The ALS Ice Bucket Challenge, etc

I ask people for money for a living.  No, I don’t call people up and ask them to give me their credit card number.  I don’t sell baked goods outside of Target.  I work with a talented team of professional people to create sustainable streams of income for a nonprofit organization that serves poor and homeless people.  We do this through a number of means:  fundraising events, will and estate planning, direct mail program, grant writing, corporate sponsorships, public relations and marketing efforts and most of all building lasting relationships with donors.  

Fundraising is about cost effectiveness and sustainability.  How much does it cost me to get you to give me a dollar and how likely are you to do it again next year?  If it costs me .99 to get that dollar from you and you probably won’t give me another one if I ask you again a few months from now, it’s obviously not a good strategy.
The ALS Ice Bucket Challenge is really interesting from a fundraising perspective.  It’s social media at its best.  It’s been exciting to watch.  Now, it should be noted that this phenomenon developed organically – it didn’t originate with the organization.  In fact, other nonprofits were mentioned in some of the first water-dumping videos.  But someone was filmed with their water bucket, who mentioned ALS. It was televised, and the momentum began.  So, this is more so something that “happened to” The ALS Association than something they created.  They didn’t invent it, but they have had to respond and mobilize to address their new place in the spotlight.  It would be optimal for them to use the money quickly and appropriately (as intended, for RESEARCH to find treatments/a cure) and leverage this media frenzy situation to bolster their income stream for years to come.  
First of all, from an awareness-raising standpoint, hats off to all involved.  Mission more than accomplished.  Secondly, it didn’t cost the nonprofit any money.  That is amazing!  But as far as the money raising part and looking to the future, there are a few issues:
– they received a whole bunch of money, which is wonderful…but…they definitely weren’t prepared to explain what they plan to do with the funds.  The organization’s answer to that question is basically that they are going to keep doing what they’ve been doing (which appears to be slow, methodical research with very high administrative costs.)  This does not make their core donor base of families affected by this disease happy.  They want action – find a cure!  Now!  Cut through the red tape and release those funds ASAP to promising researchers! I’m sure there are laws and processes and procedures.  Public health organizations don’t do their own research – they fund research.  You don’t just throw money at the first person you see wearing a lab coat.  BUT – this is where good leadership comes into play.  GET IT DONE.  FIND A WAY.  MAKE HISTORY!  
Presumably, their fundraising message has, prior to this, been “give us money so we can cure this disease.”  Lesser known disease causes get by on the message that if only there was more funding, a cure would be on the horizon.  In fairness, this windfall probably wasn’t expected, but we should, in this business, ALL be prepared for our prayers to be answered with a huge influx of cash, and have a plan.  Stewardship is our business.  This nonprofit is going to be under the microscope now.  One false move of financial shenanigans will sink them.  People are already noticing how much the higher up staff are paid (a lot) and the proportion of funds spent on travel.  Now, as a fundraiser, I will say this: it’s not wrong to pay organization leaders well, and it’s not wrong for them to travel a lot – there are justifications for those expenditures.  But where are they traveling and are they accomplishing the organization’s goals?  Awareness raising must happen before significant funds are raised.  Perhaps that has been their current, main goal until now.  If so, they better be making major changes to their strategic plan.  A bunch of people on Facebook just did that for them.  Awareness is raised.  Money is there.  They should be moving quickly and if they can’t, people who CAN, should be brought in.  Now.
-this year, it’s the Ice Bucket Challenge.  What’s the plan for next year?  How many of you who gave this year will give again next year?  Unless you have a truly personal connection to the disease, I’m guessing not many.  What this organization needs to do is figure out 1. How to make these one time donors regular donors.  Without a personal connection, it’s not easy.  And 2. What’s up for next year?  This will be the real test.  Every charity on the planet is scrambling to come up with the next cool, interactive fundraising idea.  It will be like lightning striking twice if they can pull it off again.  
My guess is, unless they can come up with the next awesome idea, they will grow only slightly (in terms of growth outside of this current frenzy) as a result of this.  But as far as another year of tens of millions of free money from millions of new donors?  Nope.  So they have millions of dollars this year that they probably won’t get again next year.  That’s tough from a budgeting perspective.  
There is a communication/branding issue also.  Outside of their control, but must be managed. is the website many people (self included) cited during their videos. Apparently that is a regional/local chapter of an ALS organization in the New Jersey area. The national ALS Association website is  That could be sparking a major internal controversy.  Good for them for containing it so far.  If this was my cause, my favorite charity, I’d investigate that further.
Those are my thoughts from an organizational perspective. As far as being a donor goes, I think it’s great to donate to any cause you feel compelled to donate to. Throw 10 or 20 or 100 dollars toward any charity that has a good reputation, especially if it helps someone you love feel supported.  Those one time donations can push us that last bit to meet our goal.  But it’s not what sustains us.  Have $200 set aside each year to support your friend’s marathon race, buy some raffle tickets for the local fire department, or to put toward the next ice bucket challenge.  But it really is worth considering to choose two or three charities that are closest to your heart, look at your budget and really give as generously as you can.  If you commit to a small number of charities, the impact that you have will be greater than spreading the money around in small amounts.  I encourage you to consider what causes you really care about.  What organizations do you trust to carry out their mission in support of the cause you care about?  Don’t just give your money there, but spend your time. Get involved, go to the gala, form a walk team, and bring your friends. Volunteer on Wednesday nights.  Connect with the people who are being helped.  Learn about the cause.  Become an expert.  Become an advocate.  This is how a difference it made.

Next stop: Duke University

My next step on the journey to fully defeat cancer starts on September 8th.  I will be traveling to Duke University in the Raleigh-Durham area of North Carolina to participate in a clinical trial for a vaccine that is intended to bolster my immune system in order to prevent the recurrence of colon cancer.



That’s what it looks like at the cellular level, apparently.  A preschool art project.  
Yes, as far as we know, right now I’m cancer free. But there is a high likelihood that my cancer will come back. And while it’s entirely possible that it won’t, I am not comfortable just sitting around and waiting for that to happen.  So, I’ve decided to be a guinea pig.
It was not an easy decision. Of course all kinds of weird books and movies go through my mind. I’m getting injected with a virus! I could actually start the zombie apocalypse, People!  
But after a lot of thought, research, prayer and conversations with people I respect, I’ve decided to go for it. I am not excited about getting on an airplane four times in the next few weeks. I hate flying,  I hate traveling unless it’s for fun.  I’m sick of my life being disrupted. I’m not a fan of getting poked and prodded. I don’t really want more doctors in my life. Doctors are mean sometimes! I’m a little bit scared that something weird might happen to me.  I don’t want the inconvenience for myself or my very accommodating family.  I don’t want the side effects.  (Nothing too crazy, just nausea, fever, fatigue, etc.)  I don’t want to keep feeling like I’m under a microscope. I don’t want to have to think about cancer all the time. I don’t want to schedule my life and other people’s lives around another cancer thing.  We’ve been through so many tests and procedures.  Surgery.  Chemo. Side effects. I just want NORMAL for a while.  
But I want to live. And this is something I can do to increase my chances.
There’s so much I want to do, so much to live for, so much to see, so much to learn.  I’m busy!  I have plans!  I still haven’t met Bono!  Cancer, like those horrible terrorists in Iraq, has this tendency to go away for a while and then sneak up on you. I’m not letting that happen, to the extent it’s possible.  This vaccine might be the Seal Team Six to add to my already active forces.  
Besides, we might be making history. I might be a part of groundbreaking research. We might be curing cancer.  This is a way I can help.  
So, after reviewing my oncology records, they approved me to do the on site final screening.  I will go down for the initial visit (sadly, spending my 8th anniversary away from my husband) and hopefully get my first injection the next day. I will be traveling there every three weeks, three more times, to complete the cycle.
The officiant of our wedding, John, who is in ministry in the area, along with his wife, has agreed to house and shuttle me around for the first visit.  What a blessing!  It reminds me of the realness of the body of Christ. This is a man who I knew only through friends and a few good phone conversations back when I lived in Seattle.  In 2006, he agreed to do our premarital counseling, and travel from North Carolina to Pittsburgh to marry Kevin and me.  We have only seen him twice since then. And now eight years later, he was quick to offer help with all of this.  Two close friends of mine (one who is in the middle of moving!) were so quick to offer rides to the airport and any help that I would need. My husband is a little nervous about this whole deal, but he kindly booked my flights for me because I’m notorious for screwing that process up.
I said recently that we need fewer activist Christians walking around judging people’s behavior, and more silent servants of Jesus. This is what I’m talking about. Service.  Once again, cancer, enemy that it is, shows me love and care and glory.  Once again, I’m humbled.  
Pray for me and this strange chapter of the battle.  


So the actor, Robin Williams, age 63, died this week, apparently from hanging himself with a belt in his home after his wife went to bed.  His assistant found him in the morning.  This news made me feel truly sad.  Most celebrity deaths do not invoke a sense of personal loss for me.  However, this guy was special.


Mork appears in some of my earliest memories and Patch Adams made me want to be a doctor and the movie Dead Poet Society made me want to be a teacher.  There seemed to be real kindness behind the smile.  There seemed to be a good natured generosity inside.  What do I know about his character?  Maybe he was rude or impatient.  Regardless, what’s clear is that this was a gifted man who lived an interesting life, could afford all he wanted, experienced success at many levels and made a significant impact on the world.

And, yet, one evening a few days ago, apparently, he couldn’t stand to live another moment.

The idea of wanting to die is so foreign to me.  I fought for my life for the past year.  I have to do a little grace-work to not be offended at the idea of someone throwing away something I worked and prayed hard to keep and am thankful beyond words for.  I’m scared I might have to die early because of stupid cancer.  My knuckles are white from my desperate clinging to the caboose of the train of life and here we have people casually hopping off the luxury car!
I simply can’t imagine.  Even at my unhappiest (you know, like age 15) I was always too curious and hopeful about what’s around the corner to ever consider ending it.  ***I certainly do not say this to brag – on the contrary.*** I feel quite fortunate to not have traveled to these emotional depths.  I tend to fluctuate between intensely joyful, deeply thankful, moderately angry and a bit bored but pretty much never do I find myself in the realm of despair.  The closest I’ve felt to that is feeling scared and sad at the idea of dying.
I don’t know why some of us enjoy the benefit of nicely balanced brain function and chemistry and some of us have depression triggered by any number of issues commonly referred to as a chemical imbalance but specifically: genetic vulnerabilities, a faulty mood regulation issue in the central nervous system, high stress environment or ineffective stress management, medical problems or medication side effects.  Put another way, mysteriously, some of us float around in the easier emotions and others of us are plagued by chronic melancholy.
I don’t know a lot.  I’m not a doctor or therapist.  However I know some things about this shitty little demon because some of my favorite people struggle with it mightily.  Depression is bad.  Dark.  Painful.  Even evil, maybe.  While I believe there are medical causes and solutions related to depression, I also sense that there is a spiritual side to it.  It distorts one’s good mind and mushes into patterns of unhealthy, unhelpful thinking. Depression strangles joy.  It snuffs out hope.  It creates an alternate reality of lies.  It makes the world seem absent of good things.  It makes the worst case scenario seem most likely.  It can make the simplest task seem like climbing Everest.  By yourself.  At night.  With a broken foot.  In a bikini.
I don’t know what this really feels like.  But I know what it looks like.  And it breaks my heart.
It also breaks my heart to hear what people say about depression.  Just get over it.  Buck up.  Look on the bright side.  Trust God (good advice, surely, but insensitive and simplistic and generally ill timed.)  Do some yoga.  Memorize this verse.  Not that some of those things aren’t potentially useful.  But just shut up.  If there was a magic bullet, it would be for sale at Target, clearly marked.  Ok?
This thing causes people to End Their Lives.  Like, kind of a lot of people.  And it sends others down the path of substance abuse, and that’s not a pretty picture either.  It’s not a simple problem.
So what can we do?  I don’t know, actually.  I mean, I can’t fix it or tell anyone how to.  There’s medicine and good counselors.  Those help some people some of the time.  There is exercise and stress management.  There is good for you food and enough sleep.  There is love and support.  I know that Jesus is big enough to handle it, but I don’t know how to say that to a hurting person without sounding annoying.  So I pray.  And I ask other people to pray.  And I don’t try to fix them. And I am thankful for the health that I have.


I recently had a conversation with a produce dept staffer at Giant Eagle.  I was expressing appreciation for the recently added organic options and they were basically rolling their eyes.

It made me mad.

Look, this isn’t a fad.  The fad has been the mindless consumption of processed crap for about 100 years.  Hydrogenated oils.  Preservatives.  Artificial sweeteners.  Corn syrup.  Even with all of our information about the importance health, more of us are getting sick.  Obesity, cancer rates and heart disease are at record highs. Do we really need convincing that something is wrong?

It’s great that more people are growing in awareness regarding the chemicals and lack of nutrients in processed foods.  You don’t have to ditch all of your favorite treats and become, like, a vegan, right this instant.  Just be open to learning some about what you’re eating and feeding your kids.

Seriously – think about what we feed our kids.  Sugar, salt, fat, chemicals, fake food shaped like dinosaurs.  I become increasingly more alarmed and less tolerant of this stuff.  And people roll their eyes at me.  But the difference is this: I’m carefully reading about these things, and the eye rollers just don’t want to worry about scary food issues.  People want to eat their Cheetos and drink their soda in peace.


Listen, I’m not trying to ruin your fun.  I adore certain foods that are made from junk.  It’s a struggle to say no to them.  I love giving my daughter food she loves – it’s fun to make kids happy.  And believe me, candy makes this kid happy.  But so do pears fresh from the tree in our yard, organic yogurt and cookies home made from real ingredients.

Having colon cancer is a major wake up call.  While it is very likely genetics played a role in my developing cancer, I must examine my diet over my lifetime.  I truly thought I ate healthy before.  Low on meat, high on fresh vegetables.  But in efforts to reduce calories in the never ending quest to be thinner, I relied heavily on artificial sweeteners and diet and lower fat products.  I feel deep regret, recalling a routine I once had where nearly each night I would work out for an hour of cardio, then relax and drink about 8 glasses of iced tea, each sweetened with a packet of Equal.  8 servings of Aspartame a night. When I was pregnant and had to avoid sugar due to gestational diabetes, I ate 4-6 sugar free popcicles a night during that warm summer. I was doing my best.  But I was misguided.

There is good news, though.  More people are caring.  More are reading labels and avoiding those unpronounceable ingredients.  More are learning about how the food industry has duped us and the FDA has failed us for a century.

As more people care, the market is going to shift toward greater transparency in the food industry.  And then, healthier, better options.  The first step is these companies feeling the economic impact of people saying “no” to this junk.  Interestingly, McDonalds had their worst July profit-wise in ten years.  Changes are coming…

Good resources:



Let's talk colonoscopies

One thing I hope comes out of the ordeal I have been through over the past year, is that not one single person I know will procrastinate when it comes to getting their colonoscopy.

Many people are uncomfortable talking about this part of our bodies. I understand. Over the past year I have become more and more comfortable talking about these kinds of things. And I refuse to be quiet about it just because people might feel weird talking about rear ends. Honestly, if more people had talked to me about this kind of thing, I may not have felt compelled to ignore what was obviously becoming an increasingly serious medical situation.  I was scared. And most importantly, I did not understand that the earlier I addressed it, the better my outcomes would be!!!  So, I am writing this in the hopes that someone who is having any kind of medical issue that concerns them, might take that courageous step to get it checked out.  Most of the time, you go to the doctor and find out everything was fine. That brings peace of mind. On the off chance that something is wrong, it really is always better to catch it early. I promise.  As a 36 year old mom diagnosed with advanced stage colon cancer, I can tell you…if I could go back and catch it early, boy, would I.  
The purpose of this blog post is to explain what happens during a colonoscopy, the reason it is important to get one and who should get one.  Let’s begin with the latter.
If you are approaching the age of 50, you should schedule your colonoscopy.  Do not procrastinate about this. It’s important. Do it.
If you have anyone in your family who has had colon cancer, or a number of polyps discovered during a colonoscopy, you should schedule your colonoscopy at the age of 40.  
No matter what your age is, if you have had any bleeding when you are going to the bathroom, you need to talk to your doctor. They may tell you you have hemorrhoids. They may even confirm that you have hemorrhoids. However, you should ask your doctor how they can be sure that that is the only issue going on.  Most people have hemorrhoids to some degree. Unfortunately, as in my case, this can cover up a major problem.  If my doctor had been more diligent in 2003, I may have avoided cancer or at least had a much less serious case to manage.
If you have hemorrhoids, see a specialist and get them taken care of. It is not very pleasant. However you can handle it.  The process is done in a doctor’s office, and takes about five minutes. It’s a little uncomfortable, because what is happening is they are basically putting tiny rubber bands around the hemorrhoid. After a week or so it dies and falls off and should not cause you any further problems.  Once the hemorrhoids have been taking care of, the doctor should absolutely perform a lower scope procedure to see if additional screenings are needed.  If the doctor sees something he or she does not like, they will schedule you for a colonoscopy.
A colonoscopy sounds scary. Let’s be honest. They are putting a camera up your rear end.  I mean, that sounds terrifying, and very upsetting.  But before you freak out, let me walk you through the whole process.
If the doctor wants to look at your colon, it stands to reason that they don’t want it to be occupied by the digested food you have eaten. Know what I’m saying?  Put another way, your doctor doesn’t want your poop to be in the way while he’s looking around in there.  So you must do the famed colonoscopy prep.  Depending on the doctor, they do this a few different ways.  One thing that is common, however, is that you cannot eat anything for about 36 hours before your colonoscopy is performed.   For some people this is the most difficult part. Not eating for a day and a half kind of sucks. You are allowed to drink clear liquids. This includes things like chicken or vegetable broth, Jell-O, water, popcicles, apple juice, soda water, Sprite, Gatorade, coconut water without the pulp, etc.  many doctors ask you to avoid the colors red and purple in things like Popsicles or Gatorade, just because they can resemble blood in the digestive tract.  
Next, the food that you ate the previous day needs to come out. This is when the  laxative comes in. Different doctors have different types of laxative that they want you to use. My doctor’s instructions are to take four Dulcolax tablets, and then two hours later, begin drinking a solution 8oz every 15 mins that is made from a laxative powder and Gatorade.  This totals 18 doses of laxative over about 4 hours!  The next couple of hours are rather inconvenient. You do not want to stray too far from the bathroom. Everyone is different, but it is recommended by some web sites/literature that you go so far as to not wear pants, in order to have as few barriers as possible between you and the toilet.  Better safe than sorry.  
I don’t suppose it’s necessary to go into a lot of detail about this part, but let’s just say that you are going to go to the bathroom many many times over the next couple of hours. As time goes on, what comes out transitions from solid to liquid to clear.  Using flushable baby wipes as opposed to regular toilet paper is highly recommended.
As you approach the evening of this day you will be hungry, sick of drinking (although it’s very important to remain hydrated!) and tired of going to the bathroom, however the hard part is done. Still no eating until the procedure is over, and no drinking at all after midnight!  You’ll probably fall asleep and wake up dreaming of pancakes and everything else you can’t eat.  
Outpatient check in
You need to have someone take you to have this procedure done. You cannot drive afterwards. When you arrive at the surgery center, or wherever you are having the colonoscopy done, you will meet briefly with a staff person to get checked in. You will then move to a prep and recovery room, where you will undress, put on a hospital gown, climb into a hospital bed, and meet with the anesthesiologist.  A nurse will insert an IV. If you are extremely anxious, you can ask for an anti-anxiety medication to be administered through the IV while you wait.  
When it’s your turn, you will be wheeled into the room where this procedure takes place – a cross between a doctor’s office and an operating room.  At this point, you’ll be given anesthesia and very quickly conk out.  I do not remember anything from this point until about a half hour later, when I wake up in the recovery room.  There is no pain, no discomfort.  No memory of the procedure.  As far as I know I was asleep peacefully for both of my colonoscopies.  
At this point, your family member can come back, you get dressed, speak with your doc who will tell you if they found anything of concern or removed any polyps that will then be biopsied.  Once you are done talking with the doctor you are free to go have a giant stack of pancakes.  
Finally, the importance of getting your colonoscopy:  if you have polyps, they start out small.  Non-cancerous.  But they can grow and become cancer.  If you catch it early and remove it, it won’t become cancer.  If you let it grow, unhindered, it may slowly become cancerous.  The more progress the cancer makes, the more likely it is to KILL YOU.  
I wish I had read ^^ that paragraph ^^ ten years ago.  Please, don’t make excuses.  If you have something weird going on, just get it checked out.  You’ll either be relieved, or have a better chance of fighting whatever is wrong.  Every day you let go by makes the battle you might find yourself fighting a little harder.  
If you know someone hemming and hawing about a medical issue, send them this blog post.  Maybe it will give them that push they need.