A personal stamp
A family finds ways to leave its mark and spur on MS research.
by Vicky Uhland
Alan Buegeleisen was studying for a career in resource management in the late 1970s when ever-increasing fatigue and mobility impairments prevented him from attaining his goal. Eventually diagnosed with progressive multiple sclerosis in 1978, it took his family five more years to come to terms with the mental, emotional and physical impacts of the disease. Through that journey, they became staunch supporters of MS research and began a charitable campaign that has spanned 30 years and three generations of family members.
Alan’s parents, Abbott and Sally, established the Alan Buegeleisen MS Research Fund in 1983 to support emerging stem cell research that could benefit Alan and others with progressive MS. In later years, they expanded their criteria to include research that focuses on repairing myelin damage and restoring function lost to progressive MS. Currently, the Alan Buegeleisen Fund is supporting a three-year study of possible ways to increase the production of brain cells that can repair myelin damaged by MS.
A personal touch
To kick-start the fund, Sally launched a yearly gala in their winter home in Sarasota, Fla. “It was one of the first big events for MS in the area, with a casino corner, dinner and dancing,” says Alan’s sister, Monia Joblin. Sally continued the gala, which raised $60,000 to $80,000 a year, until about a decade ago. “She was nearing 80 and it just got to be too much for her,” Joblin says.
But Sally’s commitment to MS research was far from complete. Using the invitation list from the gala, she began writing personal letters soliciting donations to the Alan Buegeleisen Fund. “She netted as much from the letters as she did from the gala,” Joblin says.
“The research the Buegeleisens and the Joblins have funded over the years provides the much-needed basis for a more focused effort to address progressive MS—work that will benefit people like Alan,” says Mary Milgrom, executive vice president of Individual Giving for the National MS Society.
Though Sally died six years ago, Joblin and her father have continued the campaign, sending an annual solicitation to more than 300 people, with messages about Alan and the research the Buegeleisens are currently funding.
“We’ve found that the most active donors are the people you know, who care about you,” Joblin says. “We always try to put something personal in the letters.”
Joblin and her parents have contributed to MS research in other ways over the years, as well. Sally was on the National MS Society Board of Directors; Joblin now chairs the Mid Florida Chapter Board of Trustees and was on the selection committee for the inaugural Barancik Prize for Innovation in MS Research, first awarded in 2013.
Paying it forward
Joblin’s daughter, Sarah St. Germain, is also involved in the family initiative. At her wedding, she and her husband requested donations to the Society in lieu of gifts. And she’s helping her mother expand the letter-writing campaign to social media through a Facebook page.
Now, at age 63, her brother is almost completely immobile, but Joblin believes the ripples from the family’s commitment to MS research will always live on in some form. “When you tap into your passion—whether it’s anger, love, urgency—people will respond to it,” Joblin says.