A Real-World Example of an SMA Family
Martha Slay, FightSMA Founder and President
The Early Days
First, it's important to know that in the early days, we were not known as "Fight SMA." We were (and still are, in many quarters) "Andrew's Buddies." And before there was an "Andrew's Buddies," we raised spinal muscular atrophy research dollars for another organization. (You may decide to do that, too. There's wisdom in it.)
Our history began, as yours may have as well, in the pediatrician's office where we took our then 14-month-old son, Andrew, because he was not yet walking. He had had a picture-perfect first year, with no indications whatsoever of any problems. But we, and the pediatrician, wanted to make sure that at 14 months (and not yet walking) all was in order. The doctor thought an ankle felt weak, and he recommended a specialist take a look. That specialist showed a higher level of concern and began throwing out names of terrifying diseases for us to eliminate as reasons. He sent us to yet another specialist, a brilliant and kind man, who did more tests, then pulled out a yellow legal pad and slowly, line by line, bulleted out his logic for why he thought Andrew had a disease we had never heard of called "spinal muscular atrophy" or SMA. He said it was "not a nice disease." Crippling. Wheelchairs. Often fatal in a child's early life. "I can give you no hope, he said. "Now you have to get on with parenting."
So, there we were.
Our greatest source of happiness was threatened, practically handed a death sentence. There was nothing that could be done. There was virtually nothing going on with SMA research. It was genetic, but no one knew what the gene was. That was unknown.
All of the happy colors drained out of the world. It assumed shades of grey.
Martha remembers that even though it was May - and spring is glorious in Richmond - everything smelled awful. And she thought she would never enjoy this elegant, delicate month again.
But, she did want to fight back, saying to the neuromuscular specialist that we simply would not accept this. We went to a second specialist, this one at Johns Hopkins in Baltimore, where we found encouragement in the fact that this individual did not immediately confirm the initial diagnosis. But after some time, he did as well.
What we did not do at that point was to start up an organization and start fundraising. We were too broken up. There didn't seem much point to it. We just became very, very sad, and didn't talk much to people about it. Andrew looked "normal," and while he was still only a one year old or a two year old, he could be carried about and not attract any particular attention. Plus, he was a beautiful kid and a lot of fun, and he was starting to talk and be very, very interesting, asking neat, cool questions. Just like your kids.
Still, no fundraising, no organization, no publicity. Just two very sad parents and grandparents and uncles, aunts, and cousins, all trying to make the best of it.
One of the things that pulled us through and perhaps kept us from sinking into depression or blaming ourselves or each other was to allow our faith community - in our case a Christian church that was an interesting hybrid of traditional Presbyterian and the more "out there" form of contemporary, free-form worship. Our friends in our hometown of Richmond, Virginia, would hear of some preacher, or speaker, who had an encouraging message. They'd scrape Martha and me off the floor, throw us in the back of their station wagon (no SUVs then) and drive us away to some healing service, in Maryland or North Carolina or wherever.
A little bit of hope crept up out of our souls. We'd find ourselves praying and singing and jumping about (in an inevitably and conservatively "Richmond" kind of way). And who knows what was being accomplished in the spiritual realm. Maybe vast cosmic battles were being waged between angels and demons over the life of this boy. Maybe not. But I decided that I sure didn't know a damned thing about how the universe worked, or how God worked. I just knew that we were in a lot of pain, and we'd try things we didn't understand.
I remember driving down to Charlotte, North Carolina, to a massive coliseum that was overflowing with people who were there to see one of those TV evangelists that I'd always held in such disdain, not trusting their motives or their money. But...
I found myself fighting my way through thousands of people for at least an hour, carrying 6-year-old Andrew, arms aching, all the way up to the stage, where we had not been invited, where the evangelist was yelling, people were falling down all around us, cameras were whirring, security guards were trying to manage the madness. All pretty chaotic and wild. But I wanted to get as close in as possible and give it a shot.
Did it help? Did it work?
I don't know.
But diving in to that stuff at least allowed me to say to myself: "We've not cut ourselves off from anything that might - just might - help. It also helped us see things from a different perspective than just "the weakness," as Martha came to call it. We tried to build up a level of faith about it all that - while often pretty puny, at least on my end - helped. Andrew was getting older, growing up, and we were getting through.
You lose a lot of your arrogance and cynicism when someone you love needs something bigger than what you can supply.
So, what was our earliest strategy?
Be a little crazy. Try things that look even crazier. And try to believe that things will work out.
Oh, and try to answer some of those "neat, cool" questions that Andrew was asking that were getting tougher by the week, like:
"Do all dogs walk?"
"Are my legs just for decoration?"
Mostly, it was break down crying while pushing the lawn mower. Stuff like that.
Goodbye to the Low Profile
That's actually the title of a classic book on public relations written by PR guru Herb Schmertz, whose work I've admired for some years. I don't think he'd mind my swiping his words, because by the time Andrew was four, we started talking about a wheelchair. And there's no such thing as a four-year-old in a wheelchair...with a low profile.
We began getting used to the idea of becoming "public property," and since we were already in the public eye with the little motorized wheelchair pre-schooler Andrew was beginning to bop around in, why not try to do something to advance whatever work was under way.
For at least two years after Andrew's diagnosis, we were still so emotionally immobilized that any kind of fundraising or involvement was very far from our minds. His physical weakness and continuing decline was frightening. There were SMA-related complications to deal with. (Colds became very serious, very quickly. There were very tense trips to the pediatric intensive care unit.)
I had gotten into the habit, every several months or so, of calling the Muscular Dystrophy Association to see if anything at all was new in spinal muscular atrophy research. There wasn't much.
I am sorry to say I don't remember the woman's name at MDA, but hers was a kind, friendly and intelligent voice, and she was the person who asked me, "Have you heard about the progress in SMA research at Columbia University?" She put me in touch with an MDA-funded geneticist there named Conrad Gilliam, who in 1990 had pinned down the general location of what was being called "the SMA gene" to a specific region of Chromosome Five. That was, she explained, a major breakthrough and encouraged a lot of interest in several labs that wanted to discover the actual gene.
Dr. Gilliam, a very focused, but friendly, young researcher began to tell us more about the state of SMA research. There was, he said, a long, long way to go. This particular gene hunt was very complicated. We began paying more attention to his work and to SMA research generally and sent a check from our family for $1,000 to MDA earmarked for Dr. Gilliam's work.
In fact, we sent a bunch of checks. In early 1991, we raised between $20,000 and $25,000 for MDA, earmarked for Dr. Gilliam's work. We did this by writing letters to friends and - surprisingly - to strangers.
For the task, I bought a second-hand Macintosh computer in 1990 (my first) for $500.
Many of the letters back in 1990 were sent to people we knew - some we hadn't seen in years. In one case, we wrote to a very fine lady whom we had known twenty years before but had rarely seen since. Many such letters produced nothing. The letter asking her "for anything she could do" produced a check for $5,000. So, don't be shy about making advances to people such as these. People with money want to give some part of it to something worthwhile. Generally, they give to institutions and organizations they've already heard of. They need to hear from you. Tell them.
Most of these letters asking for help generated gifts in the $25 to $100 range. One letter we sent to corporations was particularly fruitful. This was a simple one-page letter. We attached a photo of Andrew to it with a paper clip, It began: "My four-year-old son Andrew has a shot at beating a neuromuscular disease that is trying to kill him:" We mailed the letter - cold - to about 500 corporate CEOs around the country, asking each for a gift of $1,000 to $5,000. Most, 493 of them, gave us nothing. But, seven gave us $1,000 each. Several Richmond-area corporations gave us gifts of $500 or $1,000 after being contacted, either by person or by letter, or by an acquaintance who was willing to help.
We also produced (for free, with donated help) a simple brochure during 1990 (before we incorporated), which was mailed to a list of people in the Richmond area. The brochure had a close-up, black-and-white photo of Andrew, then five, with blue ink for headlines. On the outside front cover was a closeup picture of his face and the line: "Andrew Slay is the fastest driver in his class." On the inside was a photo of him speeding across the playground in his motorized wheelchair, with the line: "But he'd rather walk."
The brochure gave us the beginning of a professional look. It did not look flashy or expensive, but it looked good. We thanked (and listed) all the vendors that contributed toward it on the back-page.
We sent the brochure to several thousand people in the Richmond area. The response was terrible. Many names and addresses on the rented list were out of date. And, after several tedious sorting sessions as directed by the post office, we sent the brochure by third-class. This inevitably tells the recipient "Do not open. This is junk mail." There were several things wrong with this mailing.
In March 1991, the first local newspaper story about our effort appeared the old Richmond News-Leader (an afternoon paper that has since merged into its sister morning paper, the Richmond Times-Dispatch.) It was a terrific story, with a great picture of the family (which now included Patrick, a robust two-year-old who was unaffected by SMA.) The story was picked up by the Associated Press and circulated around the state. The article, in turn, generated a number of contributions. We very quickly had the article reprinted in good-quality color and included in our letters and visits to potential contributors.
Still raising money at that point for MDA,we were told by our church's leadership that they wanted to earmark an offering for our effort. The church donated the collection at one Wednesday n;ght dinner, where we spoke. The collection was an unusually large one: $1,377.31. Recalling those early months, I am reminded that my company helped me by giving me two weeks of time off with pay to work on the fundraising effort. That enabled me to write an extensive research backgrounder on SMA, make more phone calls, and crank out more letters.
The point in all of this:
Even without organizing as a nonprofit corporation with all the fixins,' you can do a lot. And there are existing organizations, such as MDA, in virtually any cause-related arena you find yourself where you can send money that you raise. It all depends on what you want to do and how you want to do it.
But remember that, from scratch, with no organization, almost no volunteers, and no special event of any kind, we generated nearly $25,000 over a six-month period. That may be all you do. It's something.
Meanwhile, we kept asking Conrad (the Columbia researcher) if there were any specific things we could do to make the work go faster. At that time, he was sharing a piece of gene- hunting equipment called a DNA Sequencer with others labs at Columbia. He said that if such a machine were to be dedicated full-time to his lab, it could speed up the work twenty-fold.
That sounded cool. It was specific. A hard target. We could envision a campaign to raise the money needed for a shiny new "gene machine."
So could others.
So, in November 1991, we got ourselves organized. We chose a name for ourselves. We became incorporated. We set a target of $100,000 in 30 days. And we got to work.
Why We Became an Organization
This is worth some attention, because there were several routes we could have taken. You will have choices, too. We liked MDA. That organization had been encouraging to our effort. I had attended one of their annual meetings in Tucson, Arizona. I liked their leadership. I respected the organization and its work on many fronts...the MDA clinics across the country, the summer camps, the Telethon, the research. But, Martha and I felt that we wanted our work for SMA to be branded as "SMA." MDA taught one disease name very well: muscular dystrophy. But the other 30-plus disease efforts supported by MDA did not seem to have enough visibility, in our opinion. We liked the ability to talk to researchers directly and personally and learn specifically what they needed - in addition to what they received from MDA and others - in order to "move the needle." That sense of direct involvement and impact was important to us.
An organization like MDA contributed to hundreds of worthwhile projects that advance research in some 40 neuromuscular disease areas. If organized separately, we could monitor the relative handful of labs doing SMA research and apply funds where they might already make the most immediate incremental difference, on top of any commitment already made by MDA.
We also had a conversation back in 1991 with a second, existing organization before forming our own, that was dedicated specifically and solely to SMA. But it felt very far away, and we did not want to lose control over where the research dollars we raised should go. We liked the freedom that having our own organization seemed to offer. It did not feel like the right fit for us.
We also, at that point, liked the appeal (for contributors, for the media) of being headquartered locally. That was very attractive. So, we met with an attorney, who specialized in nonprofit and tax-related issues. He advised us on a pro bono basis about getting set up legally. We did our paperwork and we were off and running.
The Name
It's important. And we thought a lot about it.
We chose the name "Andrew's Buddies," for several reasons.
Just as we thought it was important to make the organization local, we thought it was important to make the name local and personal. At that point, we had no idea of being a national effort or organization. We just wanted to do something. We lived in Richmond, so we made our campaign (with some exception) a Richmond campaign. We wanted to put a face and a name - that of a child - on the campaign. People respond to people, not to organizations. The other groups out there had "organizational" names. We wanted ours to be more human.
We liked the word "buddies" a lot. It felt good. And different. And, it could grow. In fact, over the years, chapters have adopted the name "buddies" preceded by the name of their child, like "Hannah's Buddies" or "Joshua's Buddies." But we're getting ahead of ourselves. The word was friendly and informal and it suggested that there was something that some people were doing that gave them the right to be called "buddies." Hard to say no to a little boy or girl who wants to be your buddy. It felt pretty cool.
It should be noted that it is not necessary to incorporate and become an official tax-exempt organization to raise funds. There are in generally every community existing "umbrella" organizations that will allow you to use their tax-exempt status. Your campaign can enjoy the tax status of that larger existing organization. www.HealthFinder.gov is a good resource for identifying such organizations.) Also, as mentioned earlier, there are undoubtedly organizations with similar (though possibly not identical) missions to yours. (MDA was one such organization in our cosmos.)
Consider working with such an organization on a campaign or project in the early days.
In our case, FightSMA is structured so that families can become legal chapters (under our IRS status), or they can be "Fighters," and raise money without organizing as chapters.
Now, back to our "Discussion on Objective, Strategy, and Tactics."
Raising Money
It is not an easy task.
And there are no magic formulas for success. Mostly, it's being willing to hear "No" from a lot of people on your way to hearing the less frequent, but infinitely rewarding word: "Yes."
It's good to know right from the start that the many "No's" don't matter, only the few "Yes's." And you will get them.
For Martha, the rejections can be hard. Her former career as an opera singer had prepared her for the rejection that all performing artists face. "But this is a very different and a much deeper kind of rejection," she says. "Or you perceive it is."
"When someone doesn't want to help your child, it's very hurtful. You have to become stronger to weather that - the disappointments and rejections," she adds. "That has to happen."
So try to deal with those rejections, and then keep in mind a few basic principles of fundraising. Here are three:
First, people give to people. And they give to people they know. They support an organization because they know a real person who puts a human face on that cause. People rarely give to strangers. Sometimes, but not often. So, concentrate first on whom you know. (When you sit down and do an inventory of people you know, you'll discover quickly that you actually know quite a few folks who are in a position to help you.) Then, move out from there.
Second, people like to know where the money is going. Unless you are working for such good and well-known causes as heart, cancer, AIDS, Alzheimer's, and others, the funds you raise may be going to less familiar destinations. You'll need to educate your donors (and your volunteers) so they'll understand. You'll also need to keep a constant eye on how you actually split the money between what's called "Program" (the real work and mission of your group) and "Administration" or "Overhead" (the necessary "backroom" expenses that allow the organization to function). People want to see an extremely high percentage of revenue going to "Program." And they should.
Third, people like momentum and they like a winner. SMA research, for example, has had both of those things going for it after a century of relative darkness. With the gene discovery in 1995, the refinement of that genetic research in the late 1990s, and the launch of clinical trials of potentially useful drugs, the cause gained momentum.