The first time Young-dahl Song heard about the Chordoma Foundation, honestly, he was wary. There are so many nonprofit organizations with good intentions out there, but when he’d donated to larger ones in the past, he had felt like his relatively small gift was a “drop in the ocean” and he wondered if his contributions would actually be used to make a difference.
But a few months after being diagnosed with sacral chordoma in March 2012, Young-dahl’s outlook entirely changed.
The retired political science professor from Greenville, North Carolina was diagnosed during routine follow-up testing as a result of a battle with gastric cancer. No one in the Song family had ever heard of chordoma, so his adult daughters began researching this rare disease on the Internet. That’s when they came across the Chordoma Foundation (CF).
The family learned that CF would be holding its bi-annual Community Conference in Boston right around Young-dahl’s three-month follow-up with his doctors at Massachusetts General Hospital. Young-dahl still wasn’t sure about CF and was reluctant to attend the conference, but his wife Kim and his daughters cajoled him, and he relented.
CF community showed us ‘We are not alone’
His experience during those two days completely changed his perspective. “I learned that many fellow patients did not receive a correct diagnosis initially, and many did not know all their options of treatment. The number of patients with chordoma is so small [that we had been feeling isolated], and the Community Conference gave us the opportunity to meet other survivors to talk about our experiences. It is such a supportive community, and it made us feel that we are not alone.”
As he learned more about CF, Young-dahl was impressed by what the Foundation had accomplished in just a few short years. “I learned that in addition to the Community Conference, the Chordoma Foundation also supports important research, organizes conferences for scientists and physicians from all over the world, and raises public awareness about this rare disease. I believe this multi-pronged approach is critical, because this is not something that just one program can solve.”
At that conference, CF board member and businessman Adam Abram issued a $500,000 matching gift challenge to invite the chordoma community to join him and his wife Roz in helping the Foundation achieve its urgent research goals. That got the wheels turning in Young-dahl’s head.
“This organization is still very young and is still growing. In a short time, a few very dedicated people have done so much, and so successfully, and I was so impressed with those who lead this organization,” says Young-dahl. “Not only do I have a direct reason to be interested in finding a treatment for chordoma – I also believe that any basic research supported by the Foundation could also apply to other kinds of tumors. I thought, perhaps I should help.”
Deciding to make a transformational gift
Since immigrating to the U.S. from Korea, Young-dahl and Kim, a retired professor and anesthesiologist respectively, had lived the American Dream. The couple, now ages 76 and 72, had worked hard, saved money, and sent their three daughters through prestigious universities and graduate schools. Now Arleen, a physician, Julie, a lawyer, and Paula, a professor, were professionally stable and financially independent. Young-dahl and Kim felt that they could direct some of their savings toward other priorities.
With respect to their philanthropic goals, years ago Young-dahl and Kim had set up a charitable remainder unitrust (CRUT) that would provide income to spend during their lifetimes and support several nonprofit organizations after they passed away. But after learning about the Foundation, they wondered whether it might be better to make a gift now, when they could see their philanthropy make an immediate impact.
“The Chordoma Foundation has reached a critical stage,” he says, “and I felt that what it needed now was a new burst of energy to push it to another level. I’m happy that I had a chance to donate, and that Adam gave me the reason to jump, so that this young organization with a small budget has the resources to do a whole lot more in the future.”
Young-dahl and Kim decided to terminate their trust and make an immediate gift of more than $400,000 to CF to help meet the Abram Family’s challenge. But first, they invited their daughters and sons-in-law to dinner with the Abrams and CF Executive Director Josh Sommer so they could get to know CF and its leaders.
“This was an important decision for my father, but because we knew his reaction to the Community Conference and the work of the Foundation had been so strong, we weren’t surprised,” says Julie, the lawyer at a pharmaceutical services company. “Frankly, it’s hard not to be inspired by Josh, Adam, and [Board Chair] Heather Lee – the collection of talent and drive within this organization is extraordinary.”
Her father’s involvement with the Chordoma Foundation is consistent with his other passions and his approach to philanthropy, Julie notes. “My dad’s greatest avocation during his retirement has been collecting artwork and writings from Korea at the turn of the 20th century and reintroducing these works to Korean society. Ultimately, he hopes to donate these important collections to a Korean institution where they can be enjoyed broadly and make an impact on the public. So he has a track record of identifying things that are important but ‘uncommon,’ and focusing energy and attention on these things to bring about an awareness in society and touch many people’s lives. That is exactly what he is doing with his gift to the Chordoma Foundation.”
Support for CF now a family affair
Young-dahl would like supporting the Chordoma Foundation to be a family affair: a commitment that he hopes his daughters and sons-in-law will continue for years to come. Already, Paula, a professor of health services management and policy, has joined the Foundation’s Board of Directors. (The Song family also raised $11,000 – and awareness – for CF when Paula ran the Boston Marathon last year.) And each of the three women has professional expertise that could benefit the organization, notes their proud father.
“We are a close family – my parents, my sisters and all of our children – and I do think that the Chordoma Foundation will always be a focal point for us, even many years down the line,” says Julie of her father’s hoped-for legacy.
“This was the largest one-time contribution in my life,” says Young-dahl of his transformational gift to CF. “But money alone won’t solve problems: it requires the leadership and imagination that comes from dedicated people. I am hopeful that the research this gift helps make possible will lead to something good, both for chordoma and other health issues.”
Tell us your Uncommon Story
Telling your chordoma story in your own words can help others in our community feel more connected and prepared to take on whatever may lie ahead. We invite you share your experiences and insights with others, who can benefit from knowing they’re not alone.