Transportation Stipend
We are also planning to implement a transportation stipend program to defray the cost of transportation between school and the treatment facility after a Thymectomy (an in-patient surgical procedure performed on MG patients). The fatigue generated by traveling via bus or train increases the likelihood that children and teens will miss school. The transportation stipend will provide for taxi/car service to greatly reduce or eliminate travel fatigue and the associated absence from school.
Equipment & Furnishings
The Rachel Esther MG Foundation plans to make grants for the purchase of medical equipment to be used for diagnosing and treating MG patients. Chronic fatigue is a characteristic of MG. Our goal in providing diagnostic and treatment equipment is to reduce the fatigue and expense experienced by MG sufferers that accompanies travel to and between the health care facilities where the diagnostic equipment is located. In addition, the health care providers will have immediate answers to some of the presenting symptoms instead of having to wait for tests to be schedule and performed at other facilities.
Generally speaking, teenage MG patients are treated in the pediatric neurology wards of hospitals and clinics. By and large the examination and waiting rooms are fitted and decorated with young children in mind. The purchase of furnishings and other infrastructure suitable for teens will improve the quality of their visits.