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Multiple Sclerosis in Hawaii
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2/3/2018
When: Saturday, February 3, 2018
8:30 AM
Where: Prince Waikiki
100 Holomoana Street
Honolulu, Hawaii  96815
United States
Contact: Cindy
214-645-9165

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MISSION: A collaborative grassroots effort aimed at improving health and well-being through education
regarding disease state, acute and long-term therapeutic options, symptom management, and recent
scientific advancements for the underserved population of patients, families, and caregivers in the state of
Hawaii affected by multiple sclerosis.


OVERALL GOALS:


1. To provide the state-of-the-art education regarding the cause of multiple sclerosis, anticipated disease
course and available treatments for multiple sclerosis in the state of Hawaii.
2. To offer the multiple sclerosis community the opportunity to learn about available acute treatments for
relapses and available treatments for long-term management.
3. To provide an update on recent scientific advancements related to the diagnosis, surveillance, and
treatments related to myelin repair and restoration.

HISTORY: Multiple sclerosis (MS) is an unpredictable, chronic, often disabling disease that affects the
central nervous system (CNS), which is comprised of the brain, spinal cord, and optic nerves. Within the
CNS, the immune system attacks myelin - the fatty substance that surrounds and insulates the nerve fibers -
as well as the nerve fibers themselves. When myelin is damaged or destroyed, the ability of nerves to
conduct electrical impulses to and from the brain is disrupted, producing the various symptoms of MS. The
cause of MS is still unknown. The progress, severity and specific symptoms of MS in any one person cannot
yet be predicted. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to
three times more women than men being diagnosed with the disease.


PURPOSE OF GRANT


ISSUE TO BE ADDRESSED/TARGET GROUP


Reaching the Underserved Population Affected by Multiple Sclerosis
Estimating the number of individuals affected by MS in a given State or, more specifically, a Cultural
Community, is complicated due to a cultural group’s belief about health and illness. When one person may
seek treatment from an urgent care center, another might consult a shaman, take acupuncture or do
nothing.


Poverty, lack of healthcare coverage or underinsurance also affect access to information, education, and
treatment. Hawaii’s Indicator Based Information System (IBIS) reports that nearly 16% of the Hawaiian
population have no healthcare access or have a personal doctor. This population has not been exposed to
the wealth of knowledge that exists nor the technological advantages available to the general public.
Providing state of the art education to a cultural community is a challenge. How do you deliver information
to a population hesitant to learn? One of the best ways to reach people, is to speak to them in a manner
which is culturally acceptable and relevant to them. We propose to offer a free community healthcare
event to provide information, resources, medical care and research opportunities to people from an
underserved cultural community, to a degree which has not previously been provided.


PLANNED ACTIVITIES


1. Town Hall ForumThe Department of Neurology and Neurotherapeutics at UT Southwestern will host a one-day health fair
inviting both the general public and healthcare providers. A Town Hall Forum format will not only give the
attendees access to leading authorities in the area of Multiple Sclerosis, it will give them a voice to share
their concerns, express their needs, and connect with experts both nationally and from their cultural
community.
2. Fitness and Lifestyle
Recreational and Physical Therapists as well as Advanced Practice Providers will offer classes on lifestyle
management, fitness, and diet. The instructors will answer lifestyle questions from participants and provide
information and resources.
3. Research
Members of the Research Team will provide information on research opportunities. Those interested will
be invited to participate in a National MS Biorepository. Screening and enrollment will take place on site by
approved and qualified Research Staff.
4. Information
Participant demographic information will be gathered in a RedCAP database and will be made available to
the sponsors, who will be allowed to provide information to the participants through email or mailings.


TIMELINE


Public announcement – September 2017
Invitations will be mailed via postal service to Healthcare Providers in Hawaii – December 2017
Invitations will be mailed via postal service to subjects identified with MS – December 2017
Event will take place – January 2018
Community Surveys will be mailed to event attendees – February 2018


OTHER PARTICIPATING ORGANIZATIONS AND OTHER PROVIDERS OF THE SERVICE IN THE COMMUNITY


Organizers have established a number of solid community connections to ensure the program is relevant
and welcoming to the cultural population. They will be guided by outside experts as well as key individuals
from the local community to help determine strategies and useful outreach techniques.
National MS Society Pacific South Coast Chapter: They will publicize the initiative in their newsletters and
on their website. Their members and staff will be invited to participate in the planning process and
meeting activities.


Community Healthcare Providers: The providers and their staff will participate in the planning process,
identify patients and families affected with MS, and will tell patients directly about the event.
Hawaii Medical Association: The Association will publicize the initiative in their newsletters and
announcements. They will provide assistance in identifying healthcare providers interested in attending or
participating.


SOURCES / STRATEGIES FOR FUNDING


Corporate sponsors for the program for which grant funds are requested include Biogen, Mallinckrodt
Pharmaceuticals, Merck/EMD Serono.


EVALUATION

A projected 400 people will attend the event, speak with medical professionals, and receive valuable
information on MS-related topics designed to increase awareness, access healthcare, and improve quality
of life.


All individuals participating in the event will be contacted at least once, and receive a community survey to
measure the impact of the program on community attitudes toward nutrition, wellness, exercise and
neurological diseases.


References:
1. Estimating the prevalence of MS, National MS Society.
2. Hawaii’s Indicator Based Information System (IBIS).

The Consortium of Multiple Sclerosis Centers

3 University Plaza Drive, Suite 116 Hackensack, NJ 07601

Tel: 201.487.1050 | Fax: 862.772.7275

info@mscare.org