Passion and commitment to a cause fuel the daily work of a development director, but that's especially true for Suzy Hoffman-Kipp, who left her job as development director of a music conservancy in Los Angeles last year to join the ALS Therapy Development Institute—and help it achieve its goal of raising $40 million in the next five years to fund research on amyotrophic lateral sclerosis (ALS).
Also known as Lou Gehrig’s disease, ALS attacks certain cells in the brain and spinal cord needed to keep muscles moving. The disease ultimately leads to paralysis and death. Most people with ALS live two to five years after their initial symptoms. About 10 percent of people with ALS survive at least a decade. Currently, there is no cure or effective treatment.
Hoffman-Kipp calls working with the ALSTDI team her “most personal job ever.” It's pulled her back into a world she had been immersed in daily for years, until three years ago when Peter Kipp, her husband of 17 years, lost a six-year battle with ALS. When the opportunity presented itself, “I knew I had to do this job,” says Hoffman-Kipp. “Did I worry about being back in that world again, dealing with people and families daily that were dealing ALS? Yes I did, but I also knew there is a lot of work to be done.
“Peter and I spent years researching the disease and looking for ways to help him," says Hoffman-Kipp. “We tried everything, and there definitely are things out there that will help. It really is a matter of raising the money for research and bringing drugs to market.”
Hoffman isn’t alone at ALSTDI in experiencing ALS firsthand. “The institute is unique in that many of us working within the organization have been personally touched, we’ve had loved ones that have died from ALS or are living with the disease. It makes for a dynamic, dedicated team.”
Hoffman-Kipp works with a group of six development specialists across the country. Her West Coast territory holds a third of the nation’s donors, and part of her job includes expanding ALS fundraising and awareness into seven other Western states. She maintains close contact with the West Coast ALS community, particularly in Los Angeles, strategizing creative ways to put their money to work.
“Our nonprofit exists because individuals donate personal funds to our work every day. The majority of these donations, both large and small, are solicited through our network of donors who participate in our brand events such as the Tri State Trek, or sometimes they create their own events,” says Hoffman-Kipp. Team Godfather is a San Diego nonprofit that raises funds for ALSTDI through events such as marathons and bike rides, and has a goal of raising $1,000,000 by 2017 for ALS research.
Other supporters start their own foundations, like Augie Nieto, who launched Augie’s Quest after his 2005 ALS diagnosis. Nieto is the co-founder of Life Fitness, a manufacturer of fitness and strength training equipment. Augie’s Quest donates 100 percent of its funds to ALSTDI. But Hoffman-Kipp says the more common model is to set up a family fund and solicit donations based on personal relationships under the banner of the ALS Therapy Development Institute. “We serve as the fiscal sponsor of fundraising events, help with event preparation, outreach tools, and provide all of the tax information and acknowledgment letters.”
Hoffman-Kipp says there are currently about 200 active family funds supporting ALSTDI, and that these funds work really well when “people are comfortable being public about their ALS diagnosis and proactive about asking loved ones to join the fight against ALS.” Hoffman-Kipp’s team works to amplify these efforts. ”We brainstorm ways to reach out to personal networks,” she says. “We know it is tough to face ALS and we know it is tough to ask for money.” Meanwhile, there are also many ALS patients and supporters who are more private about their health and choose instead to donate personal funds.
In addition to family funds and organized events, Hoffman-Kipp says that ALSTDI also works with high net worth individuals, including venture philanthropists, corporate executives, and family foundations in its quest for support.
Last summer, a media-driven fundraising phenomenon made ALS a household word. It was hard to watch television or log on to Facebook without seeing people dumping buckets of ice on their heads. “The Ice Bucket Challenge” (IBC) was started by Pete Frates and Pat Quinn, two friends in their early 30s who were both diagnosed with ALS in 2012 and 2013. The challenge went viral on social media, raising $220 million for the institute’s parent organization, the ALS Association. Of that money, $3.2 million was allocated to ALSTDI.
Hoffman-Kipp says those funds went toward research, particularly the precision medicine program. “Finding a cure for ALS is like finding pieces to a puzzle, and the puzzle is different for everyone,” she explains. “What may work for one person may not work for the other. That’s the importance of the precision medicine—it is tailored to the needs of the individual and their particular subgroup of the disease.”
This year’s expected funds will advance that research, Hoffman-Kipp says. ”The advocacy and awareness that came from the IBC was invaluable, and we expect the 2015 challenge to be just as successful,” she says. “We have 300 ALS patients all in various sub-groups waiting for a clinical trial that will further the role of precision medicine in the treatment of ALS.”
Meanwhile, Hoffman-Kipp will continue her work with the development team, working with ALS patients, family and friends to raise funds for further treatment discovery. She admits that it is a unique way of raising money—asking those most affected by the disease to help fund treatment. But it makes sense. She says, “Simply put, the urgency of the disease demands it—because of the rarity of the disease, pharmaceutical companies have not invested sufficient funds to effectively treat the disease. We have yet to find an effective treatment, let alone a cure.”
And that is where Hoffman-Kipp’s work comes in—mobilizing the funds needed to find solutions to a disease that she has come to know all too well.