Donating to BDSRA last year was a decision that made sense to Warren and Brenda Pfohl.
The couple and co-founders of David’s Refuge, a New York State-based non-profit that provides respite, resources, and support to parents and caregivers who have children with special needs or a fatal disease, wanted to continue to help families affected by Batten disease and give back to the organization that’s been with them every step of the way during their Batten journey.
Their son, David, battled Batten disease for 13 years before passing away in 2009 at the age of 20.
“They didn’t even know where it was on the DNA strand where the things were broken down (when David was diagnosed), so we’ve made a lot of progress, but we have so far to go,” Warren said. “And so we want to just continue to be a part of one day beating this horrible, horrible thing.”
The Pfohl Family
“They were there in a moment of complete terror and horror and brokenness,” Warren added of BDSRA. “Anytime we had questions, we had a resource to be able to go back to and they were the only organization doing something that was attempting to find a cure for what we were told was an untreatable, fatal progressive disease, which it was.”
When it came to giving back to BDSRA, Warren wanted to do so in the most strategic and effective way possible — a stock gift. A stock gift is appreciated stock that is donated by a seller who then doesn’t have to pay taxes on it if there is a capital gain on the stock — maximizing the amount donated to BDSRA.
“BDSRA for us, was there when our son David was diagnosed and kind of journeyed with us through his passing, and I want every dollar that I have to go to them and I’m a believer in paying my fair share in taxes,” Warren said. “But if I have a choice between giving $35,000 to the government or $35,000 to BDSRA, to me, it’s a no-brainer.”
Warren says it’s a win-win for both parties involved — the organization receives a valuable donation; the giver avoids capital gain and the total amount donated is tax deductible. The stock gift is also a perfect example of the unique and various ways people can donate money.
“We do most of our giving through appreciated stock and we also use a donor-advised fund, which is another great tool for people to consider when they’re looking at making investments or contributions to nonprofits,” Warren said.
“What also is helpful is, for example, a lot of times if I donate stock, what I will do then is I will repurchase that same amount of stock, and then my investor is able to rebalance my portfolio. So that’s a great way at that point in time for them to kind of look at how they might kind of change some of your investment strategy.”
For the Pfohls, the donation goes a long way towards helping families who are still on their journey of that original diagnosis and facing the road of uncertainty that is Batten disease. It’s another way of showing their appreciation for BDSRA and continuing to do their part in helping the organization fulfill its mission and vision.
“They were just there for us,” Warren said. “And for that, we’re eternally grateful.”
