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The Lou Gehrig’s Disease
Association of Southwest Florida, Inc. (LGDA) was incorporated as
an IRS recognized 501 (c)3 not for profit corporation in May 2000 and
is based in Sarasota, Florida. Our mission is to promote public awareness
of amyotrophic lateral sclerosis, ALS, in an effort to raise funds to
provide services to ALS patients and their families, and to assist researchers
in finding a cure for this disease.
Unlike other ALS organizations,
the Lou Gehrig’s Disease Association of Southwest Florida (LGDA) has
established its primary mission as assisting and supporting ALS victims
and their families. The disease leaves in its wake mental trauma, financial
ruin, and emotional devastation. Since there is no cure for this
devastating disease, our friendships established with those with ALS
are typically short lived. It is that legacy of friendships that creates
the interest and drive in the LGDA board members to provide whatever
help, whatever friendship, whatever assistance we can to the victims
of ALS.
BOARD OF DIRECTORS
LGDA is governed
by an elected Board of Directors consisting of prominent men and
women from the business and medical communities. This group of experienced
and dedicated professionals volunteer their time and energies to
helping those persons with ALS and their families. Board meetings
are held monthly to review the activities of the Association, to
set policies and procedures and to guide the efforts of the Association’s
standing committees.
Board Members:
Richard A. Brooks
David Foran, C.P.A.
Cheryl Gordon, J.D., C.P.A., LL.M.
Susan Haggard, C.C.I.M.
John E. Jorgensen
James A. Watkins, PE
Vicki L. Watkins
Mary Ann Wilde
Lori Connon, MA, CCC, SLP
Kathryn price, M.D.
MEMBERSHIP AND FUNDRAISING
ACTIVITIES
The
financial impact on families caring for a loved one with ALS is
tremendous. Considerable efforts will be made over the next twelve
months to increase ALS public awareness and to raise sufficient
money to provide us a secure financial base. Only through the generosity
of individual donors and members, and the success of LGDA fund-raisers
can we continue to meet the desperately needed services of our ALS
community.
PATIENT AND FAMILY SERVICES COMMITTEE
This committee is
responsible for providing needed services to ALS patients and their
families through programs such as support groups and referrals.
They are also responsible for maintaining an inventory and loaning
out durable medical equipment and devices that the Association owns.
The committee can also recommend direct financial assistance to
patients or their families.
PUBLIC EDUCATION/AWARENESS COMMITTEE
This committee is
responsible for educating the general public regarding ALS and the
activities of the Association. Their work is tied closely with public
outreach programs, LGDA membership drives and fundraising events,
and the committee maintains close contact with other Florida and
national organizations involved in fighting neuromuscular diseases.
DEVELOPMENT COMMITTEE
This committee is
responsible for the planning fund-raising programs as well as developing
and initiating methods of encouraging enrollment of new LGDA members
and renewal of membership. The committee stays informed about the
fund-raising activities of the community and seeks to participate
whenever possible.
MEDICAL ADVISORY BOARD
The role of the Medical
Advisory Board is to support the mission of LGDA by providing advice
relating to LGDA services and programs, by facilitating contacts
within the medical community, and by providing information on the
care and treatment of ALS patients. The Board consists of respected
medical doctors and psychologists who are experts in the treatment
of ALS.
ALS PATIENT AND CAREGIVER
SUPPORT GROUP
The
Support Group provides a caring and compassionate environment that
fosters emotional support and personal interaction among patients,
caregivers, and health care professionals. A wealth of information
is shared at each month’s meeting and includes guest speaker presentations
to ensure our members receive the very latest information. Group members
learn they are not alone nor are they without help or hope.
HAROLD L. WILDE LOANER
LIBRARY
The
LGDA maintains a loaner closet of items available to people with ALS
including durable medical equipment such as walkers and electric wheel
chairs, as well as sophisticated communication devices and BiPap machines.
These items are loaned out to people who have no insurance coverage
or funds to buy them.
ALS REFERENCE AND
VIDEO LIBRARY
To
help meet the information needs of our Support Group members, LGDA
maintains an active book and video reference library. The materials
cover such areas as inspirational stories, coping skills, symptom
management, caregiving, legal and financial guides, general health
and medical texts, as well as newsletters from prominent regional
and national ALS organizations and centers.
RESPITE CARE
LGDA
provides limited funding for respite care of critically ill patients
who could not otherwise afford it. Along with the creation
of a separate caregivers support group which will be designed to meet
their unique needs, we plan to expand our respite care program by
making this invaluable service available to more patients and their
caregivers. Designed to provide temporary relief to the primary caregiver
of the ALS patient, the program seeks to relieve stress and caregiver
burnout by providing "time off" to the caregiver for necessary
business and other activities. The LGDA will provide grants to caregivers
to pay for a home health agency, certified nursing assistant, or a
home health aid to provide respite care.
CAREGIVER SUPPORT
GROUP
As
membership continues to build, we plan to establish a second Support
Group directed at meeting the specific needs of the caregivers that
are often overlooked in coping with the stresses caused by this disease.
HOME VISITATION PROGRAM
Several
of our Group members can no longer attend Support Group meeting due
to the advanced stage of their disease. Their need for information,
support and social contact is more important than ever. We will assign
teams of volunteers and health care professionals to visit patients
at their home, to assess their needs, and to ensure they are taking
full advantage of LGDA and other community services.
PATIENT REIMBURSEMENT
PLAN
Persons
with ALS face a staggering financial burden that can be as devastating
to them and their families as the disease itself. While most patients
have good medical insurance that cover major expenses, there is a
wide assortment of incidental expenses not covered by insurance. Based
on the availability of funds, and the financial needs of the family,
LGDA may provide its Support Group members a modest reimbursement
for such non-covered expenses as assistive devices for the bathroom,
adaptive clothing, vitamins, and other items.
RESOURCE AND SERVICES
DIRECTORY
To
aid our members, LGDA has compiled a directory of physicians and service
providers that are of most interest to ALS patients and their caregivers.
The directory is intended to be used as a handy resource guide by
those that are new to our area and those needing various services
for the first time. Please click here
or on the link at left to access the Directory.
The services and programs
offered by LGDA are critical to persons with ALS and are not available
from any other source in our region. These services, when added to the
fine medical practices and businesses of our community, offer the ALS
patient a fully integrated and comprehensive care program.
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