You Haven’t Heard

You Haven’t Heard?

You haven’t heard from me in a while. I’m sorry but so much has changed that I haven’t had a chance to let everyone know what’s happening in our lives.

It’s been about a year since Barbara and I suspected that there may be something seriously wrong with our son. The first signs looked like a very troubled young man trying to cope with growing up. Young people have challenges today that we never faced as kids. We knew that we had a good kid but he didn’t seem to be acting that way. We told ourselves that it’s just adolescence.

Life got more confusing and fewer things made sense. We first suspected mental illness but that wasn’t the case. Finally, I said to one of our son’s doctor’s that something about the way he slept bothered me.

One night while reading about sleep disorders I stumbled on a very strange disease you haven’t heard of, called Kleine Levin Syndrome (KLS). It was so strange that I could barely believe such a disease could be real, yet we had seen almost every symptom. It explained why our son had been turning the thermostat very cold and opening windows on the coldest days of winter. It explained why he said that he didn’t remember things and it explained why we couldn’t wake him in the morning.

We took our son to the hospital about a year ago in February 2017. The emergency room staff witnessed his violent sleep behavior and saw the boy we knew when he woke up. That first hospital visit began the journey that still continues.

I didn’t mean to ignore anyone. I have been very busy every day, fighting this cruel disease which steals the youth from it’s victims. By the time many KLS patients reach adulthood, they have been asleep for years more than their peers.

No one knows the direct cause of KLS. Medical research currently believes the body develops an autoimmune reaction to a virus. That autoimmune reaction attacks parts of the patient’s brain, which causes them to sleep too long (hypersomnia) and to show many unusual behaviors. KLS is episodic, which means that the long sleep (our son sleeps up to 19 hours at a time) and strange behavior goes away, then it comes back again.

No known treatment exists for KLS. A handful of drugs show promise at this point, but they work for less than half of the people with the disease. We count ourselves lucky that those drugs seem to work for our son.

The story is far from over. The struggle with doctors, insurance, the school system continues. However, we see continued progress.

Some of you haven’t heard from me, though you should have. I’m sorry about that. I have been largely absent from my own business. Barbara has taken a position with one of our clients, mostly to cover medical costs and insurance. I am trying to attend to business and to our son. I think things will get better, but right now I continue to work at prioritizing every crisis of every moment of the day.

I should probably apologize to each person who feels ignored because they haven’t heard from me. I thought this might cover some of that need, under the circumstances.

I continue trying to improve. I’m sorry that I can’t do more right now, but please understand that I just can’t do more. I am getting a little more time back in the office as our son continues to get through the worst parts of KLS. He has returned to school after a year without grades. Hopefully, you will hear more from me in the near future.

If you want to learn more about KLS or if you would like to support research into this very rare sleep condition, you can look at these websites.

The KLS Foundation

KleineLevinSyndrome.co.uk

If you have read this far, thank you so very much. This is why you haven’t heard from me.

Email Checklist Covers You Before You Hit Send

Email Checklist

If you market with email, then you need an email checklist. Checklists make excellence better. When you quantify the tasks at hand, then attending to them becomes less of a task. Tools like CiviCRM take care of the mechanical tasks, like storing addresses and managing lists but covering all your bases about the writing and appearance of an email campaign still requires a watchful eye.

Nothing replaces due diligence. Software only goes so far. Eventually we need to spend time reading and double checking the words we produce. Even after we edit the copy within a hair’s breath of perfection, we need to check the subject line, delivery time and so much else.

When I saw this list, I had to share it with you. I covers most everything you will want before you click “send.”

Email Campaign Preflight Checklist - Infographic by Campaign Monitor
Source: Email Campaign Preflight Checklist by Campaign Monitor

Privacy Questions On Our Minds

Dad’s Privacy Question

My father (a retired attorney) received a promotion from Norton for a new VPN product. It hinged on the changes proposed for new FCC regulations and consumer fear. Was this offer worthwhile? Off hand, I can’t say. Instead of writing from ignorance, I offered this advice:

Advice for My Dad and for You

This is a complex and nuanced question, which I have been wondering about personally. It breaks down like this:

No ISP has said they are going to start selling browsing histories and most have publicly said they have no plans to sell those histories.

Could the government subponea that information with or without a change in FCC policy? One can only assume that the computing power at the NSA probably combs through most unencrypted and encrypted communication looking for patterns and key phrases related to security at this time. Law enforcement can request IP assignments for geo-location (where in the physical world was this IP assigned when it connected to this illegal activity? i.e. which cable subscriber address).

What is Norton’s privacy policy? Will they keep or turn over user logs to legal authorities or decide to sell them at a later time for commercial or research use? How secure will the second hand owners of the data keep those logs? What legal or contractual requirements does Norton have to keep their privacy policy unaltered or to notify users if a change is made?

How much of the current coverage on this topic is just hype? After all, much of this information is already logged and sold or used by Amazon and Google as content providers. So, in practice how is this different in practice from the current Internet?

Is there another party who can provide an easy to use VPN at a reasonable cost who will dump logs to assure anonymity? To that end, I already located open source VPN software that I could deploy and erase my own logs assuring my own security. I haven’t deployed it yet for testing.

Finally, what can you do today that is the least intrusive privacy solution. In reality, none of this technology is new. It’s just more work than the average user is willing to pursue. So the offer from Norton will generate revenue for Norton based on fear. Without doing a lot of homework, I can’t tell you if it’s as good as running your own VPN or if provides any real protection at all.

In spite of my large social media footprint, there’s a lot that I don’t share. That includes my online activity. I use multiple browsers, including browsers that refuse advertising networks (where most of the data gathering happens). I use anonymous/private browsing for sensitive topics. I have a plug-in for Firefox which lets me assign tabs separate identities (work, personal, scouting, etc…) which means that even when I use the same browser, it doesn’t look like the same user visiting these websites.

I can’t answer your question directly with a simple yes or no. I advise a wait and see position. Look at the fine details of the offer. If they make assurances of privacy, examine the terms and limits.

Grapefruit for the Leon Fruit and Nut Exchange

Leon Fruit and Nut Exchange

The Leon Fruit and Nut Exchange recently began an urban gleaning program in our home city of Tallahassee. This morning we picked over seventy pounds of grapefruit and gave it to the Exchange’s director, Tabitha Frazier. The boxes of fruit at the top of the page really came from our own tree. It felt great to make this effort to help a client and to help feed our own community.

How it Works

Property owners around Tallahassee and the greater Leon County area can register their trees on the Leon Fruit and Nut Exchange website. They can specify if they need their fruit harvested by volunteers or if they will harvest the fruit themselves using the crates provided by the Exchange. Then, the Exchange collects and distributes the fresh fruit to local food distribution sites and after school programs. They hope to expand the program to include shelters and other places that will distribute fresh produce to those who most need it.

Behind the Site

Beyond harvesting our grapefruit tree, we worked with Tabitha to develop a website which empowered her to realize a vision. Running the site on a combination of content management and CiviCRM, makes publishing helpful articles about growing and harvesting from healthy trees easy. The site is connected to relevant social media, too, making it easy to broadcast the latest news from the Exchange.

Harnessing the power of CiviCRM, the Leon Fruit and Nut exchange also collects important information about tree locations, harvest totals, volunteer input and much more. Tracking this information reveals hidden treasures in our community.

Tabitha’s other project, Leon Trees collects information about trees with historic significance, giving the community a sense of place. So now, residents can discover Tallahassee’s history by looking no further than the Leon Trees website, then go into the city to see and touch the trees themselves. Residents can participate, too, using the website to register historic trees or extraordinary specimens. The site also uses a combination of content management and CiviCRM.

The Leon Fruit and Nut Exchange stands to be a model for other urban gleaning programs. We feel fortunate to have played our small part, developing their website. Also, we look forward future developments and sharing our grapefruit.

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Value: 5 Ways to Add it to Your Association Website

Value or Not?

Value draws members into your website and generates revenue. However a perceived lack of value keeps people away. Value adds continuity helps membership continuity and relieves strain on retention and new member recruitment. How many times have you heard someone say “I’m not attending the conference this year, so I’ll just renew next year?” Defeat that kind of serial on and off membership by creating an indispensable resource on your website. The right website policies create incentives for your members to keep their membership active while reducing the strain on your limited resources. Keep reading for my top five value added suggestions.

1 – For Your Eyes Only

It seems obvious but restricting your website content to members creates the most direct incentive to keep memberships active. Also known as a paywall, requiring paid membership to view your latest updates or a document repository creates strong incentives to avoid lapsing membership status. We built a website for one legal association that had two separate legal document libraries. The website allowed users to index uploaded content for better search results. The association staff told us that their work load evaporated almost overnight. That change allowed the staff to focus more strategic issues instead of researching and sending documents.

2 – Pick Me!

Even websites targeted to members attract viewers searching for referrals. For example, professional associations often rank high on searches for the profession they serve. That results in visitors looking for a professional. Whether you serve plumbers or attorneys, a “find a professional in your area” link on your landing page can refer new business to your members. It’s a great way to send business to members. Just appearing on a list (or a map show distances to members) makes a strong impression. Members who “don’t need exposure” still pay to appear on the right list, especially if a colleague or competitor maintains a listing.

3 – Show and Tell

People love pictures. Nice stock pictures look great, but photos of members or their work draw eyeballs. Artists compare portfolios. Writers share poems and stories. Members who attend meetings (and those who don’t) look at pictures of attendees. Who’s standing with that award? Everyone wants to know and your members will share, especially if it’s a picture of them. Don’t limit yourself to photos of members and their work. Use your smartphone to make a quick video demonstrating new techniques or shared problems. Your trademarks and logos should also be available to members. It serves no purpose to hide those important images away from the public, especially when those images can draw eyes and traffic back to your own website.

4 – News

Publish your newsletter content to your website. Busy people move faster than bulk rate mail. When the printed newsletter or magazine arrives, they recognize the content faster. That means that important points get reinforced in two media. It also provides an opportunity for members to share content with their peers. This simple gesture solidifies the importance of your website in their minds.

5 – Be the Hub

Sometimes we want service. Sometimes we want other things. Online registration, membership directories, and meeting calendars make part of the list. What tasks can you automate? What tasks are you sending to outside providers which you would rather have at your fingertips? Don’t spend staff resources performing tasks that your members can do better for themselves. If your members come to your website for information (often in less time than calling or emailing your office), they feel empowered and happy about their membership. Happy members use the websites they find indispensable.

If you find yourself asking, “why do we have a website?” Try some of these ideas to make the website more valuable. It feels great when your readers and members value your website. Don’t wait any longer make your website better today. If you need a hand, contact us today.

 

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