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Lyme Disease (Part III): You Are Not Alone; Lyme Organizations

Michele Paiva - 7/15/2005

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 by 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.