Here is the article IN FULL - article 3...with survey results.
- From: "MicheleP" <michelempaiva@xxxxxxx>
- Date: 16 Jul 2005 13:48:29 -0700
You Are Not Alone; Lyme Organizations
If you have Lyme or just suspect you might, or if you just would like
more information on Lyme and related tick-born infections; you have an
invaluable resource in that there are Lyme organizations as close as
your computer or telephone.
One of the most well-known and all-inclusive Lyme organizations is The
Lyme Disease Association, ( www.LymeDiseaseAssociation.org ) (better
known as LDA, which a half a decade ago, expanded to a national level
in their nonprofit and outreach endeavors. Their dedication to Lyme
disease education and prevention has brought about esteemed
recognition, including that of the Journal of American Medicine.
Much needed, the fundraising aspects to keep research going to find
prevention, cures and remedies, is an ongoing undertaking.
In Worth magazine, a few years ago, many nonprofits were named and the
percentage per dollar that went to the mission of providing outreach
was displayed. Even out of the "best 100" that they named, many of
them dedicated as little as eight cents toward outreach and the rest
went to "Operational Costs" which often included flashy buildings
and grossly high salaries. However, the LDA devotes about ninety-eight
cents of every dollar to programming.
Being a nonprofit is not an undertaking for the weary. It's far
easier to open a for-profit business than a non-profit. Laws are
tighter for non-profits. In addition to the myriad of nonprofit law one
must abide and keep abreast of the revolving changes, there is also the
adoption of something fairly new -the urging to abide by some
traditionally for-profit laws.
Everything you didn't want to know about laws
Oh, and you thought this was going to be a tearjerker article about the
plight of the victim. No. It's going to be a wake-up call so that you
realize what these nonprofits are up against and why they need support
from you.
There are laws such as the 2002 McCain-Feingold Act (and anyone
interested in law, when an act is in introduced, there is usually a
grace period to comply - now in 2005, we can safely say that this
grace period has ended, if it existed, for this law) where soft-money
bans are enforced. The rationalization of this (in part) is that this
will stop some of the issue-based advertising that refers to specific
candidates running for federal offices in the final 60 days leading up
to an election. Although the Lyme associations are [usually] not a
political entity, they often have very strong political influences and
sometimes close ties or support of politicians. This means that
sometimes, they have to reject donations that may come from politically
influenced corporations or individuals.
It's hard to say no to money that you need; can you imagine if you
(and your children) were starving and were offered a thanksgiving
dinner- and you had to turn it down? You see how this can be a hairy
situation at best during any election period.
Another law of merriment is the Sarbanes-Oxley Act, passed in 2002 to
impose stricter reporting and accountability standards on publicly
traded companies.
Now, what the heck does this have to do with a poor little nonprofit?
Not much, except that although it does not directly apply to
nonprofits, it indirectly does.
That's a really nice way of saying to nonprofits, "We are looking
not only at Martha Stewart but you too, Pat Smith" (director of the
LDA).
So here we have, hypothetically and statistically, per nonprofit
responsibilities, Ms. Smith, doing the work of five (or more) people,
and needing to be MORE accountable than Ms. Stewart, who is sitting
around in designer overalls, yelling at her hired help to dye the damn
eggs with onion skin, and to start weaving baskets for next years
spring fling at the country house, while she sits and drinks fresh
lemonade squeezed her hired squeezer, a perky Frenchman named Frank.
It doesn't seem fair, does it? Meanwhile, Martha's costs can go to
Amish patchwork toilet paper to wipe her arse, and Pat's costs go to
programming, and not even Advil- to relieve headaches from
overwork....she works for free as do all of her staff.
This is a funky way of saying that nonprofits are not only demanded to
abide by their own set of rules in the game of life, but that they have
to live under what is known as the glass ceiling. So imagine the stress
of poor Martha or the Enron clowns...and then think of how easy their
lives are compared to any nonprofit director or key staff.
Why you need to donate
Programs such as the ones run by the LDA are very important. Without
them there would be a lot of Lyme Disease victims up the creek without
an antibiotic. LDA provides a full spectrum of outreach and support,
including referrals.
The outreach includes government communication and action, advocacy,
surveys, education outreach and more.
Here are two things to brag about for the LDA, that you may not
know...that they were generating and driving force, proven successful,
in the following laws in New Jersey.
P.L. 18A 35-5.1(1992) The Commissioner of Education, in consultation
with the Commissioner of Health, shall develop curriculum guidelines
for the teaching of information on the prevention of Lyme disease
within the public school health curriculum. The guidelines shall
emphasize disease prevention and sensitivity for victims of the
disease. The Commissioner of Education shall periodically review and
update the guidelines to insure that the curriculum reflects the most
current information available.
P.L. 18A 35-5.3(1992) The Commissioner of Education, in consultation
with the Commissioner of Health, shall also provide curriculum guides
for the training of all teachers who instruct students with Lyme that
emphasizes the special needs and problems of students with the disease,
in order to provide information about how best to teach those students.
Each school district shall annually provide training to all teachers
who instruct students with Lyme disease, based upon the guidelines.
You can browse their site; it's packed full of not only information
but also inspiration.
Another nonprofit making groundbreaking headway is the International
Lyme and Associated Disease Society, which Thank God, go by the short
acronym of ILADS.
They provide " a forum for health science professionals to share
their wealth of knowledge regarding the management of Lyme and
associated diseases.
ILADS is a nonprofit, international, multidisciplinary medical society,
dedicated to the diagnosis and appropriate treatment of Lyme and its
associated diseases. ILADS promotes understanding of Lyme and it's
associated diseases through research and education and strongly
supports physicians and other health care professionals dedicated to
advancing the standard of care for Lyme and its associated diseases."
Another fantastic local site (meaning statewide) is the California Lyme
Disease Association. They have a great site, and have a focus on best
practices for those who suffer from Lyme.
http://calda.intranets.com
Every region has a website or organization that you can contact: to do
a web search, for those who are not computer savvy, just place in the
search bar, your state and the word "Lyme" and you will get a
listing that will include at least one Lyme group. If not, contact a
larger organization to help you find someone close to your home.
It is with regret that I tell you that there are hundreds of support
groups not only nationally, but also internationally. Bittersweet, I
bring the tidings of the fact that although there is such support, this
is a dark silhouette of the reality of the suffering and wide breadth
of this issue.
You need nonprofit Lyme organizations, even if Lyme has not touched
you. Why? Because Lyme Disease effects our healthcare, insurance and
quality of life as a society. AIDs is still in the lead for infectious
diseases, but Lyme is a very close second. A little too close for
comfort.
Here is What You Had to Say
In a recent informal survey that I conducted, over 64% were female, and
over 82% were over 30 years of age. Over 80% have Lyme disease, of
them, 29% have had Lyme for less than five years, and 30% have had Lyme
over ten years.
Some of the largest areas of focus the participants wanted to see were
education for physicians, education outreach and more accurate
diagnostic testing.
There are the very things that your nonprofits are working on, and
working hard on.
When asked open-ended questions about what individuals would like to
see in the news, researched or brought to the open, here is what some
said.
"...$20k was paid out of pocket by my family when insurance refused
to pay for a legitimately necessary treatment multiple times... others
likely aren't as fortunate and can't afford treatments they need..."
"...That I have lost the last 15 years of my life due to be sick on a
daily basis. Chronic Lyme disease needs to be taken seriously and
seriously researched..."
"...delayed diagnosis due to uninformed doctors saying there is no
Lyme in my state. Others need to know it does exist so they will know
the importance of protecting themselves..."
"...The lack of understanding and knowledge about Lyme in the medical
world is preventing most patients from getting the appropriate testing
and treatment they desperately need..."
"...there are many actions that can be taken to control the deer herd
and the mice that are the carriers of lyme. At this point there is no
effort on behalf of towns, states of federal govt. to do anything..."
When asked to tell something the media and public need to know about
Lyme, the answers were varied but of the same thread - that Lyme
needs to be taken seriously and heard.
Some people responded with a health focus such as the following
participants.
"...That Lyme Disease is a DANGEROUS and can be Life threatening
illness. That Lyme disease is NOT always simply treated nor cured..."
"...Lyme disease can be chronic, congenital and ruin families..."
"...Tissue type of the individual can influence severity of
disease..."
While others were concerned about physicians lack of understanding and
knowledge about Lyme Disease.
"...Doctors don't know how to diagnose chronic lyme disease..."
"...Lyme is a complicated and often misunderstood disease. Like its
cousin the syphilis spirochete, Lyme can attack any body system and can
disable a patient with severe neurological & psychiatric symptoms..."
"...Lack of treatment or under treatment can result in a lifelong
chronic infection which can be debilitating and life-changing..."
While others were thinking of the politics of Lyme, such as these
folks:
"...National Healthcare inadequacies are costing taxpayers extra
money while degrading quality of life needlessly for Lyme
patients..."
"...Lyme disease is epidemic thought the US. CDC information that it
is primarily focused on the Northeast is wrong..."
Clearly, people have needs that are not being met and they need to be
heard. One of the best ways is to join forces with a nonprofit that has
the communication line open to other nonprofits fighting for the same
cause, as well as their hands in medical and political seats.
So, how can you help if you are ill and can't afford your meds let
alone a brew-ha-ha?
Well, you can donate some energy, when you have it. You can let
other's know that funds are needed to keep these programs going
strong.
The very best way you can donate is to ask the organization you wish to
aid, their advice. Some organizations may be able to tell you what
works best for them. Perhaps they will say, "hey can you stuff
envelopes for an afternoon" or "can you make calls" as an
alternative to financial donations.
Another aspect to remember is to always take a few (or request via
email/mail) business cards of the organization(s) you support. These
are invaluable calling cards when you meet people at the doctor's
office, in the grocery store or at work.
Although you may feel alone, feel not heard, or perhaps not empowered
(and that may not be the case) do note that there are organizations
which are steadfast and strong, and they are not going anywhere until
they make the medical, political, educational and quality of life
changes that you or your loved ones deserve.
In the next article, I will give you tips and information about
fundraising, media contact, writing press releases that get attention
and you'll hear some "speaking out" stories from people who have
been touched by Lyme disease.... and are literally sick of keeping
quiet.
Michele M. Paiva is a journalist, author and national legal advocate.
She can be reached at MicheleMPaiva@xxxxxxx or 484 237 8037
This article is #3 of a series of 6, and are free for disperse and use.
It is appreciated if you let me know if you publish or send this or any
articles to any media outlet.
.
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