Going all in on my plan to ease fundraising fatigue
Rett syndrome groups are sending their spring appeals. Powerball, anyone?
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Spring fundraising appeals for Rett syndrome causes have been turning up in the inbox and the Facebook feed, as they do every year at this time. Girl Power 2 Cure, a worthy organization, says there’s still time for us to “give a dollar a day in May.” The Rett Syndrome Research Trust, another worthy organization, wants us to start a crowdfunding campaign. People are walking for Rett, running for Rett, golfing for Rett.
We read these appeals with interest, since our daughter Abby, who is 29, has Rett syndrome. And we throw nickels and dimes in the direction of one organization or another when we can. But increasingly, these pleas for money cause me to wonder what happened to the fundraising zeal we once had, and to ponder how things have changed in the more than a quarter-century since we got the diagnosis of Rett syndrome. Also, they have led me to come up with a new fundraising strategy that I believe will satiate all the begging organizations.
When Abby was young, my wife, Donna, and I dabbled in fundraising occasionally. Back in 2013, for instance, I ran the Disney Princess Half Marathon in Florida under a Rett banner, raising a few hundred bucks from family and friends for Girl Power 2 Cure, which supports Rett syndrome education and research.
The high-water mark of our fundraising was a concert we organized in the Poconos in 2017 featuring Sean Altman and Jack Skuller, who at the time were developing the Everly Set, in which they perform Everly Brothers songs. Our little show raised a few thousand dollars for the Rett Syndrome Research Trust, and Altman and Skuller have gone on to perform that show countless times for thousands of fans across the country.
But we were younger then. Now we’re in our 70s, and the prospect of organizing a serious event while also caring for Abby seems preposterous. So we’re reduced to spot giving, and in our case, the heart is more willing than the wallet is able.
Our $50 here and there seems increasingly out of phase with the realities of Rett syndrome funding. Back in the late 1990s, there was basically one main player in the United States, the International Rett Syndrome Association (now the International Rett Syndrome Foundation), and it was relatively small. We felt as if our $50 was really needed. Nowadays, there are multiple organizations with professional fundraisers and multimillion-dollar budgets, which is fantastic, but it’s harder to imagine that our pittance makes much difference.
Time to go big
That’s why I’m going all in on winning a lottery. A big one, so that I can make six-figure donations to these groups rather than two-figure ones. To secure the kind of money I’m talking about, the choice is either Mega Millions or Powerball, and after careful research, I’ve determined that Mega Millions tickets are $5 each, whereas Powerball tickets are only $2, so I’m going with Powerball. That means picking five numbers between 1 and 69, and a “Powerball number” between 1 and 26.
I recently realized that my strategy for picking those numbers — the usual birthdays, anniversaries, and such — is all wrong. If the point is to win money to give to Rett syndrome causes, the numbers should be drawn from our experiences with Abby and Rett syndrome. So here are the numbers I’m playing now:
- 1, for the number of words Abby has spoken in 29 years. The word was “cat.” We heard it a few times when she was not quite 2 years old, then the “regression” phase of Rett syndrome kicked in, wiping out her language and much else, and we never heard it again.
- 20, for the number of pills Abby takes every day for dystonia, seizures, and other problems.
- 29, for the number of days Abby spent in the hospital in 2009 when her back surgery went awry.
- 31, for the number of times Abby will watch the same video in a month like May that has 31 days.
- 52, for the number of minutes Donna spent on the phone recently trying to resolve a simple discrepancy in one of Abby’s medical bills.
- And, for the Powerball number, 24, for the number of hours per day one of us is making sure Abby doesn’t stumble, choke, have a medical crisis, wander off, or fall out of bed.
Recent jackpots have been well over $100 million. That should be enough for everybody.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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