National Emphysema/COPD Association Membership Meeting
October 29, 2002, 1:30 PM to 4:30 PM
American
Lung Association of Metropolitan Chicago
1440 W Washington Boulevard
(Washington and Ogden)
Contacts
Hannah Hedrick,
lornanumber1@aol.com (National Emphysema/COPD Association)
Kitty McAndrews,
kmcandrews@alamc.org and Maureen Damitz (American Lung Association of
Metropolitan Chicago)
Daryl Isenberg,
dipeace@aol.com (Illinois Self-Help Clearinghouse) Status Report and Invitation to Participate
NECA Receives 501c3 “Advance Ruling,” Effective from
October 23, 2001 to December 31, 2005
On August
26, 2002, Attorney Bob Hite informed NECA Board members that the Internal
Revenue Service
had issued an “advance ruling” announcing that NECA “meets the criteria
for a tax exempt organization
as described in Section 501c3 of the Internal Revenue Code.” As long as
NECA continues to operate in
the manner described in the IRS application, NECA will be treated as a
501c3 tax-exempt organization
from October 23, 2001, to December 31, 2005, regardless of the final determination.
NECA’s first sizable donation tied to receipt of 501c3 status was from
Sree Nair’s National Emphysema
Foundation.
Medical Advisory Board
Byron Thomashow, MD, and Tom
Petty, MD, are co-chairing the Medical Advisory Committee (MAB),
with coordinating assistance from NECA President Barbara Rogers. Dr. Thomashow
is serving in
the NECA Board position that goes with the MAB chair position.
Patient/Family Advisory Board Seeks Additional Patients and Family Members
Linda Marshall
is serving as chair of the Patient/Family Advisory Board (PFAB), with
coordinating
assistance from NECA Vice-president Hannah Hedrick. PFAB is dedicated
to making patient-centered
care a reality by mobilizing and facilitating patient/family participation
in all aspects of NECA.
See Patient/Family Advisory Board—October 2002 for the objectives and
responsibilities and for
a list of PFAB members.
NECA Encourages Individuals and Organizations to Become Members
I.
Individual Member Annual Fee: $25, $15 fixed income; $100 “Century Member”
II.
National Organization Member Annual Fee: $250, $1000 “Century Member”
III.
Regional Organization Member/Constituent Group Annual Fee: $100, $400
“Century Member”
IV.
NECA National Partners: Individual gift/grant for specific projects or
as unrestricted educational grant
NECA Seeks Support for its Self-Care/Peer Support Program
and Patient
Group Directory and Resource Guide
NECA’s Self-Care/Peer
Support Program
will involve patients and families in
identifying
activities and materials to help achieve and maintain a high level
of health and well-being.
Patients will be involved in all aspects of
developing, evaluating, and revising content and
format.
The program will include
suggestions and resources for finding “peers” to support participants
health-seeking
efforts.
A nationwide planning group is being
established to design a program of safe, effective,
easy-to-learn, self-care techniques for the spectrum of emphysema/COPD disease
stages.
Patients and family members, in cooperation with research and health care
professionals,
will test program components in self-help groups and a national patient and
professional
meetings. At the same time, NECA will seek funds to present the content in
self-instructional
modules in various formats.
After review and approval by health, educational, and media experts, materials
will
be offered to NECA members, self-help groups, and others. The basics of the
Self-Care/Peer
Support Program will be included in NECA’s Emphysema/COPD Patient Group
Directory and
Resource Guide.
Self-Care Content Areas
1.
Breathing techniques (meditative and medical)
2.
Basic principles of/techniques for achieving adequate hydration,
nutrition, and rest
3.
T’ai chi chih
(Joy Through Movement), mindful walking, yoga (land, water, chair, bed
versions), and dancing
4.
Meditation and relaxation techniques (standing, seated, lying down, in
water)
5.
Healing touch techniques that can be adapted for group participation and
that patients and their families can learn and use on each other
6.
Importance of service, intimacy, and spiritual practices
Peer Support Resources
Suggestions for several levels of personal support will
be included in the
resource section of the Emphysema/COPD Patient Group
Directory and Resource Guide.
1.
How to develop an effective “buddy system” to support a specific behavior
(including compliance with treatment and rehabilitation regimens)
2.
How to access and find appropriate local or national self-help/peer
support groups
(peer-led or professionally-led, freestanding or sponsored by a
health care facility)
3.
How to use online peer support resources
4.
How to identify local and nationwide resources that strengthen peer
support
mechanisms, including suggestions for developing groups and networks
Assistance is needed
to (1) coordinate collection of consistent information,
(2) enter collected data in a relational database, (3) print a quality
publication,
and (4) post information on NECAcommunity.org and other websites.
The final print/electronic publication, anticipated in early 2003, will be the
first
major national tangible NECA "outcome."
NECA is also seeking assistance in coordinating/developing the unique
Self-Care/Peer
Support Program. Specific tasks include conducting various searches and
developing
outlines of the separate but related modules for all components of the program:
breathing, hydration/hydrotherapy, nutrition, rest, activity/movement, service,
intimacy, and spirituality.
Emphysema/COPD Community-Building Meetings (National
and Regional)
NECA’s first national
Emphysema/COPD Community-Building Meeting was conducted May 19, 2002, in
conjunction with the annual international meeting of the American Thoracic
Society.
NECA’s first regional community-building meeting was hosted by the American Lung
Association of Metropolitan Chicago on August 19. Information about the outcomes
of these meetings will be shared at the October meeting of the American
Association for Respiratory Care in Tampa and the November meeting of the
American College of Chest Physicians in San Diego.
Chicago was also the site of the second regional meeting, with a session for
patients and patient groups and a NECA membership meeting on October 29 and a
general community-buiLding meeting on October 30.
The
national and regional Emphysema/COPD Community-Building Meetings are focusing on
identifying needs and developing “mutual aid” techniques and programs for
meeting them. Support is needed for the meetings themselves and for sponsoring
attendance by patients and family members (local, except for PFAB members, to
keep costs down).
Current
plans for 2003 meetings include expanding existing relationships with ALAMC and
other lung associations; with organizations represented on NECA’s Board, Medical
Advisory board, and Patient/Family Advisory Board; and with organizations
participating in community-building meetings. In addition, we will contact the
following categories of organizations to assess interest in hosting, sponsoring,
or participating in emphysema/COPD community-building activities:
Ø
Patient groups, coalitions, and
clearinghouses
Ø
Professional societies related to
respiratory care/pulmonary care/rehabilitation
Ø
Health care institutions/lung
centers/rehabilitation centers/research centers/transplant centers
Ø
Educational institutions
Ø
Corporations (home health,
pharmaceuticals, durable equipment, etc)
Ø
Public health agencies (NHLBI, HHS
regions, departments of health, tobacco prevention/cessation programs)
Ø
Foundations, not-for-profit
Ø
Communications agencies
Ø
Other: Groups on aging, AARP, Ad
Council
NECA would appreciate suggestions,
sponsors, partners, etc.
National Emphysema/COPD Association Membership Meeting
October 30, 2002, 9:00 AM to 4:00 PM
American
Lung Association of Metropolitan Chicago
1440 W Washington Boulevard
(Washington and Ogden)
Preliminary Agenda
8:00
AM Healthy activity, informal socializing
9:00-10:00 Panel/Report of patient group
outcomes and tentative agenda for February 2003 patient/patient group session
10:00-11:00 Prioritize patient and
patient group needs and interests and determine strategies to:
q
Communicate to the emphysema/COPD
community the important aspects of support groups
q
Help NECA and
attending organizations serve as resources for patients and patient groups
q
Involve
patients in self-help groups or networks or other organizations promoting
patient empowerment
q
Provide
leadership training and support programs for group leaders, including guidance
on how to develop programs for “professionals” wishing to work with patient
groups
q
Develop
specific collaborative projects for 2003 to empower patients
Prioritize patient concerns needing coordinated
advocacy, such as:
q
Competitive Bidding
(Background information at
http://www.hcfa.gov/research/dmebid.htm. The Medicare Modernization and
Prescription Drug Act of 2002, HR 4954 Section 511, requiring that
competitiveness be maintained, can be found at
http://thomas.loc.gov/and by typing in Bill Number HR 4954.)
q
Portability and travel
q
Ongoing National COPD Month
q
Culturally Appropriate Care
q
Early detection: “Test Your
Lungs, Know Your Numbers” (NLHEP)
11:00-11:15 Break
11:15-12:00 Reports from NHLBI Lung Division, US COPD Coalition,
and NLHEP, followed by discussion to help attendees understand how
these major umbrella organizations relate to/support their efforts
12:00-12:30 NECA Status Report summary and invitation to
participate
12:30-2:00 Healthy activity options, lunch, socializing
2:00-3:00 Attendee organizations report on their major patient
empowerment, education, and support programs and develop strategies for
collaboration
3:00-4:00 Use a participatory method to identify collaborative
priorities and specific goals/activities
Suggestions:
Ø
Organizing a
patient/patient group “day” for the 2003 US COPD Coalition meeting in
Washington, DC
Ø
Developing an
ongoing structure for planning for future Midwest Community-Building Meetings
Ø
Scheduling
meetings of professional associations, educational & research institutions,
health care facilities, public service agencies, corporations, etc, to
strengthen patient education and support programs and materials
| 